Re: thank you for your warm wishes

[Guest guest]

Diane and Barby,

I feel for both of you, and I don't know how it is to be the

caregiver. I only know how it is to be the patient, and I think

being the patient is easier than being the caregiver from reading all

of the posts from caregivers, and knowing how hard it was for my

husband when I was so ill and needed a transplant. I was cheering

him up a lot of the time.

As for the Alpha 1-antitrypsin deficiency, I am a carrier of Alpha 1-

antitrypsin, but didn't have anything to do with my cirrhosis. It

was the Hep C. Shirley, another lady in my area who also is on this

list and had a liver transplant 20 days after I did at the same

hospital, has the Alpha 1-antitrypsin deficiency, and the doctors

told her it was gone with her old liver. She also has auto immune

hepatitis. You can see her post by typing shirley in the search box,

and the post she posted on June 23, 2008. She hasn't posted in a

while, but she wouldn't mind me telling you that she is doing well,

and just recently started doing labs every two weeks, and the doctors

allowed her to travel, so she is gone to visit her mother for two

weeks.

Anyway, I just wanted to say this little bit in response to your

posts.

Take care.

Penny

> >

> > thank you all for welcoming us to your group! diana from tn.,

your

> > husband has end stage as well you said, how long has he had it?

> what

> > were his symptoms, i know i should wait to go to vandy and let

the

> drs.

> > tell us what to expect but i am very impatient, i pray they are

> wrong

> > even though we have the diagnosis in black and white ,i want them

> to be

> > wrong, how does this progress what is gonna happen to him, how

can

> i

> > help him, will a new liver help him what if they cant treat the

hep

> > c ,will they give him a new liver, can i give him a piece of mine

> even

> > if they wont give him one can i insist??? omgoodness so many

> questions

> > mine mind in realling day and night,went to eat last nite couldnt

> eat i

> > feel sick, i cant picture my life with out this man i have loved

> for so

> > long ,we have been together for 23 years hes the love of my life

> and i

> > am selfish I NEED HIM TO BE OK ,how is your husband doing ,i

pray

> he

> > is well, i pray all of us are well phsyically and mentally, ok

> sorry i

> > am rambling , but any info i can get does seem to help me get my

> mind

> > under control, its the fear of the unknown that gets to me.

thanks

> > again much love barby and bobby

> >

>

[Guest guest]

Diane,

Precious!! Just precious! Thanks for sharing.

Praying the Lord continues to carry you through!

Pamela

Re: thank you for your warm wishes

Hi Barby,

My husband was diagnosed with cirrhosis in July, 2006 and was told he

had entered the last stage in October, 2007. We were also told he

had maybe 6 months to live. That was 10 months ago! Thank the Lord,

he is still with me!

When he was first diagnosed, he really didn't have symptoms other

than he just felt tired a lot, more so than would seem normal. He

went for a regular checkup with our PC and some of his labs were a

bit abnormal. So, the PC sent him to see a GI doc. The GI repeated

some labs and did a physical exam.

When the labs came back, he questioned whether or not my husband

might have cirrhosis, but didn't really think so because my husband

had no history that would indicate cirrhosis, no drinking or hep

infections, etc. However, he decided that he should do an endoscopy

to check for esophageal varices (basically varicose veins of in the

esophagus). He told us that, if varices were present,he would then

proceed with a biopsy.

My husband had the endoscopy and, sure enough, the doc found several

variceal swellings in the esophageal lining. Two weeks later, my

husband had the biopsy and the diagnosis was confirmed, he had

cirrhosis. The doc then proceeded with further lab work to check for

certain genetic markers since my husband history did not indicate

cirrhosis.

His Alpha-1 Antitripsen test revealed that he had inheirited a

defective gene combination from his parents. This did not cause his

cirrhosis, but made him suseptible to liver damage. This in

conjunction with the fact that he is a diabetic and has had elevated

lipids over the years has been determined to be the cause of his

cirrhosis. Also, he had some injury to his liver in an auto accident

in April, 2000.

Because of the Alpha-1 Antitripsen deficiency, he has opted not to

try to get a transplant because it would only serve to damage that

liver as well. Also, he will still have the diabetes. He believes

it would not be fair to those who need the livers, and who don't have

the pre-existing conditions to damage new livers, for him to take

one.

He believes that his time has come and that it is time to accept

that. He has never been upset about his diagnosis or prognosis. He

has always been at peace about the whole thing. Of course, he

doesn't want to leave me, but he knows that time must come for us

all.

Like you and Bobby, we have been together for many years. We have

been married for over 33 years and dated for 2 years before that.

So, all together, we've been together for over 35 years. We don't

have living children, but lost three in miscarriage during a 10 year

battle with infertility.

I have been with him since I was 15 and, like you, can't imagine how

I'm supposed to go on without him. There are days when I think I

simply cannot do it. I want to cry and scream and tell the whole

world how unfair all this is. Then, at other times, I want to cover

my head and stay in bed till it all goes away.

However, something happened just this week that reminded me that I

need to be making the most of every day. A friend who was married

one month before we were lost her husband this week. He died of a

stroke and a brain anuerysm (sp?). One minute he was there and

within 5 minutes, he was gone. No warning, no time to prepare, just

gone.

When I heard the news, I thought how blessed I am to have these

months to prepare for Terry's leaving. To have time to make those

last memories together, to say everything we need to say to each

other, to say our goodbyes. Yes, we have struggles, and there are

days when he's not awake long enough to do anything except eat and go

to the bathroom. But there are also days when he's pretty good and

we talk and even fuss a little and just be " normal " . Over the past

10 months, we've relived our 35+ years together and it was even

better the second time around!

So, I choose to see this as an opportunity. Terry and I are both

Christians and we know this life is only a preparation for the life

to come. We're both sure that we will see each other in heaven and

that death is not the end, but the beginning. We are so blessed in

that we were brought together here so we could enjoy there even more

because our love will not die, it will live on in eternity.

What can you do for him? Stand beside him, support his decisions, no

matter what they are and no matter how much it hurts. As far as I am

aware, Hep C does not disqualify him for a transplant. Prepare him a

diet of low protein, very low sodium. Encourage him to have optimism

about the future. Attitude has more to do with how well we do in any

illness than all the medicines in the world.

And, love him. Love him for all your worth, but don't treat him like

an invalid or look at him with pity in your eyes. Let him grieve his

loss, even if he does go ahead with a transplant, grieving has to

occur for the loss of his life as he once knew it. The most

important things you can do for him, you're already doing. You love

him, you're trying to be informed about his disease and you're

reaching out for help to deal. All of those things will help you

help him.

Please know that I understand what you're facing, I emphathize with

the things you are feeling right now. You and Bobby are in my

prayers. I'm always here if you need me. May God grant you strength

and peace.

Love and hugs....

Diane C. from TN

>

> thank you all for welcoming us to your group! diana from tn., your

> husband has end stage as well you said, how long has he had it?

what

> were his symptoms, i know i should wait to go to vandy and let the

drs.

