Re: RE: Difficult Question

[Guest guest]

How do most people deal with cirrhosis and do they take alternative medicines?

I am 64 and have stage 4 cirrhosis  of the liver.  I still feel very good and

go to the gym 5 days a week.  I am wondering what other people do.

Z

________________________________

To: livercirrhosissupport

Sent: Thursday, March 1, 2012 6:45:14 AM

Subject: RE: Difficult Question

 

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us

bit by bit daily.

To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out

for help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for

someone in your shoes. I don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger

on. You spoke of him asking for pain meds, which was highly out of

character for him. The same happened with my husband. He never wanted

anything for pain until the last 2 weeks of his life. He went in for a

paracentesis and asked the doctor for something for pain. He was

prescribed Fentenyl transdermal patches. He had roundly refused anything

whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to

change the bandage on it several times daily right up until his last

breath. He became more and more confused, slept almost 24/7, could no

longer eat or even sip water. He could not take his meds because he could

not swallow them. His balance was really bad and he could barely stand up

from his chair without assistance. He had no bowel or bladder control but

that became a sort of non-issue because both his bowel and bladder just

stopped working.

At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital. Two

days after, the Hospice people came to our house and talked to me about

what to expect. They tried to talk to my husband but he slept so much, he

couldn't form a sentence. They explained to me that he was reacting in a

very normal way for what he was going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for

him. He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I

opened his after we had been home for about 9 days. I called his Hospice

nurse who came as soon as she could get there to help me understand

everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him

from his chair into the bed. The Hospice nursing assistant arrived soon

afterwards and spent most of that day with us. She bathed him and changed

his bed linens even though he had just gotten in bed. She wanted

everything to be fresh so he could be comfortable.

I had already started using the meds from his kit. He had morphine for

pain (if one is allergic to morphine, the doctor will order other pain

meds), haldol for restlessness, some sort of drops to dry up the secretions

in his mouth so he wouldn't choke on them and one other that I can not

remember at the moment.

When he was awake, however briefly, he still knew everyone who came to

visit up until Saturday morning. We had met when I was 15 and had dated

until I finished high school and got married that summer. He had always

signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when

he needed me. I had moved the sofa into his room so I could be there with

him 24/7. He would call out " Di " when he wanted me at his bedside. He

kept trying to say something, but could not. Finally, he moaned very

deeply and I rushed to his bedside. I took his hand and he opened his

eyes. He had a tear rolling down his cheek. He looked into my eyes,

squeezed my hand and whispered 'forever and always'. I began to cry as I

leaned over him to kiss him and said " I know baby, you love me forever and

always and I love you too, forever and always. " He never made a sound or

opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever

and always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7,

cannot swallow, no appetite or thirst, inability to walk without

assistance, loss of bowel and bladder control with soon coming shut down of

both, confusion that worsens with every hour and for my husband at least,

huge fluid retention with a leak that grew daily.

There are some things that happened with my husband after he crossed that

are hard to hear. However, if you would like to know about it, please

email me privately at diane.chandler.75@... . Many would most likely

not want to read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time

with any hope of having peace afterwards. This is hard work, the kind that

will drain life from you and it does from him. I wish I had involved

Hospice much earlier and did so with my Daddy who crossed last September

and had been in Hospice for 10 months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close;

you still have many days, weeks, months, years to go in your own. You will

need your strength for the remainder of your own journey.

Many hugs...........

Diane C from TN

[Guest guest]

Dianne

Ya, I'm crying!!  But, what an absolutely beautiful story of love for always!

________________________________

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us

bit by bit daily.

To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out

for help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for

someone in your shoes. I don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger

on. You spoke of him asking for pain meds, which was highly out of

character for him. The same happened with my husband. He never wanted

anything for pain until the last 2 weeks of his life. He went in for a

paracentesis and asked the doctor for something for pain. He was

prescribed Fentenyl transdermal patches. He had roundly refused anything

whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to

change the bandage on it several times daily right up until his last

breath. He became more and more confused, slept almost 24/7, could no

longer eat or even sip water. He could not take his meds because he could

not swallow them. His balance was really bad and he could barely stand up

from his chair without assistance. He had no bowel or bladder control but

that became a sort of non-issue because both his bowel and bladder just

stopped working.

At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital. Two

days after, the Hospice people came to our house and talked to me about

what to expect. They tried to talk to my husband but he slept so much, he

couldn't form a sentence. They explained to me that he was reacting in a

very normal way for what he was going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for

him. He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I

opened his after we had been home for about 9 days. I called his Hospice

nurse who came as soon as she could get there to help me understand

everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him

from his chair into the bed. The Hospice nursing assistant arrived soon

afterwards and spent most of that day with us. She bathed him and changed

his bed linens even though he had just gotten in bed. She wanted

everything to be fresh so he could be comfortable.

I had already started using the meds from his kit. He had morphine for

pain (if one is allergic to morphine, the doctor will order other pain

meds), haldol for restlessness, some sort of drops to dry up the secretions

in his mouth so he wouldn't choke on them and one other that I can not

remember at the moment.

When he was awake, however briefly, he still knew everyone who came to

visit up until Saturday morning. We had met when I was 15 and had dated

until I finished high school and got married that summer. He had always

signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when

he needed me. I had moved the sofa into his room so I could be there with

him 24/7. He would call out " Di " when he wanted me at his bedside. He

kept trying to say something, but could not. Finally, he moaned very

deeply and I rushed to his bedside. I took his hand and he opened his

eyes. He had a tear rolling down his cheek. He looked into my eyes,

squeezed my hand and whispered 'forever and always'. I began to cry as I

leaned over him to kiss him and said " I know baby, you love me forever and

always and I love you too, forever and always. " He never made a sound or

opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever

and always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7,

cannot swallow, no appetite or thirst, inability to walk without

assistance, loss of bowel and bladder control with soon coming shut down of

both, confusion that worsens with every hour and for my husband at least,

huge fluid retention with a leak that grew daily.

There are some things that happened with my husband after he crossed that

are hard to hear. However, if you would like to know about it, please

email me privately at diane.chandler.75@... . Many would most likely

not want to read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time

with any hope of having peace afterwards. This is hard work, the kind that

will drain life from you and it does from him. I wish I had involved

Hospice much earlier and did so with my Daddy who crossed last September

and had been in Hospice for 10 months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close;

you still have many days, weeks, months, years to go in your own. You will

need your strength for the remainder of your own journey.

Many hugs...........

Diane C from TN

[Guest guest]

Beautiful, Dianne. Sniff sniff.

.

Re: RE: Difficult Question

Dianne

Ya, I'm crying!!  But, what an absolutely beautiful story of love for always!

________________________________

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

To answer your question, no this is not the time you sit by and watch him wither

up and die. It is the time you pool your resources and reach out for help so

you can help him cross over with dignity and pain free and as comfortable as is

humanly possible. Hospice is an excellent choice for someone in your shoes. I

don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went home

on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger on. You

spoke of him asking for pain meds, which was highly out of character for him.

The same happened with my husband. He never wanted anything for pain until the

last 2 weeks of his life. He went in for a paracentesis and asked the doctor

for something for pain. He was prescribed Fentenyl transdermal patches. He had

roundly refused anything whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

At the hospital for the paracentesis, I asked for the Hospice consultation. He

was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps even

only a few hours, until the time comes for the final crossing. I opened his

after we had been home for about 9 days. I called his Hospice nurse who came as

soon as she could get there to help me understand everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his own

decisions so I had them order a hospital bed. It was delivered that afternoon.

EMS staff arrived very early the next morning and moved him from his chair into

the bed. The Hospice nursing assistant arrived soon afterwards and spent most

of that day with us. She bathed him and changed his bed linens even though he

had just gotten in bed. She wanted everything to be fresh so he could be

comfortable.

I had already started using the meds from his kit. He had morphine for pain (if

one is allergic to morphine, the doctor will order other pain meds), haldol for

restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

When he was awake, however briefly, he still knew everyone who came to visit up

until Saturday morning. We had met when I was 15 and had dated until I finished

high school and got married that summer. He had always signed anything he ever

wrote to me " I love you, forever and always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to

read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to Hospice

for help. You need it if you are to navigate this difficult time with any hope

of having peace afterwards. This is hard work, the kind that will drain life

from you and it does from him. I wish I had involved Hospice much earlier and

did so with my Daddy who crossed last September and had been in Hospice for 10

months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of earlier.

Please take care of yourself. His journey is drawing to a close; you still have

many days, weeks, months, years to go in your own. You will need your strength

for the remainder of your own journey.

Many hugs...........

Diane C from TN

[Guest guest]

My cirrhosis brought on my liver cancer!!  However, even though I was told

about the diagnosis last Sept 2011, in no way has anything changed for me.  I

tell people that they are looking at the healthiest terminal person that they

ever will again.

I have a very tight Spiritual Faith.  I knowthat nothing happens without a

purpose.  I have absolutely no control or say in my cancer, so it's best that I

just through the thoughts away.  What will be, will be!!  In the meantime, I

want to live each day to the level that I can.

My suggestion - don't give the cirrhosis another thought and keep doing what is

happy for yourself.  I admire that at 64, you are still able to go to the gym 5

days of a week.  I'm 61 and sorry that I didn't look after my body a whole lot

more.  It would be one of the  " if only I had " ; but, that wasn't part of the

story of my life.

________________________________

 

How do most people deal with cirrhosis and do they take alternative medicines?

I am 64 and have stage 4 cirrhosis  of the liver.  I still feel very good and

go to the gym 5 days a week.  I am wondering what other people do.

Z

________________________________

To: livercirrhosissupport

Sent: Thursday, March 1, 2012 6:45:14 AM

Subject: RE: Difficult Question

 

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us

bit by bit daily.

To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out

for help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for

someone in your shoes. I don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger

on. You spoke of him asking for pain meds, which was highly out of

character for him. The same happened with my husband. He never wanted

anything for pain until the last 2 weeks of his life. He went in for a

paracentesis and asked the doctor for something for pain. He was

prescribed Fentenyl transdermal patches. He had roundly refused anything

whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to

change the bandage on it several times daily right up until his last

breath. He became more and more confused, slept almost 24/7, could no

longer eat or even sip water. He could not take his meds because he could

not swallow them. His balance was really bad and he could barely stand up

from his chair without assistance. He had no bowel or bladder control but

that became a sort of non-issue because both his bowel and bladder just

stopped working.

At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital. Two

days after, the Hospice people came to our house and talked to me about

what to expect. They tried to talk to my husband but he slept so much, he

couldn't form a sentence. They explained to me that he was reacting in a

very normal way for what he was going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for

him. He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I

opened his after we had been home for about 9 days. I called his Hospice

nurse who came as soon as she could get there to help me understand

everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him

from his chair into the bed. The Hospice nursing assistant arrived soon

afterwards and spent most of that day with us. She bathed him and changed

his bed linens even though he had just gotten in bed. She wanted

everything to be fresh so he could be comfortable.

I had already started using the meds from his kit. He had morphine for

pain (if one is allergic to morphine, the doctor will order other pain

meds), haldol for restlessness, some sort of drops to dry up the secretions

in his mouth so he wouldn't choke on them and one other that I can not

remember at the moment.

When he was awake, however briefly, he still knew everyone who came to

visit up until Saturday morning. We had met when I was 15 and had dated

until I finished high school and got married that summer. He had always

signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when

he needed me. I had moved the sofa into his room so I could be there with

him 24/7. He would call out " Di " when he wanted me at his bedside. He

kept trying to say something, but could not. Finally, he moaned very

deeply and I rushed to his bedside. I took his hand and he opened his

eyes. He had a tear rolling down his cheek. He looked into my eyes,

squeezed my hand and whispered 'forever and always'. I began to cry as I

leaned over him to kiss him and said " I know baby, you love me forever and

always and I love you too, forever and always. " He never made a sound or

opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever

and always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7,

cannot swallow, no appetite or thirst, inability to walk without

assistance, loss of bowel and bladder control with soon coming shut down of

both, confusion that worsens with every hour and for my husband at least,

huge fluid retention with a leak that grew daily.