> tell us what to expect but i am very impatient, i pray they are

wrong

> even though we have the diagnosis in black and white ,i want them

to be

> wrong, how does this progress what is gonna happen to him, how can

i

> help him, will a new liver help him what if they cant treat the hep

> c ,will they give him a new liver, can i give him a piece of mine

even

> if they wont give him one can i insist??? omgoodness so many

questions

> mine mind in realling day and night,went to eat last nite couldnt

eat i

> feel sick, i cant picture my life with out this man i have loved

for so

> long ,we have been together for 23 years hes the love of my life

and i

> am selfish I NEED HIM TO BE OK ,how is your husband doing ,i pray

he

> is well, i pray all of us are well phsyically and mentally, ok

sorry i

> am rambling , but any info i can get does seem to help me get my

mind

> under control, its the fear of the unknown that gets to me. thanks

> again much love barby and bobby

>

[Guest guest]

Hi Penny,

I appreciate so much your interest in Terry's well-being and the

encouragement regarding the transplant. A lot of things went into

his decision about the transplant, things other than just the

condition of his liver or other health conditions.

In April, 2000 he was in an auto accident which left him with a bi-

lateral acetabular fracture, a mild closed-head brain injury, an

injury to his spleen, a liver laceration and a severe hematoma to his

right kidney.

He was hospitalized for 5 months after they did an operative repair

of the left acetabulum. However, the right side was so badly

destroyed that it was unrepairable. They put his right leg in

traction and he was flat of his back for 4 of the 5 months in the

hospital.

After the right side had healed to the extent that it could, his leg

was taken from traction and they started the process of trying to get

him back on his feet again. We were told he most likely would never

walk again. After four excruciating weeks of therapy, he was up and

on his feet with the assistance of a walker and well enough to come

home.

He continued out-patient PT for nine more months until the insurance

refused further treatment because no further improvements were being

seen. They have had him on so many heavy duty pain meds over the

last few years that he has become immune to many of them. His pain is

almost unbearable on most days, but he never complains.

Then, in February, 2006, he got very sick with some sort of

infection, a very rare strep bacteria that we never knew where he got

or how he contracted it. I carried him into the ER on a Tuesday

afternoon in our car. He walked into the ER triage area of his own

accord. When they triaged him, his B/P was 52/28. They began to

urgently get lines into him and started pumping him full of so many

different things I can't even remember what half of them were.

Within an hour, a very warm and loving Dr. Evanna Proctor called me

aside to tell me he was critical, that his chances of surviving the

night were nearly ~0~ and that, if he did survive the night, he would

be on a ventilator. After two weeks of struggles and sleepless

nights, he began to turn around and was released a week later. His

Critical Care Specialist told us he had practiced CC medicine for

over 35 years and had never seen anyone as dead as Terry was without

actually dying.

He also told us every organ in his body had been damaged by his

extremely low blood pressures and the bacteria. He could never

expect for his life to be the same again. He was released on March

4, 2006 and was diagnosed with cirrhosis in July of that same year.

In October, 2007 we were told he was end stage and had maybe 6 months

to live and that, if he wanted to pursue a transplant, this was the

time to do so.

After many tests and consulations with different doctors, Terry

decided that his life had changed so much due to the pain and the

changes brought on first by the accident and then by the infection,

that he wasn't really living anymore, just existing and that he was

tired of existing here when he could be living in eternal rest and

peace with our Lord.

I have watched him for the past 8 years and I have seen him slowly

change from a vibrant, funny, self-confident, independant, out-going,

gregarious and happy man to one writhed with pain that racks his body

daily. He no longer can walk for more than a few feet without

stumbling and nearly falling. He can't toilet himself or take a bath

independantly. He can no longer go hunting or enjoy the outdoors

because of his injuries. His kidneys, heart and brain function will

never return to normal no matter how good a liver he gets.

He's tired and I love him too much to question a decision that I know

he anguished over. There comes a time when life and happiness does

not necessarily equal living in this present body, but in moving on

to inhabit the immortal body that will forever be painfree and

without the ravages of human existence. The Lord has been so good to

us and has extended Terry's life on at least two extreme occasions

and in a miraculous manner.

Therefore, Terry has decided to leave this all with Him. When He

decides this body has had enough and it's time to put on the immortal

body, then Terry will move on and I will go to meet him at the

appointed time. I will miss him in ways I haven't even imagined yet,

but I will always know with calm assurance that I will see him again

and when I do, he will no longer be in pain and suffering, but will

be peaceful and happy beyond anything I can comprehend with my mortal

mind.

So, we are at peace with his decision. It is not the right decision

for everyone; but for Terry, it is the only right decision. It was

an agonizing decision, but once he made it, he has never looked back

or regretted it.

I love you so much for being concerned and for caring. Please know

that I have not been offended in any way, but only thankful that you

could care so much for a stranger. You are an exceptional lady with

a precious heart. God bless you always!

Love and hugs.........

Diane C. from TN

>

> Hi Diane,

>

> I don't want to offend you or anything...........

[Guest guest]

Hi Barby,

I think we can all identify with what you're feeling right now.

Whether we're the patient, the caregiver or just a loved one, we know

that feeling of being out of control. When we were in the " waiting "

stage, I was so angry that all these doctors seemed to understand how

horrid this disease was, but they couldn't get us in for an

appointment for a couple of weeks or more! How could they?! Why

would they give you this awful news and then make you wait weeks to

see the appropriate professional? What kind of monsters were they

anyway?! So, you see, I do know and I do understand! Just hang in

there and know that we're here and our ears and hearts are always

open.

Love and hugs.........

Diane C. from TN

>

> diane thank you, thank you to everyone, i am soooo glad i am not

alone,

> and will be very glad to get to vandy and see what our options are,

as

> your hubby ,mine thinks its all gods will, i on the other hand am

more

> selfish right now ,its been a hard day of waiting for the phone to

ring

> and give us our appointment date ,it never came they say hopefully

> tommorrow.i feel so angry and i dont know who to be mad at, theres

no

> one to blame.i want to scream ,crying hurts my head lol, jeez this

is

> awful!!!! i have given this to god 40 times today because its so

much

> bigger than i, then i seem to try and take it back ,i am so out of

> control in my mind i cant stand it, so i am just trying to be still

and

> know HE is GOD and this is out of my control,but its not easy as

you

> all know, i do thank this wonder place with these wonderful people

who

> understand and care, even though you all dont even know us. god

bless

> barby

>

[Guest guest]

Diane, it hurts me to know that your DH is suffering so much. I can somewhat

relate. In 2002, the Tuesday before thanks giving, Sharon, my wife of nearly 20

years got a really bad headache. She had been having what we thought were

migraines for years, but this one was different because it never subsided. In

fact to this day, she has had the same headache, with very few moments of

relief. In the beginning, we made a pact to take her to Oregon, where assisted

suicide is legal. Good thing we found her a good pain specialist , as the pure

opioids are effective at dulling her headfache without many side effects. She

has Chiari malformation, and basilar invagination, and a handful of other things

wrong with the base of her skull. She has undergone 3 surgeries in the last

three years, and still has the headache, but is now losing her voice, because

her recurrent laryngeal nerve is compressed.

http://www.youtube.com/watch?v=6xZXEjliyYY

http://www.youtube.com/watch?v=AK-VJDlGyto & feature=related

http://www.youtube.com/watch?v=KELl6FevEbo & feature=related

She is so young, but the underlying disease she has which caused all of this ,

Ehlers Danlose syndrome, is killing her. It is a defect in the production of

collagen. It is so ironic that she has hypermobile joints, so she is very loose,

and her skin therefore looks much younger than it is, but she is falling apart,

her head is settling onto her spine and compressing her brain stem. I have

definately come to believe that there are worse things than death. Suffering to

me is worse.

I cant remember if I already told you all of this. Forgive me if I have. I just

wanted you to know, because knowing Terrys situation make me feel not so alone.

I dont live in your shoes, but I have a pair kinda like them. You are my dear

friend now.

My prayers are with you and Terry. God bless you/ Love, Bobby

Re: thank you for your warm wishes

Hi Penny,

I appreciate so much your interest in Terry's well-being and the

encouragement regarding the transplant. A lot of things went into

his decision about the transplant, things other than just the

condition of his liver or other health conditions.

In April, 2000 he was in an auto accident which left him with a bi-

lateral acetabular fracture, a mild closed-head brain injury, an

injury to his spleen, a liver laceration and a severe hematoma to his

right kidney.

He was hospitalized for 5 months after they did an operative repair

of the left acetabulum. However, the right side was so badly

destroyed that it was unrepairable. They put his right leg in

traction and he was flat of his back for 4 of the 5 months in the

hospital.

After the right side had healed to the extent that it could, his leg

was taken from traction and they started the process of trying to get

him back on his feet again. We were told he most likely would never

walk again. After four excruciating weeks of therapy, he was up and

on his feet with the assistance of a walker and well enough to come

home.

He continued out-patient PT for nine more months until the insurance

refused further treatment because no further improvements were being

seen. They have had him on so many heavy duty pain meds over the

last few years that he has become immune to many of them. His pain is

almost unbearable on most days, but he never complains.

Then, in February, 2006, he got very sick with some sort of

infection, a very rare strep bacteria that we never knew where he got

or how he contracted it. I carried him into the ER on a Tuesday

afternoon in our car. He walked into the ER triage area of his own

accord. When they triaged him, his B/P was 52/28. They began to

urgently get lines into him and started pumping him full of so many

different things I can't even remember what half of them were.

Within an hour, a very warm and loving Dr. Evanna Proctor called me

aside to tell me he was critical, that his chances of surviving the

night were nearly ~0~ and that, if he did survive the night, he would

be on a ventilator. After two weeks of struggles and sleepless

nights, he began to turn around and was released a week later. His

Critical Care Specialist told us he had practiced CC medicine for

over 35 years and had never seen anyone as dead as Terry was without

actually dying.

He also told us every organ in his body had been damaged by his

extremely low blood pressures and the bacteria. He could never

expect for his life to be the same again. He was released on March

4, 2006 and was diagnosed with cirrhosis in July of that same year.

In October, 2007 we were told he was end stage and had maybe 6 months

to live and that, if he wanted to pursue a transplant, this was the

time to do so.

After many tests and consulations with different doctors, Terry

decided that his life had changed so much due to the pain and the

changes brought on first by the accident and then by the infection,

that he wasn't really living anymore, just existing and that he was

tired of existing here when he could be living in eternal rest and

peace with our Lord.

I have watched him for the past 8 years and I have seen him slowly

change from a vibrant, funny, self-confident, independant, out-going,

gregarious and happy man to one writhed with pain that racks his body

daily. He no longer can walk for more than a few feet without

stumbling and nearly falling. He can't toilet himself or take a bath

independantly. He can no longer go hunting or enjoy the outdoors

because of his injuries. His kidneys, heart and brain function will

never return to normal no matter how good a liver he gets.

He's tired and I love him too much to question a decision that I know

he anguished over. There comes a time when life and happiness does

not necessarily equal living in this present body, but in moving on

to inhabit the immortal body that will forever be painfree and

without the ravages of human existence. The Lord has been so good to

us and has extended Terry's life on at least two extreme occasions

and in a miraculous manner.

Therefore, Terry has decided to leave this all with Him. When He

decides this body has had enough and it's time to put on the immortal

body, then Terry will move on and I will go to meet him at the

appointed time. I will miss him in ways I haven't even imagined yet,

but I will always know with calm assurance that I will see him again

and when I do, he will no longer be in pain and suffering, but will

be peaceful and happy beyond anything I can comprehend with my mortal

mind.

So, we are at peace with his decision. It is not the right decision

for everyone; but for Terry, it is the only right decision. It was

an agonizing decision, but once he made it, he has never looked back

or regretted it.

I love you so much for being concerned and for caring. Please know

that I have not been offended in any way, but only thankful that you

could care so much for a stranger. You are an exceptional lady with

a precious heart. God bless you always!

Love and hugs........ .

Diane C. from TN

>

> Hi Diane,

>

> I don't want to offend you or anything.... .......

[Guest guest]

Diane, it hurts me to know that your DH is suffering so much. I can

somewhat relate. In 2002, the Tuesday before thanks giving, Sharon, my

wife of nearly 20 years got a really bad headache. She had been having

what we thought were migraines for years, but this one was different

because it never subsided. In fact to this day, she has had the same

headache, with very few moments of relief. In the beginning, we made a

pact to take her to Oregon, where assisted suicide is legal. Good thing

we found her a good pain specialist , as the pure opioids are effective

at dulling her headfache without many side effects. She has Chiari

malformation, and basilar invagination, and a handful of other things

wrong with the base of her skull. She has undergone 3 surgeries in the

last three years, and still has the headache, but is now losing her

voice, because her recurrent laryngeal nerve is compressed.

http://www.youtube.com/watch?v=6xZXEjliyYY

http://www.youtube.com/watch?v=AK-VJDlGyto & feature=related

http://www.youtube.com/watch?v=KELl6FevEbo & feature=related

She

is so young, but the underlying disease she has which caused all of

this , Ehlers Danlose syndrome, is killing her. It is a defect in the

production of collagen. It is so ironic that she has hypermobile

joints, so she is very loose, and her skin therefore looks much younger

than it is, but she is falling apart, her head is settling onto her

spine and compressing her brain stem. I have definately come to believe

that there are worse things than death. Suffering to me is worse.

I

cant remember if I already told you all of this. Forgive me if I have.

I just wanted you to know, because knowing Terrys situation make me

feel not so alone. I dont live in your shoes, but I have a pair kinda

like them. You are my dear friend now.

My prayers are with you and Terry. God bless you/ Love, Bobby

Re: thank you for your warm wishes

Hi Penny,

I appreciate so much your interest in Terry's well-being and the

encouragement regarding the transplant. A lot of things went into

his decision about the transplant, things other than just the

condition of his liver or other health conditions.

In April, 2000 he was in an auto accident which left him with a bi-

lateral acetabular fracture, a mild closed-head brain injury, an

injury to his spleen, a liver laceration and a severe hematoma to his

right kidney.