There are some things that happened with my husband after he crossed that

are hard to hear. However, if you would like to know about it, please

email me privately at diane.chandler.75@... . Many would most likely

not want to read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time

with any hope of having peace afterwards. This is hard work, the kind that

will drain life from you and it does from him. I wish I had involved

Hospice much earlier and did so with my Daddy who crossed last September

and had been in Hospice for 10 months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close;

you still have many days, weeks, months, years to go in your own. You will

need your strength for the remainder of your own journey.

Many hugs...........

Diane C from TN

[Guest guest]

Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

I asked the doctor today about a hospice consult. Her response way " why " ? which

really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

I'm beginning to think that allowing him to only let UTMB handle his liver was a

HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

> Beautiful, Dianne. Sniff sniff.

> .

>

> Re: RE: Difficult Question

>

> Dianne

>

> Ya, I'm crying!!  But, what an absolutely beautiful story of love for always!

>

>

>

> ________________________________

> Hi Kim. First of all let me say that I am so sorry for all you are going

>

> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>

> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

> I have walked your path to some degree. My husband of over 33 years went home

on Jan. 26, 2009. He had NASH cirrhosis.

>

> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>

> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>

> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>

> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>

> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>

> He had refused to have a hospital bed, but was now incapable of making his own

decisions so I had them order a hospital bed. It was delivered that afternoon.

EMS staff arrived very early the next morning and moved him from his chair into

the bed. The Hospice nursing assistant arrived soon afterwards and spent most

of that day with us. She bathed him and changed his bed linens even though he

had just gotten in bed. She wanted everything to be fresh so he could be

comfortable.

>

> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>

> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>

> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>

> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>

> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>

> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>

> Please know my heart and my prayers are with you. Please reach out to Hospice

for help. You need it if you are to navigate this difficult time with any hope

of having peace afterwards. This is hard work, the kind that will drain life

from you and it does from him. I wish I had involved Hospice much earlier and

did so with my Daddy who crossed last September and had been in Hospice for 10

months. He had C.O.P.D.

>

> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>

> Many hugs...........

>

> Diane C from TN

>

>

[Guest guest]

Hi Gloria

I think I have chatted with you before on the Canadian Hep site.  Anyway, I

admire your strength.  Yes, only God knows how long we will live and I believe

that when HE thinks you are ready He will take you home.  Doctors can only

guess how long we have on earth.  You still have a job to do here and that is

to help others.  You are still " healthy " and that is something to be thankful

for.  

My Hepatologist is really worried about me because I cannot do the Interferon.

 I tried last spring and had to stop just as I finished my 7 weeks. He want me

to do the Teleprivir but that includes the Interferon again.  He has put me on

a list for clinical trials coming up this year in Winnipeg.  I have told him I

am interested in being part of that.  That won't happen until mid 2012 but I

think I can wait. I have another U/S coming up mid April, and an appointment end

of May, so then I will know more.

I am also looking at Low dose Naltrexone which is being used by naturopathic

doctors to prevent the progression of disease and stop cancer.  Problem is I

need a prescription for that and so far haven't convinced my local doctor to

give me one.   I am going to see if the Naturopathic doctor will give me one.

 At least with that it will give me the time I need as I wait for other

treatments if the clinical trial doesn't happen.

It was good to hear from you again and how you are doing.  Stay strong and I

will pray for you.

Z

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport > .

Sent: Thursday, March 1, 2012 10:13:38 PM

Subject: Re: RE: Difficult Question

 

My cirrhosis brought on my liver cancer!!  However, even though I was told

about the diagnosis last Sept 2011, in no way has anything changed for me.  I

tell people that they are looking at the healthiest terminal person that they

ever will again.

I have a very tight Spiritual Faith.  I knowthat nothing happens without a

purpose.  I have absolutely no control or say in my cancer, so it's best that I

just through the thoughts away.  What will be, will be!!  In the meantime, I

want to live each day to the level that I can.

My suggestion - don't give the cirrhosis another thought and keep doing what is

happy for yourself.  I admire that at 64, you are still able to go to the gym 5

days of a week.  I'm 61 and sorry that I didn't look after my body a whole lot

more.  It would be one of the  " if only I had " ; but, that wasn't part of the

story of my life.

________________________________

 

How do most people deal with cirrhosis and do they take alternative medicines?

I am 64 and have stage 4 cirrhosis  of the liver.  I still feel very good and

go to the gym 5 days a week.  I am wondering what other people do.

Z

________________________________

To: livercirrhosissupport

Sent: Thursday, March 1, 2012 6:45:14 AM

Subject: RE: Difficult Question

 

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us

bit by bit daily.

To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out

for help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for

someone in your shoes. I don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger

on. You spoke of him asking for pain meds, which was highly out of

character for him. The same happened with my husband. He never wanted

anything for pain until the last 2 weeks of his life. He went in for a

paracentesis and asked the doctor for something for pain. He was

prescribed Fentenyl transdermal patches. He had roundly refused anything

whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to

change the bandage on it several times daily right up until his last

breath. He became more and more confused, slept almost 24/7, could no

longer eat or even sip water. He could not take his meds because he could

not swallow them. His balance was really bad and he could barely stand up

from his chair without assistance. He had no bowel or bladder control but

that became a sort of non-issue because both his bowel and bladder just

stopped working.

At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital. Two

days after, the Hospice people came to our house and talked to me about

what to expect. They tried to talk to my husband but he slept so much, he

couldn't form a sentence. They explained to me that he was reacting in a

very normal way for what he was going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for

him. He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I

opened his after we had been home for about 9 days. I called his Hospice

nurse who came as soon as she could get there to help me understand

everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him

from his chair into the bed. The Hospice nursing assistant arrived soon

afterwards and spent most of that day with us. She bathed him and changed

his bed linens even though he had just gotten in bed. She wanted

everything to be fresh so he could be comfortable.

I had already started using the meds from his kit. He had morphine for

pain (if one is allergic to morphine, the doctor will order other pain

meds), haldol for restlessness, some sort of drops to dry up the secretions

in his mouth so he wouldn't choke on them and one other that I can not

remember at the moment.

When he was awake, however briefly, he still knew everyone who came to

visit up until Saturday morning. We had met when I was 15 and had dated

until I finished high school and got married that summer. He had always

signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when

he needed me. I had moved the sofa into his room so I could be there with

him 24/7. He would call out " Di " when he wanted me at his bedside. He

kept trying to say something, but could not. Finally, he moaned very

deeply and I rushed to his bedside. I took his hand and he opened his

eyes. He had a tear rolling down his cheek. He looked into my eyes,

squeezed my hand and whispered 'forever and always'. I began to cry as I

leaned over him to kiss him and said " I know baby, you love me forever and

always and I love you too, forever and always. " He never made a sound or

opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever

and always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7,

cannot swallow, no appetite or thirst, inability to walk without

assistance, loss of bowel and bladder control with soon coming shut down of

both, confusion that worsens with every hour and for my husband at least,

huge fluid retention with a leak that grew daily.

There are some things that happened with my husband after he crossed that

are hard to hear. However, if you would like to know about it, please

email me privately at diane.chandler.75@... . Many would most likely

not want to read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time

with any hope of having peace afterwards. This is hard work, the kind that

will drain life from you and it does from him. I wish I had involved

Hospice much earlier and did so with my Daddy who crossed last September

and had been in Hospice for 10 months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close;

you still have many days, weeks, months, years to go in your own. You will

need your strength for the remainder of your own journey.

Many hugs...........

Diane C from TN

[Guest guest]

Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

Z

________________________________

To: livercirrhosissupport

Sent: Friday, March 2, 2012 12:08:09 AM

Subject: Re: RE: Difficult Question

 

Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

I asked the doctor today about a hospice consult. Her response way " why " ? which

really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

I'm beginning to think that allowing him to only let UTMB handle his liver was a

HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

> Beautiful, Dianne. Sniff sniff.

> .

>

> Re: RE: Difficult Question

>

> Dianne

>

> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>

>

>

> ________________________________

> Hi Kim. First of all let me say that I am so sorry for all you are going

>

> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>

> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

> I have walked your path to some degree. My husband of over 33 years went home

on Jan. 26, 2009. He had NASH cirrhosis.

>

> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>

> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>

> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>

> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>

> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>

> He had refused to have a hospital bed, but was now incapable of making his own

decisions so I had them order a hospital bed. It was delivered that afternoon.

EMS staff arrived very early the next morning and moved him from his chair into

the bed. The Hospice nursing assistant arrived soon afterwards and spent most

of that day with us. She bathed him and changed his bed linens even though he

had just gotten in bed. She wanted everything to be fresh so he could be

comfortable.

>

> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>

> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>

> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>

> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>

> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>

> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>

> Please know my heart and my prayers are with you. Please reach out to Hospice

for help. You need it if you are to navigate this difficult time with any hope

of having peace afterwards. This is hard work, the kind that will drain life

from you and it does from him. I wish I had involved Hospice much earlier and

did so with my Daddy who crossed last September and had been in Hospice for 10

months. He had C.O.P.D.

>

> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>

> Many hugs...........

>

> Diane C from TN

>

>

[Guest guest]

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

I couldn't agree with your more, .  Before my husband's transplant we

went to one center where we weren't treated with compassion and respect.  The

head of transplant surgery reminded me of " House, MD. "   Also we had a

gastroenterologist tell us that chances of getting a new liver were pretty slim

because the waiting list was very long and he had a lot of patients in his

practice alone who were already on the list.  I told him that if a liver became

available it would depend on my husband's MELD score of how sick he was and if

the liver was a match.  Suppose he was the only match for that liver?  We went

to a 2nd transplant center where they did everything they could to help us, and

we had a successful outcome.  I agree with you.  Keep looking until you find

drs who are right for you.  And for anyone who wants to know, we live in PA and

were very happy with Penn State Milton S. Hershey Medical Center.  is

almost 2 years post

transplant and doing well!  Jackie E.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, March 2, 2012 11:29 AM

Subject: Re: RE: Difficult Question

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you very

much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ? which

really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The fact

he is basically bed ridden? That he has swells up so badly? What about the fact

that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for help

so you can help him cross over with dignity and pain free and as comfortable as

is humanly possible. Hospice is an excellent choice for someone in your shoes. I

don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went home

on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain until

the last 2 weeks of his life. He went in for a paracentesis and asked the doctor

for something for pain. He was prescribed Fentenyl transdermal patches. He had

roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His balance

was really bad and he could barely stand up from his chair without assistance.

He had no bowel or bladder control but that became a sort of non-issue because

both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he began

to balloon up within 24 hours. There was nothing else to be done for him. He had

no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened his

after we had been home for about 9 days. I called his Hospice nurse who came as

soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him 24/7.

He would call out " Di " when he wanted me at his bedside. He kept trying to say

something, but could not. Finally, he moaned very deeply and I rushed to his

bedside. I took his hand and he opened his eyes. He had a tear rolling down his

cheek. He looked into my eyes, squeezed my hand and whispered 'forever and

always'. I began to cry as I leaned over him to kiss him and said " I know baby,

you love me forever and always and I love you too, forever and always. " He never

made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to Hospice

for help. You need it if you are to navigate this difficult time with any hope

of having peace afterwards. This is hard work, the kind that will drain life

from you and it does from him. I wish I had involved Hospice much earlier and

did so with my Daddy who crossed last September and had been in Hospice for 10

months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need your

strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

Kim

Bobby said it all!!  Would you like to be responsible for all of that at home

and with young children??  I know that

I definitely would want any part of that.  I thank Bobby for opening my eyes

and I'm grateful that I've already set up an appointment with Hospice.

Ardis was very blessed to have Bobby watching over her and I'm sure you want to

do the same with your husband.  But, I think it's a job that more people are

needed.  I am stunned by that Drs manner and you don't need her to tell you

when.  You get the appointment and make the arrangements.  They are trained

for what they do, which is a beautiful thing for anyone at the end.

You know now where the confusion comes from??  The round the clock sleeping is

likely a combination of medication and the liver beginning to shut down.

________________________________

 

Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

I asked the doctor today about a hospice consult. Her response way " why " ? which

really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

I'm beginning to think that allowing him to only let UTMB handle his liver was a

HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

> Beautiful, Dianne. Sniff sniff.

> .

>

> Re: RE: Difficult Question

>

> Dianne

>

> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>

>

>

> ________________________________

> Hi Kim. First of all let me say that I am so sorry for all you are going

>

> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>

> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

> I have walked your path to some degree. My husband of over 33 years went home

on Jan. 26, 2009. He had NASH cirrhosis.

>

> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>

> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>

> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>

> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>

> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>

> He had refused to have a hospital bed, but was now incapable of making his own

decisions so I had them order a hospital bed. It was delivered that afternoon.

EMS staff arrived very early the next morning and moved him from his chair into

the bed. The Hospice nursing assistant arrived soon afterwards and spent most

of that day with us. She bathed him and changed his bed linens even though he

had just gotten in bed. She wanted everything to be fresh so he could be

comfortable.

>

> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>

> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>

> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>

> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>

> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>

> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>

> Please know my heart and my prayers are with you. Please reach out to Hospice

for help. You need it if you are to navigate this difficult time with any hope

of having peace afterwards. This is hard work, the kind that will drain life

from you and it does from him. I wish I had involved Hospice much earlier and

did so with my Daddy who crossed last September and had been in Hospice for 10

months. He had C.O.P.D.

>

> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>

> Many hugs...........

>

> Diane C from TN

>

>

[Guest guest]

Yes, I thought your name looked awfully familiar!  Small world isn't it?? 

I tell folks that I am no stronger than anyone else.  With the Hep C

treatments, I didn't think I had a choice.  The one with the Telaprevir was

brutal.  Just about all the time, I thought I needed to have a bed in the psych

ward.  I could not control my emotions at all.  My anti-d's were upped shortly

into the tx and very very fortunately, I asked for more a week prior to my 36th

week visit.  I believe firmly that my Creator actually set me on the path to

get the medication, because of what was going to happen the following week.

Definitely I know with no reservation, that my Creator manipulated me into

reestablishing my love for Yanni music in August.  When I got the phone call

that my cancer was back, I needed the peace and serenity.  To this very moment,

I have Yanni cranked on and if I'm going out in the truck, I just plug my cell

phone in.  I want to still be healthy in June, because I'm planning to fly out

to Toronto and take in his concert there!!  I can't wait until he gets to the

west coast.

It was sad how that Canadian group all but shut down as soon as folks got their

money.  I can't help but think, OK so you got money for being infected when it

shouldn't have happened; but, is that money going to buy you your health

again??  Perhaps folks might find later that they still need the support from

groups such as this one.  It's the people that I talk to online, that give me

the most amount of support, like no where else. 

You bet that I'm grateful for every single day that I wake up!!  It doesn't

matter what the weather is doing, since we get so much rain on the west coast. 

But even those days are bright and shiny as far as I'm concerned.  Thank you

for your words about why I am still here!!  Absolutely, if my words help anyone

out there, I'd be only too glad to share or listen.  Even a friend that has

just learned he has lung cancer.  Because I've stayed in some sort of contact

with him for years (online), he sent me an email even before he went to the

appointment that confirmed his lung cancer.  He says, you know more about what

I'm trying to say and my family can't understand yet.  You bet I do!!  It is a

privilege to be of some help there.

Do you know if the Telaprevir has been accepted in any of the provinces yet?? 

I'd like to grap the Health Minister for BC AND the staff under him and give

them a lesson in what some of those folks are praying doesn't happen while they

are waiting.  In fact, there is some kind of forum that been held today in

, to get some points across to the government.  I know that I would

have been the " right " person to tell my story; but, I couldn't go.  

Good to get back together through support!!  Plus, email me privately any time

you would like.

Gloria

________________________________

 

Hi Gloria

I think I have chatted with you before on the Canadian Hep site.  Anyway, I

admire your strength.  Yes, only God knows how long we will live and I believe

that when HE thinks you are ready He will take you home.  Doctors can only

guess how long we have on earth.  You still have a job to do here and that is

to help others.  You are still " healthy " and that is something to be thankful

for.  

My Hepatologist is really worried about me because I cannot do the Interferon.

 I tried last spring and had to stop just as I finished my 7 weeks. He want me

to do the Teleprivir but that includes the Interferon again.  He has put me on

a list for clinical trials coming up this year in Winnipeg.  I have told him I

am interested in being part of that.  That won't happen until mid 2012 but I

think I can wait. I have another U/S coming up mid April, and an appointment end

of May, so then I will know more.

I am also looking at Low dose Naltrexone which is being used by naturopathic

doctors to prevent the progression of disease and stop cancer.  Problem is I

need a prescription for that and so far haven't convinced my local doctor to

give me one.   I am going to see if the Naturopathic doctor will give me one.

 At least with that it will give me the time I need as I wait for other

treatments if the clinical trial doesn't happen.

It was good to hear from you again and how you are doing.  Stay strong and I

will pray for you.

Z

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport > .

Sent: Thursday, March 1, 2012 10:13:38 PM

Subject: Re: RE: Difficult Question

 

My cirrhosis brought on my liver cancer!!  However, even though I was told

about the diagnosis last Sept 2011, in no way has anything changed for me.  I

tell people that they are looking at the healthiest terminal person that they

ever will again.

I have a very tight Spiritual Faith.  I knowthat nothing happens without a

purpose.  I have absolutely no control or say in my cancer, so it's best that I

just through the thoughts away.  What will be, will be!!  In the meantime, I

want to live each day to the level that I can.

My suggestion - don't give the cirrhosis another thought and keep doing what is

happy for yourself.  I admire that at 64, you are still able to go to the gym 5

days of a week.  I'm 61 and sorry that I didn't look after my body a whole lot

more.  It would be one of the  " if only I had " ; but, that wasn't part of the

story of my life.

________________________________

 

How do most people deal with cirrhosis and do they take alternative medicines?

I am 64 and have stage 4 cirrhosis  of the liver.  I still feel very good and

go to the gym 5 days a week.  I am wondering what other people do.

Z

________________________________

To: livercirrhosissupport

Sent: Thursday, March 1, 2012 6:45:14 AM

Subject: RE: Difficult Question

 

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us

bit by bit daily.

To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out

for help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for

someone in your shoes. I don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger

on. You spoke of him asking for pain meds, which was highly out of

character for him. The same happened with my husband. He never wanted

anything for pain until the last 2 weeks of his life. He went in for a

paracentesis and asked the doctor for something for pain. He was

prescribed Fentenyl transdermal patches. He had roundly refused anything

whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to

change the bandage on it several times daily right up until his last

breath. He became more and more confused, slept almost 24/7, could no

longer eat or even sip water. He could not take his meds because he could

not swallow them. His balance was really bad and he could barely stand up

from his chair without assistance. He had no bowel or bladder control but

that became a sort of non-issue because both his bowel and bladder just

stopped working.

At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital. Two

days after, the Hospice people came to our house and talked to me about

what to expect. They tried to talk to my husband but he slept so much, he

couldn't form a sentence. They explained to me that he was reacting in a

very normal way for what he was going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for

him. He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I

opened his after we had been home for about 9 days. I called his Hospice

nurse who came as soon as she could get there to help me understand

everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him

from his chair into the bed. The Hospice nursing assistant arrived soon

afterwards and spent most of that day with us. She bathed him and changed

his bed linens even though he had just gotten in bed. She wanted

everything to be fresh so he could be comfortable.

I had already started using the meds from his kit. He had morphine for

pain (if one is allergic to morphine, the doctor will order other pain

meds), haldol for restlessness, some sort of drops to dry up the secretions

in his mouth so he wouldn't choke on them and one other that I can not

remember at the moment.

When he was awake, however briefly, he still knew everyone who came to

visit up until Saturday morning. We had met when I was 15 and had dated

until I finished high school and got married that summer. He had always

signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when

he needed me. I had moved the sofa into his room so I could be there with

him 24/7. He would call out " Di " when he wanted me at his bedside. He

kept trying to say something, but could not. Finally, he moaned very

deeply and I rushed to his bedside. I took his hand and he opened his

eyes. He had a tear rolling down his cheek. He looked into my eyes,

squeezed my hand and whispered 'forever and always'. I began to cry as I

leaned over him to kiss him and said " I know baby, you love me forever and

always and I love you too, forever and always. " He never made a sound or

opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever

and always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7,

cannot swallow, no appetite or thirst, inability to walk without

assistance, loss of bowel and bladder control with soon coming shut down of

both, confusion that worsens with every hour and for my husband at least,

huge fluid retention with a leak that grew daily.

There are some things that happened with my husband after he crossed that

are hard to hear. However, if you would like to know about it, please

email me privately at diane.chandler.75@... . Many would most likely

not want to read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time

with any hope of having peace afterwards. This is hard work, the kind that

will drain life from you and it does from him. I wish I had involved

Hospice much earlier and did so with my Daddy who crossed last September

and had been in Hospice for 10 months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close;

you still have many days, weeks, months, years to go in your own. You will

need your strength for the remainder of your own journey.

Many hugs...........

Diane C from TN

[Guest guest]

Sadly,   Lackalose is not a prescribed medication, it's over the

counter.  It sure is where I live; but, I talk to a lot of Americans that say

the same thing.

________________________________

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

No kidding, lactulose is over the counter in BC? Wow. Still a prescription drug

here in Colorado. Love, Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, March 2, 2012 5:23 PM

Subject: Re: RE: Difficult Question

 

Sadly,   Lackalose is not a prescribed medication, it's over the

counter.  It sure is where I live; but, I talk to a lot of Americans that say

the same thing.

________________________________

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

Oh, I would never have thought that we Canadians actually have a medication OTC

before the Americans.

________________________________

 

No kidding, lactulose is over the counter in BC? Wow. Still a prescription drug

here in Colorado. Love, Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, March 2, 2012 5:23 PM

Subject: Re: RE: Difficult Question

 

Sadly,   Lackalose is not a prescribed medication, it's over the

counter.  It sure is where I live; but, I talk to a lot of Americans that say

the same thing.

________________________________

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

The remark is because we always are behind in many areas.  In fact, the

protease inhibitors for Hep C treatment, have been accepted since last May and

people are getting free of the insidious disease.  But, in Canada - we have to

wait until it clears all of the red tape!!  Health Canada has put their stamp

on it; but, the provinces have to approve because of the cost.  Most of us will

hit the limit that is allowed in each individual case, very quickly.  Then,

it's up to our system to take the full load on.  I say - it's cheaper than a

transplant; but, who is going to listen to me.  LOL

________________________________

 

Oh, I would never have thought that we Canadians actually have a medication OTC

before the Americans.

________________________________

 

No kidding, lactulose is over the counter in BC? Wow. Still a prescription drug

here in Colorado. Love, Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, March 2, 2012 5:23 PM

Subject: Re: RE: Difficult Question

 

Sadly,   Lackalose is not a prescribed medication, it's over the

counter.  It sure is where I live; but, I talk to a lot of Americans that say

the same thing.

________________________________

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

 

If lactulose were OTC in the US,the country would be a better place.  The most

powerful, non addicting laxative  in the world isn't available unless you have

liver disease. I believe that less people would get liver disease in the first

place if every one had access to lactulose. Bobby

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Saturday, March 3, 2012 9:28 PM

Subject: Re: RE: Difficult Question

 

The remark is because we always are behind in many areas.  In fact, the

protease inhibitors for Hep C treatment, have been accepted since last May and

people are getting free of the insidious disease.  But, in Canada - we have to

wait until it clears all of the red tape!!  Health Canada has put their stamp

on it; but, the provinces have to approve because of the cost.  Most of us will

hit the limit that is allowed in each individual case, very quickly.  Then,

it's up to our system to take the full load on.  I say - it's cheaper than a

transplant; but, who is going to listen to me.  LOL

________________________________

 

Oh, I would never have thought that we Canadians actually have a medication OTC

before the Americans.

________________________________

 

No kidding, lactulose is over the counter in BC? Wow. Still a prescription drug

here in Colorado. Love, Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, March 2, 2012 5:23 PM

Subject: Re: RE: Difficult Question

 

Sadly,   Lackalose is not a prescribed medication, it's over the

counter.  It sure is where I live; but, I talk to a lot of Americans that say

the same thing.