He was hospitalized for 5 months after they did an operative repair

of the left acetabulum. However, the right side was so badly

destroyed that it was unrepairable. They put his right leg in

traction and he was flat of his back for 4 of the 5 months in the

hospital.

After the right side had healed to the extent that it could, his leg

was taken from traction and they started the process of trying to get

him back on his feet again. We were told he most likely would never

walk again. After four excruciating weeks of therapy, he was up and

on his feet with the assistance of a walker and well enough to come

home.

He continued out-patient PT for nine more months until the insurance

refused further treatment because no further improvements were being

seen. They have had him on so many heavy duty pain meds over the

last few years that he has become immune to many of them. His pain is

almost unbearable on most days, but he never complains.

Then, in February, 2006, he got very sick with some sort of

infection, a very rare strep bacteria that we never knew where he got

or how he contracted it. I carried him into the ER on a Tuesday

afternoon in our car. He walked into the ER triage area of his own

accord. When they triaged him, his B/P was 52/28. They began to

urgently get lines into him and started pumping him full of so many

different things I can't even remember what half of them were.

Within an hour, a very warm and loving Dr. Evanna Proctor called me

aside to tell me he was critical, that his chances of surviving the

night were nearly ~0~ and that, if he did survive the night, he would

be on a ventilator. After two weeks of struggles and sleepless

nights, he began to turn around and was released a week later. His

Critical Care Specialist told us he had practiced CC medicine for

over 35 years and had never seen anyone as dead as Terry was without

actually dying.

He also told us every organ in his body had been damaged by his

extremely low blood pressures and the bacteria. He could never

expect for his life to be the same again. He was released on March

4, 2006 and was diagnosed with cirrhosis in July of that same year.

In October, 2007 we were told he was end stage and had maybe 6 months

to live and that, if he wanted to pursue a transplant, this was the

time to do so.

After many tests and consulations with different doctors, Terry

decided that his life had changed so much due to the pain and the

changes brought on first by the accident and then by the infection,

that he wasn't really living anymore, just existing and that he was

tired of existing here when he could be living in eternal rest and

peace with our Lord.

I have watched him for the past 8 years and I have seen him slowly

change from a vibrant, funny, self-confident, independant, out-going,

gregarious and happy man to one writhed with pain that racks his body

daily. He no longer can walk for more than a few feet without

stumbling and nearly falling. He can't toilet himself or take a bath

independantly. He can no longer go hunting or enjoy the outdoors

because of his injuries. His kidneys, heart and brain function will

never return to normal no matter how good a liver he gets.

He's tired and I love him too much to question a decision that I know

he anguished over. There comes a time when life and happiness does

not necessarily equal living in this present body, but in moving on

to inhabit the immortal body that will forever be painfree and

without the ravages of human existence. The Lord has been so good to

us and has extended Terry's life on at least two extreme occasions

and in a miraculous manner.

Therefore, Terry has decided to leave this all with Him. When He

decides this body has had enough and it's time to put on the immortal

body, then Terry will move on and I will go to meet him at the

appointed time. I will miss him in ways I haven't even imagined yet,

but I will always know with calm assurance that I will see him again

and when I do, he will no longer be in pain and suffering, but will

be peaceful and happy beyond anything I can comprehend with my mortal

mind.

So, we are at peace with his decision. It is not the right decision

for everyone; but for Terry, it is the only right decision. It was

an agonizing decision, but once he made it, he has never looked back

or regretted it.

I love you so much for being concerned and for caring. Please know

that I have not been offended in any way, but only thankful that you

could care so much for a stranger. You are an exceptional lady with

a precious heart. God bless you always!

Love and hugs........ .

Diane C. from TN

>

> Hi Diane,

>

> I don't want to offend you or anything.... .......

[Guest guest]

wow daine ,what strenghtn you have ,tears are streaming down my face

for you and terry, i know how hard these past few years must have

been on you, i am sorry for your pain and terrys, wow, i am in awe of

you both and feel alittle silly for so many tears over bobby and i

when we dont even realize how bad things could really be!! i admire

your stenghth and faith and i pray i will be able to have the

same ,if and when i need too. you are an inspiration to me i thank

you for bearing your sole, that had to be tough to accept ,my prayers

are with you both ,god bless

> >

> > Hi Diane,

> >

> > I don't want to offend you or anything...........

>

[Guest guest]

-thank you jan nice to meet you, sorry to hear about your

troubles ,its funny how you fall into this self pity thing why us ,we

are good people , then i meets folks like you all, and it is a

comfort, kind of, because its a double edged sword because i hate to

see any of us in pain!!! i have put up a small album of bobby and i

and our family ,take a peek and then you will know who your talking

to sort of lol. you will be in my prayers,and thanks for the advise,

i am gonna try to tackle my living room and bedroom closet today and

trust me its very scary in both of them lol, i seem to have never

thrown anything out from my kids childhoods and they dont seem to

want the stuff lol classic just classic ,have a blessed day my love--

In livercirrhosissupport , " Jan Holman "

wrote:

>

> Barby - we may not know what you look like, but we do know you. I

can

> remember doing the same thing you say you did today, putting

something in

> God's hands and then taking it back again. When I had my three

kids by

> myself after my divorce, I felt overwhelmed. I would pray and ask

God to

> help me, to show me what to do, to take over. Then something would

come up,

> and I was right there again, trying to fix something. One day I

was sitting

> in my garden, again overwhelmed and I heard/felt a voice say " I'll

be the

> Father, you only have to be the mother. " If it helps, tell

yourself you are

> the wife, and leave the rest up to God. You aren't the doctor, you

aren't

> the mother. I remember one day I had so much to do before leaving

home for

> a meeting that night. I had three kids to get ready to take along,

dinner

> to make ready for my husband when he came home from work and all

the other

> little things a housewife has to do every day. I looked at the

clock and

> saw I only had 45 minutes left to do anything. So, I told myself I

could

> only do 45 minutes of what I had left to do. I was amazed how much

I did

> get done in that 45 minutes. Fretting for the hour before hadn't

> accomplished much at all (: Now I am going to suggest something I

am not

> very good at myself: Find something you need to get done and get

started on

> it. If it is something complicated, it might take your mind off

all the

> things it is thinking of now.

>

> I got bad news myself on Thursday, my kidneys are going bad. I

feel as if I

> am handling it okay, but I am so tired, sleeping a lot more than

usual, have

> no energy. I know they couldn't have gotten worse just because I

found out

> they are, but that is how it feels to me. I am sure, that given a

couple of

> days, some energy will come back. don't expect it will be tomorrow

or the

> next day as I have an appt. with a spinal surgeon for an evaluation

of the

> lumbar region of my spin. Refuse to have more surgery, at least

for another

> few months, but hoping there is a shot that will help me.

>

> Hope you get that call soon. Jan H

>

> On Mon, Aug 18, 2008 at 5:13 PM, pinkmeetsblue

> wrote:

>

> > diane thank you, thank you to everyone, i am soooo glad i am

not alone,

> > and will be very glad to get to vandy and see what our options

are, as

> > your hubby ,mine thinks its all gods will, i on the other hand am

more

> > selfish right now ,its been a hard day of waiting for the phone

to ring

> > and give us our appointment date ,it never came they say hopefully

> > tommorrow.i feel so angry and i dont know who to be mad at,

theres no

> > one to blame.i want to scream ,crying hurts my head lol, jeez

this is

> > awful!!!! i have given this to god 40 times today because its so

much

> > bigger than i, then i seem to try and take it back ,i am so out of

> > control in my mind i cant stand it, so i am just trying to be

still and

> > know HE is GOD and this is out of my control,but its not easy as

you

> > all know, i do thank this wonder place with these wonderful

people who

> > understand and care, even though you all dont even know us. god

bless

> > barby

> >

> >

> >

>

>

>

> --

> Jan H

>

>

>

[Guest guest]

Hi Bobby,

I did know some of Sharon's story, but not the full extent. I

watched the videos. The love you and Sharon share is so obvious and

precious. Yes, we do walk in very similar shoes, don't we? Please

know that Terry and I are praying for you and Sharon. Today he

understands and was able to watch the videos with me. He says it

looks like the two of you are in love the way we are! I guess he

thinks no one else can love like that?! God bless!

Love and hugs........

Diane C. from TN

>

> Diane, it hurts me to know that your DH is suffering so much. I can

somewhat relate...........

[Guest guest]

Barby,

Thanks for the kind words. It's not me who is strong, it the

strength of the Lord. Without Him, I couldn't face my life from day

to day, but with His help I have been able to go on. I have my weak

moments, but that always comes when I take my eyes off Jesus and

forget that He bears my burdens for me, I don't have to. I know you

will find that same strength when you need it. Thanks for your

prayers, it the most precious gift we can give each other in our

circumstances. God bless you and Bobby!

Love and hugs...........

Diane C. from TN

>

> wow daine ,what strenghtn you have..............

[Guest guest]

Dear Jan, I am so sorry to hear about your kidneys. You have had a really rough

time. I think about you and will pray for comfort, and his will. I hope you get

some energy back, too. I so much appreciate your friendship in this group, you

are one of the people who woke it up last year, and got things in the track that

they are now on. The postings per month back then went from 20 a month to 400!

God bless you, Jan. Love, Bobby

Re: thank you for your warm wishes

Barby - we may not know what you look like, but we do know you. I can

remember doing the same thing you say you did today, putting something in

God's hands and then taking it back again. When I had my three kids by

myself after my divorce, I felt overwhelmed. I would pray and ask God to

help me, to show me what to do, to take over. Then something would come up,

and I was right there again, trying to fix something. One day I was sitting

in my garden, again overwhelmed and I heard/felt a voice say " I'll be the

Father, you only have to be the mother. " If it helps, tell yourself you are

the wife, and leave the rest up to God. You aren't the doctor, you aren't

the mother. I remember one day I had so much to do before leaving home for

a meeting that night. I had three kids to get ready to take along, dinner

to make ready for my husband when he came home from work and all the other

little things a housewife has to do every day. I looked at the clock and

saw I only had 45 minutes left to do anything. So, I told myself I could

only do 45 minutes of what I had left to do. I was amazed how much I did

get done in that 45 minutes. Fretting for the hour before hadn't

accomplished much at all (: Now I am going to suggest something I am not

very good at myself: Find something you need to get done and get started on

it. If it is something complicated, it might take your mind off all the

things it is thinking of now.

I got bad news myself on Thursday, my kidneys are going bad. I feel as if I

am handling it okay, but I am so tired, sleeping a lot more than usual, have

no energy. I know they couldn't have gotten worse just because I found out

they are, but that is how it feels to me. I am sure, that given a couple of

days, some energy will come back. don't expect it will be tomorrow or the

next day as I have an appt. with a spinal surgeon for an evaluation of the

lumbar region of my spin. Refuse to have more surgery, at least for another

few months, but hoping there is a shot that will help me.

Hope you get that call soon. Jan H

On Mon, Aug 18, 2008 at 5:13 PM, pinkmeetsblue

<itsabnbthing@ bellsouth. net>wrote:

> diane thank you, thank you to everyone, i am soooo glad i am not alone,

> and will be very glad to get to vandy and see what our options are, as

> your hubby ,mine thinks its all gods will, i on the other hand am more

> selfish right now ,its been a hard day of waiting for the phone to ring

> and give us our appointment date ,it never came they say hopefully

> tommorrow.i feel so angry and i dont know who to be mad at, theres no

> one to blame.i want to scream ,crying hurts my head lol, jeez this is

> awful!!!! i have given this to god 40 times today because its so much

> bigger than i, then i seem to try and take it back ,i am so out of

> control in my mind i cant stand it, so i am just trying to be still and

> know HE is GOD and this is out of my control,but its not easy as you

> all know, i do thank this wonder place with these wonderful people who

> understand and care, even though you all dont even know us. god bless

> barby

>

>

>

--

Jan H

[Guest guest]

Hi Diane,

I'm so sorry. I understand now. I feel for you and him. I just

cried when I read your response. It is the right decision for him.

I can see that now.

Take care of him and yourself and treasure your time together, which

I know you are doing.

Penny

> >

> > Hi Diane,

> >

> > I don't want to offend you or anything...........

>

[Guest guest]

Barby - you are ahead of me then with just a closet being scarey. My whole

house is. Nobody else here ever thinks of cleaning anything. I have to

bribe my grandson with computer time to get him to pick up his things. But

have to balance that with my need for time. I used to be here all day every

day I was home with short breaks, now I can use the computer today because I

just took him to work. But. I have an appt with a back surgeon later today,

have to leave in 2 hours as it is 1 1/2 hours away. I don't know how old

your children are, but I wouldn't throw away everything you have kept. My

children are all over 30 and now getting to the point where some of that

stuff matters to them.

Reading about everybody's pain does hurt. As a person with cirrhosis, it

also is an indication of what I might go through. I am not sure what stage

I am in since my doctors don't use that word stage. They use the word

scale, and I am a 4 out of 4 as to damage on my liver. But I have some of

the symptoms of ESLD, such as the start of kidney failure etc. It also

tells me what I could put my family through. When I think about it, I hope

that I die of a heart attack quickly before they have to go through all you

and the other caregivers on the group are going through. Yes, laughing does

help a lot and sometimes crying releases a lot of tension too. You might

find yourself doing some of both today as you go through that closet.

Excuse the rambling, but I do that in personal conversations too. Just me.