________________________________

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

hello family,

i just finish reading the post of lactulose, man never in my life did

i get so sick, nothen like i had ever taken before. i didnt have

strengh enough to get out of bad, i was so sick at the stomach until i

wanted to die. NOW I AM NOT SAYING THIS WONDER DRUG, DONT WORK FOR

OTHERS, I JUST TELLING YOU WHAT IT DID FOR ME.......i thought it was

the magic bullet my doctor told me to take it so i spent my hard earn

35 dollars and i wind up throwing it in the gabage, it didnt make me

use the rest room like i was told...i had to result to over the counter

laxative....i have acid reflux, take nexium, i just knew this was the

magic bullet. turn out to be the worse time in my life. i am 61, i am

in chicago, i really thought my doctors knew, the right thing to do,

WRONG. you have to somehow reseaRch your self. i ask about the newer

treatment indian doctors told me, that he would put me on the med, but

he was sure it would kill me, this was at the university of chicago,

hospital, suppose to be number one...... wait no fast..the problem i

have with this diease is as follow, WHY DO THE DOCTORS TELL YOU, WE

CANT DO ANYTHING UNTIL SOMETHING HAPPEN, WHAT KIND OF S...T IS THAT?

you gonna wait until something happen before you react. our livers are

dieing by the day and you are waiting for something to happen like

liver cancer......THEY ARE PLAYING GOD....i have so much pain, and

weakness, i dont have swelling of the stomach or yellowing on the

eyes. i got minor promlems like high glycermic, dizzyness,

walking.....so many time i have been told i dont have suger, i wish and

i hope that will be the case on the next visit, but i doubt it.

enclosing the right side pain is really killing me. no tumor marker, i

am good for the time being just the pain and weakness, dizzyness,

walking like i am about to pass out. WELL ENOUGH OF MY RANTING.

PLEASE TAKE CARE, I WILL KEEP READING.... LOVE TOMMIE IN CHICAGO.

Re: RE: Difficult Question

& gt; & gt;

& gt; & gt; Dianne

& gt; & gt;

& gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

love for always!

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt; ________________________________

& gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

you are going

& gt; & gt;

& gt; & gt; through right now. I understand your pain and confusion. It

is such a difficult road when we love someone and we watch them

slipping away from us bit by bit daily.

& gt; & gt;

& gt; & gt; To answer your question, no this is not the time you sit by

and watch him wither up and die. It is the time you pool your

resources and reach out for help so you can help him cross over with

dignity and pain free and as comfortable as is humanly possible.

Hospice is an excellent choice for someone in your shoes. I don't say

that flippantly or with little regard.

& gt; & gt; I have walked your path to some degree. My husband of over 33

years went home on Jan. 26, 2009. He had NASH cirrhosis.

& gt; & gt;

& gt; & gt; As for signs the end is near, it's a difficult thing to put

your finger on. You spoke of him asking for pain meds, which was

highly out of character for him. The same happened with my husband.

He never wanted anything for pain until the last 2 weeks of his life.

He went in for a paracentesis and asked the doctor for something for

pain. He was prescribed Fentenyl transdermal patches. He had roundly

refused anything whatsoever for pain up until that point.

& gt; & gt;

& gt; & gt; The needle stick for his paracentesis never stopped leaking.

I had to change the bandage on it several times daily right up until

his last breath. He became more and more confused, slept almost 24/7,

could no longer eat or even sip water. He could not take his meds

because he could not swallow them. His balance was really bad and he

could barely stand up from his chair without assistance. He had no

bowel or bladder control but that became a sort of non-issue because

both his bowel and bladder just stopped working.

& gt; & gt;

& gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital.

Two days after, the Hospice people came to our house and talked to me

about what to expect. They tried to talk to my husband but he slept so

much, he couldn't form a sentence. They explained to me that he was

reacting in a very normal way for what he was going through.

& gt; & gt;

& gt; & gt; The next day I received what they called a 'comfort kit' from

FedEx. It contained meds that might become necessary in order to keep

him comfortable until his crossing was complete. Everything was in

either a dropper or a suppository form. The fluid filled his abdominal

cavity so quickly that he began to balloon up within 24 hours. There

was nothing else to be done for him. He had no desire for a transplant

and wanted to die quietly at home.

& gt; & gt;

& gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

days, perhaps even only a few hours, until the time comes for the final

crossing. I opened his after we had been home for about 9 days. I

called his Hospice nurse who came as soon as she could get there to

help me understand everything in the kit.

& gt; & gt;

& gt; & gt; He had refused to have a hospital bed, but was now incapable

of making his own decisions so I had them order a hospital bed. It was

delivered that afternoon. EMS staff arrived very early the next

morning and moved him from his chair into the bed. The Hospice nursing

assistant arrived soon afterwards and spent most of that day with us.

She bathed him and changed his bed linens even though he had just

gotten in bed. She wanted everything to be fresh so he could be

comfortable.

& gt; & gt;

& gt; & gt; I had already started using the meds from his kit. He had

morphine for pain (if one is allergic to morphine, the doctor will

order other pain meds), haldol for restlessness, some sort of drops to

dry up the secretions in his mouth so he wouldn't choke on them and one

other that I can not remember at the moment.

& gt; & gt;

& gt; & gt; When he was awake, however briefly, he still knew everyone who

came to visit up until Saturday morning. We had met when I was 15 and

had dated until I finished high school and got married that summer. He

had always signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

& gt; & gt;

& gt; & gt; On Saturday afternoon, he stopped calling my name and would

just moan when he needed me. I had moved the sofa into his room so I

could be there with him 24/7. He would call out " Di " when he wanted me

at his bedside. He kept trying to say something, but could not.

Finally, he moaned very deeply and I rushed to his bedside. I took his

hand and he opened his eyes. He had a tear rolling down his cheek. He

looked into my eyes, squeezed my hand and whispered 'forever and

always'. I began to cry as I leaned over him to kiss him and said " I

know baby, you love me forever and always and I love you too, forever

and always. " He never made a sound or opened his eyes after that.

& gt; & gt;

& gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

2009. I and my sisters were at his bedside and his Mom was asleep on

the sofa. Forever and always.........that's exactly where our love

lives now, in eternity.

& gt; & gt;

& gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

almost 24/7, cannot swallow, no appetite or thirst, inability to walk

without assistance, loss of bowel and bladder control with soon coming

shut down of both, confusion that worsens with every hour and for my

husband at least, huge fluid retention with a leak that grew daily.

& gt; & gt;

& gt; & gt; There are some things that happened with my husband after he

crossed that are hard to hear. However, if you would like to know

about it, please email me privately at diane.chandler.75@... . Many

would most likely not want to read about it on the board because it can

be quite gruesome.

& gt; & gt;

& gt; & gt; Please know my heart and my prayers are with you. Please

reach out to Hospice for help. You need it if you are to navigate this

difficult time with any hope of having peace afterwards. This is hard

work, the kind that will drain life from you and it does from him. I

wish I had involved Hospice much earlier and did so with my Daddy who

crossed last September and had been in Hospice for 10 months. He had

C.O.P.D.

& gt; & gt;

& gt; & gt; Email me if you would like to ask questions about the things I

spoke of earlier. Please take care of yourself. His journey is

drawing to a close; you still have many days, weeks, months, years to

go in your own. You will need your strength for the remainder of your

own journey.

& gt; & gt;

& gt; & gt; Many hugs...........

& gt; & gt;

& gt; & gt; Diane C from TN

& gt; & gt;

& gt; & gt;

[Guest guest]

________________________________

That sounds like a very reasonable thought!!  However, after it's cleaned out a

whole lot of bull - do ya think that the human species might start getting

along>>

 

If lactulose were OTC in the US,the country would be a better place.  The most

powerful, non addicting laxative  in the world isn't available unless you have

liver disease. I believe that less people would get liver disease in the first

place if every one had access to lactulose. Bobby

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Saturday, March 3, 2012 9:28 PM

Subject: Re: RE: Difficult Question

 

The remark is because we always are behind in many areas.  In fact, the

protease inhibitors for Hep C treatment, have been accepted since last May and

people are getting free of the insidious disease.  But, in Canada - we have to

wait until it clears all of the red tape!!  Health Canada has put their stamp

on it; but, the provinces have to approve because of the cost.  Most of us will

hit the limit that is allowed in each individual case, very quickly.  Then,

it's up to our system to take the full load on.  I say - it's cheaper than a

transplant; but, who is going to listen to me.  LOL

________________________________

 

Oh, I would never have thought that we Canadians actually have a medication OTC

before the Americans.

________________________________

 

No kidding, lactulose is over the counter in BC? Wow. Still a prescription drug

here in Colorado. Love, Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, March 2, 2012 5:23 PM

Subject: Re: RE: Difficult Question

 

Sadly,   Lackalose is not a prescribed medication, it's over the

counter.  It sure is where I live; but, I talk to a lot of Americans that say

the same thing.

________________________________

 

A few months prior to my dad's diagnosis, he started having limb swelling,

losing weight but gaining a big belly, having trouble keeping in/down food to

the point he was hesitant to eat. His GP kept telling him " it's your diabetes,

it's in your head, watch your diet, you don't need to go to a specialist " . 

Finally, dad pressed the issue and got into a GI doctor - he ran bloodwork and

then schedule dad for an ultrasound.  Dad didn't want to wait and after that

went to the ER.  His GP was PISSED at him and made it a point to tell him

that.  However, that hospital's doctor pronounced the initial diagnosis like

within 2 weeks, and then he was transported to the OU Medical Center to

confirm  ESLD and Liver Cancer.  The medical center doctors and staff actually

listened to my dad and made sure we understood.  They provided very good

care.  He went to the medical center twice.

He was in and out of the ER at their local hospital after his diagnosis until

his passing.  The doctor refused to give him any lactulose the first time

without reaching his GP who didn't answer the phone for like 6-8 hours.  They

just let Dad lie in triage after running tests and finding his ammonia levels

were in the 300s.  We were told to be patient.  Finally, the staff contacted a

GI doctor that my dad had seen and I think that's what caused his medication to

begin.  At one point, instead of seeing my dad and giving him something for a

little indigestion he was having, his GP ordered MORPHINE.  Dad asked him why

because he wasn't in pain.  At that point, I knew the doctor had written my dad

off as a terminal and difficult patient. The hospital staff was atrioucious and

probably understaffed.  They forgot to bring and administer my dad's

medications.  At one point, Dad fell while trying to go to the bathroom (he

didn't want to bother anyone

even though he could barely walk) and he slipped and fell while trying to sit

down on the potty.  Well, he accidentally messed himself and whenever he fell,

you can guess what happened.  While falling, he also scraped up his arm.  He

finally hit the " help " button in the bathroom whenever he was able to crawl to

it.  They picked him up, didn't wipe him down - simply change his gown, and

bandaged the wound.  However, after he told my Dad to ask for help, we took his

bandage off (because at this point the gauze looked seeped through and had

probably been on and not changed by staff for 4-5 hours).  What did we find? 

The wound had fecal matter it in and judging by the how he was bandaged, the

wound was not cleaned before the bandage was applied.  I went off on the

staff.  They also tried to give him food that he was charted as not to have. 

He was good about saying " No " to that..and asking for something else. 

My father was a little stubborn, but overall - he was a good patient and a good

man.  This type of care is really something that my father did not deserve. 

He was always helping other people with thing, he even took a homeless man to

mcdonald's once to buy him a couple of value meals. No one deserves this

treatment.

I was unable to go to Mayo with my family whenever my father went for a final

transplant evaluation after the medical center had turned him down.  They were

fast and thorough and caring.  I wish Dad had went there to start with.

My advice - explore your options if you have them.

 

Sincerely,

E. Bassett

>________________________________

>

>To: " livercirrhosissupport "

<livercirrhosissupport >

>Sent: Friday, March 2, 2012 9:35 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Wow.  I am so upset with doctors that really don't care about people.

 Hopefully someday they themselves will be in the same position so they know

how it feels to be treated like a number.  What I have heard about some doctors

that when they become ill with cancer they themselves will not take the

treatments but rather just go home to die naturally.  Makes you wonder.  Maybe

they are already experiencing what they put others through and don't want that

for themselves.  Not all are this way but i have sure met up with a few who

don't give a rip.