No excuse. Jan H

On Tue, Aug 19, 2008 at 6:38 AM, pinkmeetsblue

wrote:

> -thank you jan nice to meet you, sorry to hear about your

> troubles ,its funny how you fall into this self pity thing why us ,we

> are good people , then i meets folks like you all, and it is a

> comfort, kind of, because its a double edged sword because i hate to

> see any of us in pain!!! i have put up a small album of bobby and i

> and our family ,take a peek and then you will know who your talking

> to sort of lol. you will be in my prayers,and thanks for the advise,

> i am gonna try to tackle my living room and bedroom closet today and

> trust me its very scary in both of them lol, i seem to have never

> thrown anything out from my kids childhoods and they dont seem to

> want the stuff lol classic just classic ,have a blessed day my love--

> In

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>,

> " Jan Holman "

> wrote:

> >

> > Barby - we may not know what you look like, but we do know you. I

> can

> > remember doing the same thing you say you did today, putting

> something in

> > God's hands and then taking it back again. When I had my three

> kids by

> > myself after my divorce, I felt overwhelmed. I would pray and ask

> God to

> > help me, to show me what to do, to take over. Then something would

> come up,

> > and I was right there again, trying to fix something. One day I

> was sitting

> > in my garden, again overwhelmed and I heard/felt a voice say " I'll

> be the

> > Father, you only have to be the mother. " If it helps, tell

> yourself you are

> > the wife, and leave the rest up to God. You aren't the doctor, you

> aren't

> > the mother. I remember one day I had so much to do before leaving

> home for

> > a meeting that night. I had three kids to get ready to take along,

> dinner

> > to make ready for my husband when he came home from work and all

> the other

> > little things a housewife has to do every day. I looked at the

> clock and

> > saw I only had 45 minutes left to do anything. So, I told myself I

> could

> > only do 45 minutes of what I had left to do. I was amazed how much

> I did

> > get done in that 45 minutes. Fretting for the hour before hadn't

> > accomplished much at all (: Now I am going to suggest something I

> am not

> > very good at myself: Find something you need to get done and get

> started on

> > it. If it is something complicated, it might take your mind off

> all the

> > things it is thinking of now.

> >

> > I got bad news myself on Thursday, my kidneys are going bad. I

> feel as if I

> > am handling it okay, but I am so tired, sleeping a lot more than

> usual, have

> > no energy. I know they couldn't have gotten worse just because I

> found out

> > they are, but that is how it feels to me. I am sure, that given a

> couple of

> > days, some energy will come back. don't expect it will be tomorrow

> or the

> > next day as I have an appt. with a spinal surgeon for an evaluation

> of the

> > lumbar region of my spin. Refuse to have more surgery, at least

> for another

> > few months, but hoping there is a shot that will help me.

> >

> > Hope you get that call soon. Jan H

> >

> > On Mon, Aug 18, 2008 at 5:13 PM, pinkmeetsblue

> > wrote:

>

> >

> > > diane thank you, thank you to everyone, i am soooo glad i am

> not alone,

> > > and will be very glad to get to vandy and see what our options

> are, as

> > > your hubby ,mine thinks its all gods will, i on the other hand am

> more

> > > selfish right now ,its been a hard day of waiting for the phone

> to ring

> > > and give us our appointment date ,it never came they say hopefully

> > > tommorrow.i feel so angry and i dont know who to be mad at,

> theres no

> > > one to blame.i want to scream ,crying hurts my head lol, jeez

> this is

> > > awful!!!! i have given this to god 40 times today because its so

> much

> > > bigger than i, then i seem to try and take it back ,i am so out of

> > > control in my mind i cant stand it, so i am just trying to be

> still and

> > > know HE is GOD and this is out of my control,but its not easy as

> you

> > > all know, i do thank this wonder place with these wonderful

> people who

> > > understand and care, even though you all dont even know us. god

> bless

> > > barby

> > >

> > >

> > >

> >

> >

> >

> > --

> > Jan H

> >

> >

> >

[Guest guest]

Jan I wish I were closer, I'd drive you to your appointment and we could visit

along the way!

Big Hugs dear! Hope the back guy is able to give you some relief.

Pamela

Re: thank you for your warm wishes

Barby - you are ahead of me then with just a closet being scarey. My whole

house is. Nobody else here ever thinks of cleaning anything. I have to

bribe my grandson with computer time to get him to pick up his things. But

have to balance that with my need for time. I used to be here all day every

day I was home with short breaks, now I can use the computer today because I

just took him to work. But. I have an appt with a back surgeon later today,

have to leave in 2 hours as it is 1 1/2 hours away. I don't know how old

your children are, but I wouldn't throw away everything you have kept. My

children are all over 30 and now getting to the point where some of that

stuff matters to them.

Reading about everybody's pain does hurt. As a person with cirrhosis, it

also is an indication of what I might go through. I am not sure what stage

I am in since my doctors don't use that word stage. They use the word

scale, and I am a 4 out of 4 as to damage on my liver. But I have some of

the symptoms of ESLD, such as the start of kidney failure etc. It also

tells me what I could put my family through. When I think about it, I hope

that I die of a heart attack quickly before they have to go through all you

and the other caregivers on the group are going through. Yes, laughing does

help a lot and sometimes crying releases a lot of tension too. You might

find yourself doing some of both today as you go through that closet.

Excuse the rambling, but I do that in personal conversations too. Just me.

No excuse. Jan H

On Tue, Aug 19, 2008 at 6:38 AM, pinkmeetsblue

wrote:

> -thank you jan nice to meet you, sorry to hear about your

> troubles ,its funny how you fall into this self pity thing why us ,we

> are good people , then i meets folks like you all, and it is a

> comfort, kind of, because its a double edged sword because i hate to

> see any of us in pain!!! i have put up a small album of bobby and i

> and our family ,take a peek and then you will know who your talking

> to sort of lol. you will be in my prayers,and thanks for the advise,

> i am gonna try to tackle my living room and bedroom closet today and

> trust me its very scary in both of them lol, i seem to have never

> thrown anything out from my kids childhoods and they dont seem to

> want the stuff lol classic just classic ,have a blessed day my love--

> In

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>,

> " Jan Holman "

> wrote:

> >

> > Barby - we may not know what you look like, but we do know you. I

> can

> > remember doing the same thing you say you did today, putting

> something in

> > God's hands and then taking it back again. When I had my three

> kids by

> > myself after my divorce, I felt overwhelmed. I would pray and ask

> God to

> > help me, to show me what to do, to take over. Then something would

> come up,

> > and I was right there again, trying to fix something. One day I

> was sitting

> > in my garden, again overwhelmed and I heard/felt a voice say " I'll

> be the

> > Father, you only have to be the mother. " If it helps, tell

> yourself you are

> > the wife, and leave the rest up to God. You aren't the doctor, you

> aren't

> > the mother. I remember one day I had so much to do before leaving

> home for

> > a meeting that night. I had three kids to get ready to take along,

> dinner

> > to make ready for my husband when he came home from work and all

> the other

> > little things a housewife has to do every day. I looked at the

> clock and

> > saw I only had 45 minutes left to do anything. So, I told myself I

> could

> > only do 45 minutes of what I had left to do. I was amazed how much

> I did

> > get done in that 45 minutes. Fretting for the hour before hadn't

> > accomplished much at all (: Now I am going to suggest something I

> am not

> > very good at myself: Find something you need to get done and get

> started on

> > it. If it is something complicated, it might take your mind off

> all the

> > things it is thinking of now.

> >

> > I got bad news myself on Thursday, my kidneys are going bad. I

> feel as if I

> > am handling it okay, but I am so tired, sleeping a lot more than

> usual, have

> > no energy. I know they couldn't have gotten worse just because I

> found out

> > they are, but that is how it feels to me. I am sure, that given a

> couple of

> > days, some energy will come back. don't expect it will be tomorrow

> or the

> > next day as I have an appt. with a spinal surgeon for an evaluation

> of the

> > lumbar region of my spin. Refuse to have more surgery, at least

> for another

> > few months, but hoping there is a shot that will help me.