>

> Z

>

>________________________________

>

>To: livercirrhosissupport

>Sent: Friday, March 2, 2012 12:08:09 AM

>Subject: Re: RE: Difficult Question

>

>

> 

>Thanks to all of you. Your responses have helped me understand better what to

look for in order to prepare myself, and helped me realize this is something i

am probably not equipped to deal with on my own. It means so much that you are

willing to share your stories so that others can learn from them. Thank you

very much, all of you!

>

>I asked the doctor today about a hospice consult. Her response way " why " ?

which really took me back some. It almost knocked me down. All I could say was

" because i don't know what to do to help him anymore " . She told me that they

were uping his meds and that should help him keep the ammonia down from his

brain, so as the confusion wouldn't be so bad. What about the sleeping? The

fact he is basically bed ridden? That he has swells up so badly? What about the

fact that he can't urinate most days or that he sleeps all the time?

>

>I'm beginning to think that allowing him to only let UTMB handle his liver was

a HUGE mistake. He doesn't have just a doctor there, and it is just which ever

doctor is on duty that gets him. They act like this is normal.

>

>

>>

>> Beautiful, Dianne. Sniff sniff.

>> .

>>

>> Re: RE: Difficult Question

>>

>> Dianne

>>

>> Ya, I'm crying!!  But, what an absolutely beautiful story of love for

always!

>>

>>

>>

>> ________________________________

>> Hi Kim. First of all let me say that I am so sorry for all you are going

>>

>> through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us bit

by bit daily.

>>

>> To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out for

help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for someone

in your shoes. I don't say that flippantly or with little regard.

>> I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

>>

>> As for signs the end is near, it's a difficult thing to put your finger on.

You spoke of him asking for pain meds, which was highly out of character for

him. The same happened with my husband. He never wanted anything for pain

until the last 2 weeks of his life. He went in for a paracentesis and asked the

doctor for something for pain. He was prescribed Fentenyl transdermal patches.

He had roundly refused anything whatsoever for pain up until that point.

>>

>> The needle stick for his paracentesis never stopped leaking. I had to change

the bandage on it several times daily right up until his last breath. He became

more and more confused, slept almost 24/7, could no longer eat or even sip

water. He could not take his meds because he could not swallow them. His

balance was really bad and he could barely stand up from his chair without

assistance. He had no bowel or bladder control but that became a sort of

non-issue because both his bowel and bladder just stopped working.

>>

>> At the hospital for the paracentesis, I asked for the Hospice consultation.

He was admitted to Hospice before we left the hospital. Two days after, the

Hospice people came to our house and talked to me about what to expect. They

tried to talk to my husband but he slept so much, he couldn't form a sentence.

They explained to me that he was reacting in a very normal way for what he was

going through.

>>

>> The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for him.

He had no desire for a transplant and wanted to die quietly at home.

>>

>> Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I opened

his after we had been home for about 9 days. I called his Hospice nurse who

came as soon as she could get there to help me understand everything in the kit.

>>

>> He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him from his

chair into the bed. The Hospice nursing assistant arrived soon afterwards and

spent most of that day with us. She bathed him and changed his bed linens even

though he had just gotten in bed. She wanted everything to be fresh so he could

be comfortable.

>>

>> I had already started using the meds from his kit. He had morphine for pain

(if one is allergic to morphine, the doctor will order other pain meds), haldol

for restlessness, some sort of drops to dry up the secretions in his mouth so he

wouldn't choke on them and one other that I can not remember at the moment.

>>

>> When he was awake, however briefly, he still knew everyone who came to visit

up until Saturday morning. We had met when I was 15 and had dated until I

finished high school and got married that summer. He had always signed anything

he ever wrote to me " I love you, forever and always.....Terry " .

>>

>> On Saturday afternoon, he stopped calling my name and would just moan when he

needed me. I had moved the sofa into his room so I could be there with him

24/7. He would call out " Di " when he wanted me at his bedside. He kept trying

to say something, but could not. Finally, he moaned very deeply and I rushed to

his bedside. I took his hand and he opened his eyes. He had a tear rolling

down his cheek. He looked into my eyes, squeezed my hand and whispered 'forever

and always'. I began to cry as I leaned over him to kiss him and said " I know

baby, you love me forever and always and I love you too, forever and always. "

He never made a sound or opened his eyes after that.

>>

>> He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever and

always.........that's exactly where our love lives now, in eternity.

>>

>> Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7, cannot

swallow, no appetite or thirst, inability to walk without assistance, loss of

bowel and bladder control with soon coming shut down of both, confusion that

worsens with every hour and for my husband at least, huge fluid retention with a

leak that grew daily.

>>

>> There are some things that happened with my husband after he crossed that are

hard to hear. However, if you would like to know about it, please email me

privately at diane.chandler.75@... . Many would most likely not want to read

about it on the board because it can be quite gruesome.

>>

>> Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time with

any hope of having peace afterwards. This is hard work, the kind that will

drain life from you and it does from him. I wish I had involved Hospice much

earlier and did so with my Daddy who crossed last September and had been in

Hospice for 10 months. He had C.O.P.D.

>>

>> Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close; you

still have many days, weeks, months, years to go in your own. You will need

your strength for the remainder of your own journey.

>>

>> Many hugs...........

>>

>> Diane C from TN

>>

>>

[Guest guest]

From what I have learned that where there is pain there is inflammation.  What

you want to do is get rid of it.  Stay away from sugar as that creates

inflammation.  I f you go to

http://hepatitiscnewdrugs.blogspot.com/2011/06/inflammation-and-diet-inflammator\

y-and.html  there are a variety of foods that you can eat for this.  Give this

a look.

Z

________________________________

To: livercirrhosissupport

Sent: Sunday, March 4, 2012 1:50:26 AM

Subject: Re: RE: Difficult Question

 

hello family,

i just finish reading the post of lactulose, man never in my life did

i get so sick, nothen like i had ever taken before. i didnt have

strengh enough to get out of bad, i was so sick at the stomach until i

wanted to die. NOW I AM NOT SAYING THIS WONDER DRUG, DONT WORK FOR

OTHERS, I JUST TELLING YOU WHAT IT DID FOR ME.......i thought it was

the magic bullet my doctor told me to take it so i spent my hard earn

35 dollars and i wind up throwing it in the gabage, it didnt make me

use the rest room like i was told...i had to result to over the counter

laxative....i have acid reflux, take nexium, i just knew this was the

magic bullet. turn out to be the worse time in my life. i am 61, i am

in chicago, i really thought my doctors knew, the right thing to do,

WRONG. you have to somehow reseaRch your self. i ask about the newer

treatment indian doctors told me, that he would put me on the med, but

he was sure it would kill me, this was at the university of chicago,

hospital, suppose to be number one...... wait no fast..the problem i

have with this diease is as follow, WHY DO THE DOCTORS TELL YOU, WE

CANT DO ANYTHING UNTIL SOMETHING HAPPEN, WHAT KIND OF S...T IS THAT?

you gonna wait until something happen before you react. our livers are

dieing by the day and you are waiting for something to happen like

liver cancer......THEY ARE PLAYING GOD....i have so much pain, and

weakness, i dont have swelling of the stomach or yellowing on the

eyes. i got minor promlems like high glycermic, dizzyness,

walking.....so many time i have been told i dont have suger, i wish and

i hope that will be the case on the next visit, but i doubt it.

enclosing the right side pain is really killing me. no tumor marker, i

am good for the time being just the pain and weakness, dizzyness,

walking like i am about to pass out. WELL ENOUGH OF MY RANTING.

PLEASE TAKE CARE, I WILL KEEP READING.... LOVE TOMMIE IN CHICAGO.

Re: RE: Difficult Question

& gt; & gt;

& gt; & gt; Dianne

& gt; & gt;

& gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

love for always!

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt; ________________________________

& gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

you are going

& gt; & gt;

& gt; & gt; through right now. I understand your pain and confusion. It

is such a difficult road when we love someone and we watch them

slipping away from us bit by bit daily.

& gt; & gt;

& gt; & gt; To answer your question, no this is not the time you sit by

and watch him wither up and die. It is the time you pool your

resources and reach out for help so you can help him cross over with

dignity and pain free and as comfortable as is humanly possible.

Hospice is an excellent choice for someone in your shoes. I don't say

that flippantly or with little regard.

& gt; & gt; I have walked your path to some degree. My husband of over 33

years went home on Jan. 26, 2009. He had NASH cirrhosis.

& gt; & gt;

& gt; & gt; As for signs the end is near, it's a difficult thing to put

your finger on. You spoke of him asking for pain meds, which was

highly out of character for him. The same happened with my husband.

He never wanted anything for pain until the last 2 weeks of his life.

He went in for a paracentesis and asked the doctor for something for

pain. He was prescribed Fentenyl transdermal patches. He had roundly

refused anything whatsoever for pain up until that point.

& gt; & gt;

& gt; & gt; The needle stick for his paracentesis never stopped leaking.

I had to change the bandage on it several times daily right up until

his last breath. He became more and more confused, slept almost 24/7,

could no longer eat or even sip water. He could not take his meds

because he could not swallow them. His balance was really bad and he

could barely stand up from his chair without assistance. He had no

bowel or bladder control but that became a sort of non-issue because

both his bowel and bladder just stopped working.

& gt; & gt;

& gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital.

Two days after, the Hospice people came to our house and talked to me

about what to expect. They tried to talk to my husband but he slept so

much, he couldn't form a sentence. They explained to me that he was

reacting in a very normal way for what he was going through.

& gt; & gt;

& gt; & gt; The next day I received what they called a 'comfort kit' from

FedEx. It contained meds that might become necessary in order to keep

him comfortable until his crossing was complete. Everything was in

either a dropper or a suppository form. The fluid filled his abdominal

cavity so quickly that he began to balloon up within 24 hours. There

was nothing else to be done for him. He had no desire for a transplant

and wanted to die quietly at home.

& gt; & gt;

& gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

days, perhaps even only a few hours, until the time comes for the final

crossing. I opened his after we had been home for about 9 days. I

called his Hospice nurse who came as soon as she could get there to

help me understand everything in the kit.

& gt; & gt;

& gt; & gt; He had refused to have a hospital bed, but was now incapable

of making his own decisions so I had them order a hospital bed. It was

delivered that afternoon. EMS staff arrived very early the next

morning and moved him from his chair into the bed. The Hospice nursing

assistant arrived soon afterwards and spent most of that day with us.

She bathed him and changed his bed linens even though he had just

gotten in bed. She wanted everything to be fresh so he could be

comfortable.

& gt; & gt;

& gt; & gt; I had already started using the meds from his kit. He had

morphine for pain (if one is allergic to morphine, the doctor will

order other pain meds), haldol for restlessness, some sort of drops to

dry up the secretions in his mouth so he wouldn't choke on them and one

other that I can not remember at the moment.

& gt; & gt;

& gt; & gt; When he was awake, however briefly, he still knew everyone who

came to visit up until Saturday morning. We had met when I was 15 and

had dated until I finished high school and got married that summer. He

had always signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

& gt; & gt;

& gt; & gt; On Saturday afternoon, he stopped calling my name and would

just moan when he needed me. I had moved the sofa into his room so I

could be there with him 24/7. He would call out " Di " when he wanted me

at his bedside. He kept trying to say something, but could not.

Finally, he moaned very deeply and I rushed to his bedside. I took his

hand and he opened his eyes. He had a tear rolling down his cheek. He

looked into my eyes, squeezed my hand and whispered 'forever and

always'. I began to cry as I leaned over him to kiss him and said " I

know baby, you love me forever and always and I love you too, forever

and always. " He never made a sound or opened his eyes after that.

& gt; & gt;

& gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

2009. I and my sisters were at his bedside and his Mom was asleep on

the sofa. Forever and always.........that's exactly where our love

lives now, in eternity.

& gt; & gt;

& gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

almost 24/7, cannot swallow, no appetite or thirst, inability to walk

without assistance, loss of bowel and bladder control with soon coming

shut down of both, confusion that worsens with every hour and for my

husband at least, huge fluid retention with a leak that grew daily.

& gt; & gt;

& gt; & gt; There are some things that happened with my husband after he

crossed that are hard to hear. However, if you would like to know

about it, please email me privately at diane.chandler.75@... . Many

would most likely not want to read about it on the board because it can

be quite gruesome.

& gt; & gt;

& gt; & gt; Please know my heart and my prayers are with you. Please

reach out to Hospice for help. You need it if you are to navigate this

difficult time with any hope of having peace afterwards. This is hard

work, the kind that will drain life from you and it does from him. I

wish I had involved Hospice much earlier and did so with my Daddy who

crossed last September and had been in Hospice for 10 months. He had

C.O.P.D.

& gt; & gt;

& gt; & gt; Email me if you would like to ask questions about the things I

spoke of earlier. Please take care of yourself. His journey is

drawing to a close; you still have many days, weeks, months, years to

go in your own. You will need your strength for the remainder of your

own journey.

& gt; & gt;

& gt; & gt; Many hugs...........

& gt; & gt;

& gt; & gt; Diane C from TN

& gt; & gt;

& gt; & gt;

[Guest guest]

I don't need Lactulose yet; but, I've given it a good try and don't get any

extra action.  Honestly, I think it would take 1/2 the bottle in my case.

I'm sorry to tell you; but, those AFP tests are far from reliable.  In 2010, 2

months before a liver resection, my AFP was normal.  Only the last one, in Aug

last year, was high.  Fortunately, I was having the Ultra Sounds because of the

clinical trial I was participating in.  I firmly believe that, that trial gave

me some more time here.  Drs were pretty certain that I had HCC, 3 months

before completing that trial.  If I had not been in the study, there would have

been no thought to do a U/S.

Hey, I was thinking really hard about flying to Chicago in May.  For a concert

that is on my bucket list.  Also, I have an online friend that lives there. 

However, reality put a stop to that idea!!  I could never be that far from the

border in Canada.  No one would probably allow me any travel insurance; but, if

they did, I wouldn't be able to afford it.  So, I'm going to Toronto in June!!

Gloria

________________________________

 

hello family,

i just finish reading the post of lactulose, man never in my life did

i get so sick, nothen like i had ever taken before. i didnt have

strengh enough to get out of bad, i was so sick at the stomach until i

wanted to die. NOW I AM NOT SAYING THIS WONDER DRUG, DONT WORK FOR

OTHERS, I JUST TELLING YOU WHAT IT DID FOR ME.......i thought it was

the magic bullet my doctor told me to take it so i spent my hard earn

35 dollars and i wind up throwing it in the gabage, it didnt make me

use the rest room like i was told...i had to result to over the counter

laxative....i have acid reflux, take nexium, i just knew this was the

magic bullet. turn out to be the worse time in my life. i am 61, i am

in chicago, i really thought my doctors knew, the right thing to do,

WRONG. you have to somehow reseaRch your self. i ask about the newer

treatment indian doctors told me, that he would put me on the med, but

he was sure it would kill me, this was at the university of chicago,

hospital, suppose to be number one...... wait no fast..the problem i

have with this diease is as follow, WHY DO THE DOCTORS TELL YOU, WE

CANT DO ANYTHING UNTIL SOMETHING HAPPEN, WHAT KIND OF S...T IS THAT?

you gonna wait until something happen before you react. our livers are

dieing by the day and you are waiting for something to happen like

liver cancer......THEY ARE PLAYING GOD....i have so much pain, and

weakness, i dont have swelling of the stomach or yellowing on the

eyes. i got minor promlems like high glycermic, dizzyness,

walking.....so many time i have been told i dont have suger, i wish and

i hope that will be the case on the next visit, but i doubt it.

enclosing the right side pain is really killing me. no tumor marker, i

am good for the time being just the pain and weakness, dizzyness,

walking like i am about to pass out. WELL ENOUGH OF MY RANTING.

PLEASE TAKE CARE, I WILL KEEP READING.... LOVE TOMMIE IN CHICAGO.

Re: RE: Difficult Question

& gt; & gt;

& gt; & gt; Dianne

& gt; & gt;

& gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

love for always!

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt; ________________________________

& gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

you are going

& gt; & gt;

& gt; & gt; through right now. I understand your pain and confusion. It

is such a difficult road when we love someone and we watch them

slipping away from us bit by bit daily.

& gt; & gt;

& gt; & gt; To answer your question, no this is not the time you sit by

and watch him wither up and die. It is the time you pool your

resources and reach out for help so you can help him cross over with

dignity and pain free and as comfortable as is humanly possible.

Hospice is an excellent choice for someone in your shoes. I don't say

that flippantly or with little regard.

& gt; & gt; I have walked your path to some degree. My husband of over 33

years went home on Jan. 26, 2009. He had NASH cirrhosis.

& gt; & gt;

& gt; & gt; As for signs the end is near, it's a difficult thing to put

your finger on. You spoke of him asking for pain meds, which was

highly out of character for him. The same happened with my husband.

He never wanted anything for pain until the last 2 weeks of his life.

He went in for a paracentesis and asked the doctor for something for

pain. He was prescribed Fentenyl transdermal patches. He had roundly

refused anything whatsoever for pain up until that point.

& gt; & gt;

& gt; & gt; The needle stick for his paracentesis never stopped leaking.

I had to change the bandage on it several times daily right up until

his last breath. He became more and more confused, slept almost 24/7,

could no longer eat or even sip water. He could not take his meds

because he could not swallow them. His balance was really bad and he

could barely stand up from his chair without assistance. He had no

bowel or bladder control but that became a sort of non-issue because

both his bowel and bladder just stopped working.

& gt; & gt;

& gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital.

Two days after, the Hospice people came to our house and talked to me

about what to expect. They tried to talk to my husband but he slept so

much, he couldn't form a sentence. They explained to me that he was

reacting in a very normal way for what he was going through.

& gt; & gt;

& gt; & gt; The next day I received what they called a 'comfort kit' from

FedEx. It contained meds that might become necessary in order to keep

him comfortable until his crossing was complete. Everything was in

either a dropper or a suppository form. The fluid filled his abdominal

cavity so quickly that he began to balloon up within 24 hours. There

was nothing else to be done for him. He had no desire for a transplant

and wanted to die quietly at home.

& gt; & gt;

& gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

days, perhaps even only a few hours, until the time comes for the final

crossing. I opened his after we had been home for about 9 days. I

called his Hospice nurse who came as soon as she could get there to

help me understand everything in the kit.

& gt; & gt;

& gt; & gt; He had refused to have a hospital bed, but was now incapable

of making his own decisions so I had them order a hospital bed. It was

delivered that afternoon. EMS staff arrived very early the next

morning and moved him from his chair into the bed. The Hospice nursing

assistant arrived soon afterwards and spent most of that day with us.

She bathed him and changed his bed linens even though he had just

gotten in bed. She wanted everything to be fresh so he could be

comfortable.

& gt; & gt;

& gt; & gt; I had already started using the meds from his kit. He had

morphine for pain (if one is allergic to morphine, the doctor will

order other pain meds), haldol for restlessness, some sort of drops to

dry up the secretions in his mouth so he wouldn't choke on them and one

other that I can not remember at the moment.

& gt; & gt;

& gt; & gt; When he was awake, however briefly, he still knew everyone who

came to visit up until Saturday morning. We had met when I was 15 and

had dated until I finished high school and got married that summer. He

had always signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

& gt; & gt;

& gt; & gt; On Saturday afternoon, he stopped calling my name and would

just moan when he needed me. I had moved the sofa into his room so I

could be there with him 24/7. He would call out " Di " when he wanted me

at his bedside. He kept trying to say something, but could not.

Finally, he moaned very deeply and I rushed to his bedside. I took his

hand and he opened his eyes. He had a tear rolling down his cheek. He

looked into my eyes, squeezed my hand and whispered 'forever and

always'. I began to cry as I leaned over him to kiss him and said " I

know baby, you love me forever and always and I love you too, forever

and always. " He never made a sound or opened his eyes after that.

& gt; & gt;

& gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

2009. I and my sisters were at his bedside and his Mom was asleep on

the sofa. Forever and always.........that's exactly where our love

lives now, in eternity.

& gt; & gt;

& gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

almost 24/7, cannot swallow, no appetite or thirst, inability to walk

without assistance, loss of bowel and bladder control with soon coming

shut down of both, confusion that worsens with every hour and for my

husband at least, huge fluid retention with a leak that grew daily.

& gt; & gt;

& gt; & gt; There are some things that happened with my husband after he

crossed that are hard to hear. However, if you would like to know

about it, please email me privately at diane.chandler.75@... . Many

would most likely not want to read about it on the board because it can

be quite gruesome.

& gt; & gt;

& gt; & gt; Please know my heart and my prayers are with you. Please

reach out to Hospice for help. You need it if you are to navigate this

difficult time with any hope of having peace afterwards. This is hard

work, the kind that will drain life from you and it does from him. I

wish I had involved Hospice much earlier and did so with my Daddy who

crossed last September and had been in Hospice for 10 months. He had

C.O.P.D.

& gt; & gt;

& gt; & gt; Email me if you would like to ask questions about the things I

spoke of earlier. Please take care of yourself. His journey is

drawing to a close; you still have many days, weeks, months, years to

go in your own. You will need your strength for the remainder of your

own journey.

& gt; & gt;

& gt; & gt; Many hugs...........

& gt; & gt;

& gt; & gt; Diane C from TN

& gt; & gt;

& gt; & gt;

[Guest guest]

Lactulose really has worked for my husband. But he does still on occasion get

constipated.I asked if there was a different medication that may help him some

more. They said lactulose was the best, but now i am wondering if there is

something else that would work as well, or maybe a little better. I don;t want

to change it because right now, its still working. one just never knows what the

future holds.

Kim

> & gt; & gt;

> & gt; & gt; Beautiful, Dianne. Sniff sniff.

> & gt; & gt; .

> & gt; & gt;

> & gt; & gt; Re: RE: Difficult Question

> & gt; & gt;

> & gt; & gt; Dianne

> & gt; & gt;

> & gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

> love for always!

> & gt; & gt;

> & gt; & gt;

> & gt; & gt;

> & gt; & gt; ________________________________

> & gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

> you are going

> & gt; & gt;

> & gt; & gt; through right now. I understand your pain and confusion. It

> is such a difficult road when we love someone and we watch them

> slipping away from us bit by bit daily.

> & gt; & gt;

> & gt; & gt; To answer your question, no this is not the time you sit by

> and watch him wither up and die. It is the time you pool your

> resources and reach out for help so you can help him cross over with

> dignity and pain free and as comfortable as is humanly possible.

> Hospice is an excellent choice for someone in your shoes. I don't say

> that flippantly or with little regard.

> & gt; & gt; I have walked your path to some degree. My husband of over 33

> years went home on Jan. 26, 2009. He had NASH cirrhosis.

> & gt; & gt;

> & gt; & gt; As for signs the end is near, it's a difficult thing to put

> your finger on. You spoke of him asking for pain meds, which was

> highly out of character for him. The same happened with my husband.

> He never wanted anything for pain until the last 2 weeks of his life.

> He went in for a paracentesis and asked the doctor for something for

> pain. He was prescribed Fentenyl transdermal patches. He had roundly

> refused anything whatsoever for pain up until that point.

> & gt; & gt;

> & gt; & gt; The needle stick for his paracentesis never stopped leaking.

> I had to change the bandage on it several times daily right up until

> his last breath. He became more and more confused, slept almost 24/7,

> could no longer eat or even sip water. He could not take his meds

> because he could not swallow them. His balance was really bad and he

> could barely stand up from his chair without assistance. He had no

> bowel or bladder control but that became a sort of non-issue because

> both his bowel and bladder just stopped working.

> & gt; & gt;

> & gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

> consultation. He was admitted to Hospice before we left the hospital.

> Two days after, the Hospice people came to our house and talked to me

> about what to expect. They tried to talk to my husband but he slept so

> much, he couldn't form a sentence. They explained to me that he was

> reacting in a very normal way for what he was going through.

> & gt; & gt;

> & gt; & gt; The next day I received what they called a 'comfort kit' from

> FedEx. It contained meds that might become necessary in order to keep

> him comfortable until his crossing was complete. Everything was in

> either a dropper or a suppository form. The fluid filled his abdominal

> cavity so quickly that he began to balloon up within 24 hours. There

> was nothing else to be done for him. He had no desire for a transplant

> and wanted to die quietly at home.