> >

> > Hope you get that call soon. Jan H

> >

> > On Mon, Aug 18, 2008 at 5:13 PM, pinkmeetsblue

> > wrote:

>

> >

> > > diane thank you, thank you to everyone, i am soooo glad i am

> not alone,

> > > and will be very glad to get to vandy and see what our options

> are, as

> > > your hubby ,mine thinks its all gods will, i on the other hand am

> more

> > > selfish right now ,its been a hard day of waiting for the phone

> to ring

> > > and give us our appointment date ,it never came they say hopefully

> > > tommorrow.i feel so angry and i dont know who to be mad at,

> theres no

> > > one to blame.i want to scream ,crying hurts my head lol, jeez

> this is

> > > awful!!!! i have given this to god 40 times today because its so

> much

> > > bigger than i, then i seem to try and take it back ,i am so out of

> > > control in my mind i cant stand it, so i am just trying to be

> still and

> > > know HE is GOD and this is out of my control,but its not easy as

> you

> > > all know, i do thank this wonder place with these wonderful

> people who

> > > understand and care, even though you all dont even know us. god

> bless

> > > barby

> > >

> > >

> > >

> >

> >

> >

> > --

> > Jan H

> >

> >

> >

[Guest guest]

Thanks Pamela, would love that, but, not too many people live close to me.

<S> Jan H

On Tue, Aug 19, 2008 at 11:54 AM, Pamela on wrote:

> Jan I wish I were closer, I'd drive you to your appointment and we could

> visit along the way!

>

> Big Hugs dear! Hope the back guy is able to give you some relief.

>

> Pamela

> Re: thank you for your warm wishes

>

> Barby - you are ahead of me then with just a closet being scarey. My

> whole

> house is. Nobody else here ever thinks of cleaning anything. I have to

> bribe my grandson with computer time to get him to pick up his things. But

> have to balance that with my need for time. I used to be here all day every

> day I was home with short breaks, now I can use the computer today because

> I

> just took him to work. But. I have an appt with a back surgeon later today,

> have to leave in 2 hours as it is 1 1/2 hours away. I don't know how old

> your children are, but I wouldn't throw away everything you have kept. My

> children are all over 30 and now getting to the point where some of that

> stuff matters to them.

>

> Reading about everybody's pain does hurt. As a person with cirrhosis, it

> also is an indication of what I might go through. I am not sure what stage

> I am in since my doctors don't use that word stage. They use the word

> scale, and I am a 4 out of 4 as to damage on my liver. But I have some of

> the symptoms of ESLD, such as the start of kidney failure etc. It also

> tells me what I could put my family through. When I think about it, I hope

> that I die of a heart attack quickly before they have to go through all you

> and the other caregivers on the group are going through. Yes, laughing does

> help a lot and sometimes crying releases a lot of tension too. You might

> find yourself doing some of both today as you go through that closet.

> Excuse the rambling, but I do that in personal conversations too. Just me.

> No excuse. Jan H

>

> On Tue, Aug 19, 2008 at 6:38 AM, pinkmeetsblue

> <itsabnbthing@... <itsabnbthing%40bellsouth.net>>wrote:

>

> > -thank you jan nice to meet you, sorry to hear about your

> > troubles ,its funny how you fall into this self pity thing why us ,we

> > are good people , then i meets folks like you all, and it is a

> > comfort, kind of, because its a double edged sword because i hate to

> > see any of us in pain!!! i have put up a small album of bobby and i

> > and our family ,take a peek and then you will know who your talking

> > to sort of lol. you will be in my prayers,and thanks for the advise,

> > i am gonna try to tackle my living room and bedroom closet today and

> > trust me its very scary in both of them lol, i seem to have never

> > thrown anything out from my kids childhoods and they dont seem to

> > want the stuff lol classic just classic ,have a blessed day my love--

> > In

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>

> <livercirrhosissupport%40yahoogroups.com>,

>

> > " Jan Holman "

> > wrote:

> > >

> > > Barby - we may not know what you look like, but we do know you. I

> > can

> > > remember doing the same thing you say you did today, putting

> > something in

> > > God's hands and then taking it back again. When I had my three

> > kids by

> > > myself after my divorce, I felt overwhelmed. I would pray and ask

> > God to

> > > help me, to show me what to do, to take over. Then something would

> > come up,

> > > and I was right there again, trying to fix something. One day I

> > was sitting

> > > in my garden, again overwhelmed and I heard/felt a voice say " I'll

> > be the

> > > Father, you only have to be the mother. " If it helps, tell

> > yourself you are

> > > the wife, and leave the rest up to God. You aren't the doctor, you

> > aren't

> > > the mother. I remember one day I had so much to do before leaving

> > home for

> > > a meeting that night. I had three kids to get ready to take along,

> > dinner

> > > to make ready for my husband when he came home from work and all

> > the other

> > > little things a housewife has to do every day. I looked at the

> > clock and

> > > saw I only had 45 minutes left to do anything. So, I told myself I

> > could

> > > only do 45 minutes of what I had left to do. I was amazed how much

> > I did

> > > get done in that 45 minutes. Fretting for the hour before hadn't

> > > accomplished much at all (: Now I am going to suggest something I

> > am not

> > > very good at myself: Find something you need to get done and get

> > started on

> > > it. If it is something complicated, it might take your mind off

> > all the

> > > things it is thinking of now.

> > >

> > > I got bad news myself on Thursday, my kidneys are going bad. I

> > feel as if I

> > > am handling it okay, but I am so tired, sleeping a lot more than

> > usual, have

> > > no energy. I know they couldn't have gotten worse just because I

> > found out

> > > they are, but that is how it feels to me. I am sure, that given a

> > couple of

> > > days, some energy will come back. don't expect it will be tomorrow

> > or the

> > > next day as I have an appt. with a spinal surgeon for an evaluation

> > of the

> > > lumbar region of my spin. Refuse to have more surgery, at least

> > for another

> > > few months, but hoping there is a shot that will help me.

> > >

> > > Hope you get that call soon. Jan H

> > >

> > > On Mon, Aug 18, 2008 at 5:13 PM, pinkmeetsblue

> > > wrote:

> >

> > >

> > > > diane thank you, thank you to everyone, i am soooo glad i am

> > not alone,

> > > > and will be very glad to get to vandy and see what our options

> > are, as

> > > > your hubby ,mine thinks its all gods will, i on the other hand am

> > more

> > > > selfish right now ,its been a hard day of waiting for the phone

> > to ring

> > > > and give us our appointment date ,it never came they say hopefully

> > > > tommorrow.i feel so angry and i dont know who to be mad at,

> > theres no

> > > > one to blame.i want to scream ,crying hurts my head lol, jeez

> > this is

> > > > awful!!!! i have given this to god 40 times today because its so

> > much

> > > > bigger than i, then i seem to try and take it back ,i am so out of

> > > > control in my mind i cant stand it, so i am just trying to be

> > still and

> > > > know HE is GOD and this is out of my control,but its not easy as

> > you

> > > > all know, i do thank this wonder place with these wonderful

> > people who

> > > > understand and care, even though you all dont even know us. god

> > bless

> > > > barby

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Jan H

> > >

> > >

> > >

[Guest guest]

Thanks Penny. God bless!