> & gt; & gt;

> & gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

> days, perhaps even only a few hours, until the time comes for the final

> crossing. I opened his after we had been home for about 9 days. I

> called his Hospice nurse who came as soon as she could get there to

> help me understand everything in the kit.

> & gt; & gt;

> & gt; & gt; He had refused to have a hospital bed, but was now incapable

> of making his own decisions so I had them order a hospital bed. It was

> delivered that afternoon. EMS staff arrived very early the next

> morning and moved him from his chair into the bed. The Hospice nursing

> assistant arrived soon afterwards and spent most of that day with us.

> She bathed him and changed his bed linens even though he had just

> gotten in bed. She wanted everything to be fresh so he could be

> comfortable.

> & gt; & gt;

> & gt; & gt; I had already started using the meds from his kit. He had

> morphine for pain (if one is allergic to morphine, the doctor will

> order other pain meds), haldol for restlessness, some sort of drops to

> dry up the secretions in his mouth so he wouldn't choke on them and one

> other that I can not remember at the moment.

> & gt; & gt;

> & gt; & gt; When he was awake, however briefly, he still knew everyone who

> came to visit up until Saturday morning. We had met when I was 15 and

> had dated until I finished high school and got married that summer. He

> had always signed anything he ever wrote to me " I love you, forever and

> always.....Terry " .

> & gt; & gt;

> & gt; & gt; On Saturday afternoon, he stopped calling my name and would

> just moan when he needed me. I had moved the sofa into his room so I

> could be there with him 24/7. He would call out " Di " when he wanted me

> at his bedside. He kept trying to say something, but could not.

> Finally, he moaned very deeply and I rushed to his bedside. I took his

> hand and he opened his eyes. He had a tear rolling down his cheek. He

> looked into my eyes, squeezed my hand and whispered 'forever and

> always'. I began to cry as I leaned over him to kiss him and said " I

> know baby, you love me forever and always and I love you too, forever

> and always. " He never made a sound or opened his eyes after that.

> & gt; & gt;

> & gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

> 2009. I and my sisters were at his bedside and his Mom was asleep on

> the sofa. Forever and always.........that's exactly where our love

> lives now, in eternity.

> & gt; & gt;

> & gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

> almost 24/7, cannot swallow, no appetite or thirst, inability to walk

> without assistance, loss of bowel and bladder control with soon coming

> shut down of both, confusion that worsens with every hour and for my

> husband at least, huge fluid retention with a leak that grew daily.

> & gt; & gt;

> & gt; & gt; There are some things that happened with my husband after he

> crossed that are hard to hear. However, if you would like to know

> about it, please email me privately at diane.chandler.75@ . Many

> would most likely not want to read about it on the board because it can

> be quite gruesome.

> & gt; & gt;

> & gt; & gt; Please know my heart and my prayers are with you. Please

> reach out to Hospice for help. You need it if you are to navigate this

> difficult time with any hope of having peace afterwards. This is hard

> work, the kind that will drain life from you and it does from him. I

> wish I had involved Hospice much earlier and did so with my Daddy who

> crossed last September and had been in Hospice for 10 months. He had

> C.O.P.D.

> & gt; & gt;

> & gt; & gt; Email me if you would like to ask questions about the things I

> spoke of earlier. Please take care of yourself. His journey is

> drawing to a close; you still have many days, weeks, months, years to

> go in your own. You will need your strength for the remainder of your

> own journey.

> & gt; & gt;

> & gt; & gt; Many hugs...........

> & gt; & gt;

> & gt; & gt; Diane C from TN

> & gt; & gt;

> & gt; & gt;

[Guest guest]

Curious...how does sugar help create inflammation. We haven't been told to

reduce his sugar intake. He eats a bucket of sugar with his tea!

> & gt; & gt;

> & gt; & gt; Beautiful, Dianne. Sniff sniff.

> & gt; & gt; .

> & gt; & gt;

> & gt; & gt; Re: RE: Difficult Question

> & gt; & gt;

> & gt; & gt; Dianne

> & gt; & gt;

> & gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

> love for always!

> & gt; & gt;

> & gt; & gt;

> & gt; & gt;

> & gt; & gt; ________________________________

> & gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

> you are going

> & gt; & gt;

> & gt; & gt; through right now. I understand your pain and confusion. It

> is such a difficult road when we love someone and we watch them

> slipping away from us bit by bit daily.

> & gt; & gt;

> & gt; & gt; To answer your question, no this is not the time you sit by

> and watch him wither up and die. It is the time you pool your

> resources and reach out for help so you can help him cross over with

> dignity and pain free and as comfortable as is humanly possible.

> Hospice is an excellent choice for someone in your shoes. I don't say

> that flippantly or with little regard.

> & gt; & gt; I have walked your path to some degree. My husband of over 33

> years went home on Jan. 26, 2009. He had NASH cirrhosis.

> & gt; & gt;

> & gt; & gt; As for signs the end is near, it's a difficult thing to put

> your finger on. You spoke of him asking for pain meds, which was

> highly out of character for him. The same happened with my husband.

> He never wanted anything for pain until the last 2 weeks of his life.

> He went in for a paracentesis and asked the doctor for something for

> pain. He was prescribed Fentenyl transdermal patches. He had roundly

> refused anything whatsoever for pain up until that point.

> & gt; & gt;

> & gt; & gt; The needle stick for his paracentesis never stopped leaking.

> I had to change the bandage on it several times daily right up until

> his last breath. He became more and more confused, slept almost 24/7,

> could no longer eat or even sip water. He could not take his meds

> because he could not swallow them. His balance was really bad and he

> could barely stand up from his chair without assistance. He had no

> bowel or bladder control but that became a sort of non-issue because

> both his bowel and bladder just stopped working.

> & gt; & gt;

> & gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

> consultation. He was admitted to Hospice before we left the hospital.

> Two days after, the Hospice people came to our house and talked to me

> about what to expect. They tried to talk to my husband but he slept so

> much, he couldn't form a sentence. They explained to me that he was

> reacting in a very normal way for what he was going through.

> & gt; & gt;

> & gt; & gt; The next day I received what they called a 'comfort kit' from

> FedEx. It contained meds that might become necessary in order to keep

> him comfortable until his crossing was complete. Everything was in

> either a dropper or a suppository form. The fluid filled his abdominal

> cavity so quickly that he began to balloon up within 24 hours. There

> was nothing else to be done for him. He had no desire for a transplant

> and wanted to die quietly at home.

> & gt; & gt;

> & gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

> days, perhaps even only a few hours, until the time comes for the final

> crossing. I opened his after we had been home for about 9 days. I

> called his Hospice nurse who came as soon as she could get there to

> help me understand everything in the kit.

> & gt; & gt;

> & gt; & gt; He had refused to have a hospital bed, but was now incapable

> of making his own decisions so I had them order a hospital bed. It was

> delivered that afternoon. EMS staff arrived very early the next

> morning and moved him from his chair into the bed. The Hospice nursing

> assistant arrived soon afterwards and spent most of that day with us.

> She bathed him and changed his bed linens even though he had just

> gotten in bed. She wanted everything to be fresh so he could be

> comfortable.

> & gt; & gt;

> & gt; & gt; I had already started using the meds from his kit. He had

> morphine for pain (if one is allergic to morphine, the doctor will

> order other pain meds), haldol for restlessness, some sort of drops to

> dry up the secretions in his mouth so he wouldn't choke on them and one

> other that I can not remember at the moment.

> & gt; & gt;

> & gt; & gt; When he was awake, however briefly, he still knew everyone who

> came to visit up until Saturday morning. We had met when I was 15 and

> had dated until I finished high school and got married that summer. He

> had always signed anything he ever wrote to me " I love you, forever and

> always.....Terry " .

> & gt; & gt;

> & gt; & gt; On Saturday afternoon, he stopped calling my name and would

> just moan when he needed me. I had moved the sofa into his room so I

> could be there with him 24/7. He would call out " Di " when he wanted me

> at his bedside. He kept trying to say something, but could not.

> Finally, he moaned very deeply and I rushed to his bedside. I took his

> hand and he opened his eyes. He had a tear rolling down his cheek. He

> looked into my eyes, squeezed my hand and whispered 'forever and

> always'. I began to cry as I leaned over him to kiss him and said " I

> know baby, you love me forever and always and I love you too, forever

> and always. " He never made a sound or opened his eyes after that.

> & gt; & gt;

> & gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

> 2009. I and my sisters were at his bedside and his Mom was asleep on

> the sofa. Forever and always.........that's exactly where our love

> lives now, in eternity.

> & gt; & gt;

> & gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

> almost 24/7, cannot swallow, no appetite or thirst, inability to walk

> without assistance, loss of bowel and bladder control with soon coming

> shut down of both, confusion that worsens with every hour and for my

> husband at least, huge fluid retention with a leak that grew daily.

> & gt; & gt;

> & gt; & gt; There are some things that happened with my husband after he

> crossed that are hard to hear. However, if you would like to know

> about it, please email me privately at diane.chandler.75@ . Many

> would most likely not want to read about it on the board because it can

> be quite gruesome.

> & gt; & gt;

> & gt; & gt; Please know my heart and my prayers are with you. Please

> reach out to Hospice for help. You need it if you are to navigate this

> difficult time with any hope of having peace afterwards. This is hard

> work, the kind that will drain life from you and it does from him. I

> wish I had involved Hospice much earlier and did so with my Daddy who

> crossed last September and had been in Hospice for 10 months. He had

> C.O.P.D.

> & gt; & gt;

> & gt; & gt; Email me if you would like to ask questions about the things I

> spoke of earlier. Please take care of yourself. His journey is

> drawing to a close; you still have many days, weeks, months, years to

> go in your own. You will need your strength for the remainder of your

> own journey.

> & gt; & gt;

> & gt; & gt; Many hugs...........

> & gt; & gt;

> & gt; & gt; Diane C from TN

> & gt; & gt;

> & gt; & gt;

[Guest guest]

All I know is that sugar creates an acidic environment and that goes along with

inflammation and cancer also loves the acidic state our bodies are in.  It is

hard to stay away from sugar as it is in everything but I use either honey which

is better or Stevia which is a natural sugar.  You also use less of the Stevia

because it is very sweet.  You can get it in packets, powder for which is very

potent and for 1 cup of regular sugar you only need 1/4 tsp of the powder.  You

can also get it in a liquid.  For a mug of tea or hot lemon I use 5 drops.

________________________________

To: livercirrhosissupport

Sent: Monday, March 5, 2012 9:11:39 AM

Subject: Re: RE: Difficult Question

 

Curious...how does sugar help create inflammation. We haven't been told to

reduce his sugar intake. He eats a bucket of sugar with his tea!

> & gt; & gt;

> & gt; & gt; Beautiful, Dianne. Sniff sniff.

> & gt; & gt; .

> & gt; & gt;

> & gt; & gt; Re: RE: Difficult Question

> & gt; & gt;

> & gt; & gt; Dianne

> & gt; & gt;

> & gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

> love for always!

> & gt; & gt;

> & gt; & gt;

> & gt; & gt;

> & gt; & gt; ________________________________

> & gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

> you are going

> & gt; & gt;

> & gt; & gt; through right now. I understand your pain and confusion. It

> is such a difficult road when we love someone and we watch them

> slipping away from us bit by bit daily.

> & gt; & gt;

> & gt; & gt; To answer your question, no this is not the time you sit by

> and watch him wither up and die. It is the time you pool your

> resources and reach out for help so you can help him cross over with

> dignity and pain free and as comfortable as is humanly possible.

> Hospice is an excellent choice for someone in your shoes. I don't say

> that flippantly or with little regard.

> & gt; & gt; I have walked your path to some degree. My husband of over 33

> years went home on Jan. 26, 2009. He had NASH cirrhosis.

> & gt; & gt;

> & gt; & gt; As for signs the end is near, it's a difficult thing to put

> your finger on. You spoke of him asking for pain meds, which was

> highly out of character for him. The same happened with my husband.

> He never wanted anything for pain until the last 2 weeks of his life.

> He went in for a paracentesis and asked the doctor for something for

> pain. He was prescribed Fentenyl transdermal patches. He had roundly

> refused anything whatsoever for pain up until that point.

> & gt; & gt;

> & gt; & gt; The needle stick for his paracentesis never stopped leaking.

> I had to change the bandage on it several times daily right up until

> his last breath. He became more and more confused, slept almost 24/7,

> could no longer eat or even sip water. He could not take his meds

> because he could not swallow them. His balance was really bad and he

> could barely stand up from his chair without assistance. He had no

> bowel or bladder control but that became a sort of non-issue because

> both his bowel and bladder just stopped working.

> & gt; & gt;

> & gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

> consultation. He was admitted to Hospice before we left the hospital.

> Two days after, the Hospice people came to our house and talked to me

> about what to expect. They tried to talk to my husband but he slept so

> much, he couldn't form a sentence. They explained to me that he was

> reacting in a very normal way for what he was going through.

> & gt; & gt;

> & gt; & gt; The next day I received what they called a 'comfort kit' from

> FedEx. It contained meds that might become necessary in order to keep

> him comfortable until his crossing was complete. Everything was in

> either a dropper or a suppository form. The fluid filled his abdominal

> cavity so quickly that he began to balloon up within 24 hours. There

> was nothing else to be done for him. He had no desire for a transplant

> and wanted to die quietly at home.

> & gt; & gt;

> & gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

> days, perhaps even only a few hours, until the time comes for the final

> crossing. I opened his after we had been home for about 9 days. I

> called his Hospice nurse who came as soon as she could get there to

> help me understand everything in the kit.

> & gt; & gt;

> & gt; & gt; He had refused to have a hospital bed, but was now incapable

> of making his own decisions so I had them order a hospital bed. It was

> delivered that afternoon. EMS staff arrived very early the next

> morning and moved him from his chair into the bed. The Hospice nursing

> assistant arrived soon afterwards and spent most of that day with us.

> She bathed him and changed his bed linens even though he had just

> gotten in bed. She wanted everything to be fresh so he could be

> comfortable.

> & gt; & gt;

> & gt; & gt; I had already started using the meds from his kit. He had

> morphine for pain (if one is allergic to morphine, the doctor will

> order other pain meds), haldol for restlessness, some sort of drops to

> dry up the secretions in his mouth so he wouldn't choke on them and one

> other that I can not remember at the moment.

> & gt; & gt;

> & gt; & gt; When he was awake, however briefly, he still knew everyone who

> came to visit up until Saturday morning. We had met when I was 15 and

> had dated until I finished high school and got married that summer. He

> had always signed anything he ever wrote to me " I love you, forever and

> always.....Terry " .

> & gt; & gt;

> & gt; & gt; On Saturday afternoon, he stopped calling my name and would

> just moan when he needed me. I had moved the sofa into his room so I

> could be there with him 24/7. He would call out " Di " when he wanted me

> at his bedside. He kept trying to say something, but could not.

> Finally, he moaned very deeply and I rushed to his bedside. I took his

> hand and he opened his eyes. He had a tear rolling down his cheek. He

> looked into my eyes, squeezed my hand and whispered 'forever and

> always'. I began to cry as I leaned over him to kiss him and said " I

> know baby, you love me forever and always and I love you too, forever

> and always. " He never made a sound or opened his eyes after that.

> & gt; & gt;

> & gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

> 2009. I and my sisters were at his bedside and his Mom was asleep on

> the sofa. Forever and always.........that's exactly where our love

> lives now, in eternity.

> & gt; & gt;

> & gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

> almost 24/7, cannot swallow, no appetite or thirst, inability to walk

> without assistance, loss of bowel and bladder control with soon coming

> shut down of both, confusion that worsens with every hour and for my

> husband at least, huge fluid retention with a leak that grew daily.

> & gt; & gt;

> & gt; & gt; There are some things that happened with my husband after he

> crossed that are hard to hear. However, if you would like to know

> about it, please email me privately at diane.chandler.75@ . Many

> would most likely not want to read about it on the board because it can

> be quite gruesome.

> & gt; & gt;

> & gt; & gt; Please know my heart and my prayers are with you. Please

> reach out to Hospice for help. You need it if you are to navigate this

> difficult time with any hope of having peace afterwards. This is hard

> work, the kind that will drain life from you and it does from him. I

> wish I had involved Hospice much earlier and did so with my Daddy who

> crossed last September and had been in Hospice for 10 months. He had

> C.O.P.D.

> & gt; & gt;

> & gt; & gt; Email me if you would like to ask questions about the things I

> spoke of earlier. Please take care of yourself. His journey is

> drawing to a close; you still have many days, weeks, months, years to

> go in your own. You will need your strength for the remainder of your

> own journey.

> & gt; & gt;

> & gt; & gt; Many hugs...........

> & gt; & gt;

> & gt; & gt; Diane C from TN

> & gt; & gt;

> & gt; & gt;

[Guest guest]

I'd forgotten about the Stevia; but then, I've never liked sugar in my tea or

coffee.

________________________________

 

All I know is that sugar creates an acidic environment and that goes along with

inflammation and cancer also loves the acidic state our bodies are in.  It is

hard to stay away from sugar as it is in everything but I use either honey which

is better or Stevia which is a natural sugar.  You also use less of the Stevia

because it is very sweet.  You can get it in packets, powder for which is very

potent and for 1 cup of regular sugar you only need 1/4 tsp of the powder.  You

can also get it in a liquid.  For a mug of tea or hot lemon I use 5 drops.

________________________________

To: livercirrhosissupport

Sent: Monday, March 5, 2012 9:11:39 AM

Subject: Re: RE: Difficult Question

 

Curious...how does sugar help create inflammation. We haven't been told to

reduce his sugar intake. He eats a bucket of sugar with his tea!

> & gt; & gt;

> & gt; & gt; Beautiful, Dianne. Sniff sniff.

> & gt; & gt; .

> & gt; & gt;

> & gt; & gt; Re: RE: Difficult Question

> & gt; & gt;

> & gt; & gt; Dianne

> & gt; & gt;

> & gt; & gt; Ya, I'm crying!!  But, what an absolutely beautiful story of

> love for always!

> & gt; & gt;

> & gt; & gt;

> & gt; & gt;

> & gt; & gt; ________________________________

> & gt; & gt; Hi Kim. First of all let me say that I am so sorry for all

> you are going

> & gt; & gt;

> & gt; & gt; through right now. I understand your pain and confusion. It

> is such a difficult road when we love someone and we watch them

> slipping away from us bit by bit daily.

> & gt; & gt;

> & gt; & gt; To answer your question, no this is not the time you sit by

> and watch him wither up and die. It is the time you pool your

> resources and reach out for help so you can help him cross over with

> dignity and pain free and as comfortable as is humanly possible.

> Hospice is an excellent choice for someone in your shoes. I don't say

> that flippantly or with little regard.

> & gt; & gt; I have walked your path to some degree. My husband of over 33

> years went home on Jan. 26, 2009. He had NASH cirrhosis.

> & gt; & gt;

> & gt; & gt; As for signs the end is near, it's a difficult thing to put

> your finger on. You spoke of him asking for pain meds, which was

> highly out of character for him. The same happened with my husband.

> He never wanted anything for pain until the last 2 weeks of his life.

> He went in for a paracentesis and asked the doctor for something for

> pain. He was prescribed Fentenyl transdermal patches. He had roundly

> refused anything whatsoever for pain up until that point.

> & gt; & gt;

> & gt; & gt; The needle stick for his paracentesis never stopped leaking.

> I had to change the bandage on it several times daily right up until

> his last breath. He became more and more confused, slept almost 24/7,

> could no longer eat or even sip water. He could not take his meds

> because he could not swallow them. His balance was really bad and he

> could barely stand up from his chair without assistance. He had no

> bowel or bladder control but that became a sort of non-issue because

> both his bowel and bladder just stopped working.

> & gt; & gt;

> & gt; & gt; At the hospital for the paracentesis, I asked for the Hospice

> consultation. He was admitted to Hospice before we left the hospital.

> Two days after, the Hospice people came to our house and talked to me

> about what to expect. They tried to talk to my husband but he slept so

> much, he couldn't form a sentence. They explained to me that he was

> reacting in a very normal way for what he was going through.

> & gt; & gt;

> & gt; & gt; The next day I received what they called a 'comfort kit' from

> FedEx. It contained meds that might become necessary in order to keep

> him comfortable until his crossing was complete. Everything was in

> either a dropper or a suppository form. The fluid filled his abdominal

> cavity so quickly that he began to balloon up within 24 hours. There

> was nothing else to be done for him. He had no desire for a transplant

> and wanted to die quietly at home.

> & gt; & gt;

> & gt; & gt; Once the 'comfort kit' is opened, it is typically only a few

> days, perhaps even only a few hours, until the time comes for the final

> crossing. I opened his after we had been home for about 9 days. I

> called his Hospice nurse who came as soon as she could get there to

> help me understand everything in the kit.

> & gt; & gt;

> & gt; & gt; He had refused to have a hospital bed, but was now incapable

> of making his own decisions so I had them order a hospital bed. It was

> delivered that afternoon. EMS staff arrived very early the next

> morning and moved him from his chair into the bed. The Hospice nursing

> assistant arrived soon afterwards and spent most of that day with us.

> She bathed him and changed his bed linens even though he had just

> gotten in bed. She wanted everything to be fresh so he could be

> comfortable.

> & gt; & gt;

> & gt; & gt; I had already started using the meds from his kit. He had

> morphine for pain (if one is allergic to morphine, the doctor will

> order other pain meds), haldol for restlessness, some sort of drops to

> dry up the secretions in his mouth so he wouldn't choke on them and one

> other that I can not remember at the moment.

> & gt; & gt;

> & gt; & gt; When he was awake, however briefly, he still knew everyone who

> came to visit up until Saturday morning. We had met when I was 15 and

> had dated until I finished high school and got married that summer. He

> had always signed anything he ever wrote to me " I love you, forever and

> always.....Terry " .

> & gt; & gt;

> & gt; & gt; On Saturday afternoon, he stopped calling my name and would

> just moan when he needed me. I had moved the sofa into his room so I

> could be there with him 24/7. He would call out " Di " when he wanted me

> at his bedside. He kept trying to say something, but could not.

> Finally, he moaned very deeply and I rushed to his bedside. I took his

> hand and he opened his eyes. He had a tear rolling down his cheek. He

> looked into my eyes, squeezed my hand and whispered 'forever and

> always'. I began to cry as I leaned over him to kiss him and said " I

> know baby, you love me forever and always and I love you too, forever

> and always. " He never made a sound or opened his eyes after that.

> & gt; & gt;

> & gt; & gt; He made his final crossing at 1:33 a.m. on Monday, Jan. 26,

> 2009. I and my sisters were at his bedside and his Mom was asleep on

> the sofa. Forever and always.........that's exactly where our love

> lives now, in eternity.

> & gt; & gt;

> & gt; & gt; Ok, so signs to look for.......extreme fatigue, sleeping

> almost 24/7, cannot swallow, no appetite or thirst, inability to walk

> without assistance, loss of bowel and bladder control with soon coming

> shut down of both, confusion that worsens with every hour and for my

> husband at least, huge fluid retention with a leak that grew daily.

> & gt; & gt;

> & gt; & gt; There are some things that happened with my husband after he

> crossed that are hard to hear. However, if you would like to know

> about it, please email me privately at diane.chandler.75@ . Many

> would most likely not want to read about it on the board because it can

> be quite gruesome.

> & gt; & gt;

> & gt; & gt; Please know my heart and my prayers are with you. Please

> reach out to Hospice for help. You need it if you are to navigate this

> difficult time with any hope of having peace afterwards. This is hard

> work, the kind that will drain life from you and it does from him. I

> wish I had involved Hospice much earlier and did so with my Daddy who

> crossed last September and had been in Hospice for 10 months. He had

> C.O.P.D.

> & gt; & gt;

> & gt; & gt; Email me if you would like to ask questions about the things I

> spoke of earlier. Please take care of yourself. His journey is

> drawing to a close; you still have many days, weeks, months, years to

> go in your own. You will need your strength for the remainder of your

> own journey.

> & gt; & gt;

> & gt; & gt; Many hugs...........

> & gt; & gt;

> & gt; & gt; Diane C from TN

> & gt; & gt;

> & gt; & gt;