Diane

>

> Hi Diane,

>

> I'm so sorry. I understand now. I feel for you and him. I just

> cried when I read your response. It is the right decision for

him.

> I can see that now.

>

> Take care of him and yourself and treasure your time together,

which

> I know you are doing.

>

> Penny

[Guest guest]

Well, I saw the surgeon. The first thing he said when he walked in is " What

can I do for you today? " I told him I didn't want surgery, at least not

now, since I am still recovering from the triple bypass surgery. He said,

" Well then, I can't do anything for you since that is what I do. " I told

him my pcp had said they have shots for the spinal arthritis now, but he

said he doesn't do that, I would have to go to a pain management doctor.

Problem there is that I don't react well to most of the meds they could give

me. He also said that even if I was recovered, he wouldn't operate on me,

too big a risk. scaredy cat. <S> Anyway,, I got the names of two pain

management doctors in the same town. When I get back to my pcp, I will be

getting referrals from her for a kidney doctor, a blood doctor, and maybe a

pain management dr. I don't have time for all this and lead a life too. I

missed my Bible study today to go to this doctor. I did educate him

though. He saw my curved spine on the xrays. I told him it was caused by

the difference of 1 1/2 inches in my legs. He tried to tell me that the

difference in the legs was caused by the scoliosis until he examined my legs

and saw it is a real difference in bone length. We also discussed our

common thyroid problems and then I told him about my cirrhosis and decrease

in kidney function. He just sort of looked at me as if he was thinking

" What is this lady doing alive? "

Good news, he told me I am not to waist my energy and use of my back and

legs on mundane things like household chores, tell someone else to do them.

hahahahahahaha, like that would work. Jan H

On Tue, Aug 19, 2008 at 3:33 PM, pinkmeetsblue

wrote:

> -ahh jan honey you speek my language as i too am a rambler teehee ,my

> kids are 29 28 25 and 24 ... i think lol. i started young, i have 8

> grandbabies now ,i think they are all done phew. back problems are up

> my alley broke my back almost 15 years ago, i get along good have to

> do therapy from time to time but for the most part i am a kickin

> chicken lol,dr. says i have gotten used to my pain over the years,

> but my house has too suffered from it ...badly, i never did get to

> those closets today found my girls old barbie dolls and got caught up

> in remenecing instead of cleaning teehee, i just closed the door,it

> will be there waiting... lurking for a later day lol, what happened

> to your back and who is your surgeon?? i will keep you in my

> prayers ,wow we all have sooo much in common here ,just not

> livers ,we have so much to offer each other, this is a wonderful

> place that god gave some kind sole the idea of starting{ isnt that

> bob?],i never heard from vandy today ,i called the dr. office they

> said ,he had to write a letter send all the labs and tests ,then they

> will call us with an appointment, so i am gonna wait as patiently as

> i can, i loove diane[whom ive never meant] but she settles my mind

> and brings me back to what i know my faith in god ,thank you

> diane,see i can ramble to baby girl lol,bobby had a rough day

> mentally ,his back hurt bad which i am asuming its his kidneys ,not

> his back so hes sound asleep now, god love him.he was awake most of

> the nite. on a sweeter note ,here in ky. it was a very pretty

> day ,such a blue sky that you dont see here often, i took it as a

> sign from the heavens, i love a blue blue sky with a gentle breeze

> blowing, this forum has been a god sent to me ,i love you all!!!!and

> will be concerned and praying for each and everyone of you for the

> rest of my days. ps i to want to go quick and fastas well, i told

> bobby we should pull a thelma and louise lol, but thats against our

> beleifs it was good for a chuckle is all. let me know what your

> surgeon said ,i will be awaiting word ,god speed girl god speed-- In

>

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>,

> " Jan Holman "

> wrote:

> >

> > Barby - you are ahead of me then with just a closet being scarey.

> My whole

> > house is. Nobody else here ever thinks of cleaning anything. I

> have to

> > bribe my grandson with computer time to get him to pick up his

> things. But

> > have to balance that with my need for time. I used to be here all

> day every

> > day I was home with short breaks, now I can use the computer today

> because I

> > just took him to work. But. I have an appt with a back surgeon

> later today,

> > have to leave in 2 hours as it is 1 1/2 hours away. I don't know

> how old

> > your children are, but I wouldn't throw away everything you have

> kept. My

> > children are all over 30 and now getting to the point where some of

> that

> > stuff matters to them.

> >

> > Reading about everybody's pain does hurt. As a person with

> cirrhosis, it

> > also is an indication of what I might go through. I am not sure

> what stage

> > I am in since my doctors don't use that word stage. They use the

> word

> > scale, and I am a 4 out of 4 as to damage on my liver. But I have

> some of

> > the symptoms of ESLD, such as the start of kidney failure etc. It

> also

> > tells me what I could put my family through. When I think about

> it, I hope

> > that I die of a heart attack quickly before they have to go through

> all you

> > and the other caregivers on the group are going through. Yes,

> laughing does

> > help a lot and sometimes crying releases a lot of tension too. You

> might

> > find yourself doing some of both today as you go through that

> closet.

> > Excuse the rambling, but I do that in personal conversations too.

> Just me.

> > No excuse. Jan H

> >

> > On Tue, Aug 19, 2008 at 6:38 AM, pinkmeetsblue

> > wrote:

> >

> > > -thank you jan nice to meet you, sorry to hear about your

> > > troubles ,its funny how you fall into this self pity thing why

> us ,we

> > > are good people , then i meets folks like you all, and it is a

> > > comfort, kind of, because its a double edged sword because i hate

> to

> > > see any of us in pain!!! i have put up a small album of bobby and

> i

> > > and our family ,take a peek and then you will know who your

> talking

> > > to sort of lol. you will be in my prayers,and thanks for the

> advise,

> > > i am gonna try to tackle my living room and bedroom closet today

> and

> > > trust me its very scary in both of them lol, i seem to have never

> > > thrown anything out from my kids childhoods and they dont seem to

> > > want the stuff lol classic just classic ,have a blessed day my

> love--

> > > In

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>

> <livercirrhosissupport%

> 40yahoogroups.com>,

>

> > > " Jan Holman "

> > > <janholman@> wrote:

> > > >

> > > > Barby - we may not know what you look like, but we do know you.

> I

> > > can

> > > > remember doing the same thing you say you did today, putting

> > > something in

> > > > God's hands and then taking it back again. When I had my three

> > > kids by

> > > > myself after my divorce, I felt overwhelmed. I would pray and

> ask

> > > God to

> > > > help me, to show me what to do, to take over. Then something

> would

> > > come up,

> > > > and I was right there again, trying to fix something. One day I

> > > was sitting

> > > > in my garden, again overwhelmed and I heard/felt a voice

> say " I'll

> > > be the

> > > > Father, you only have to be the mother. " If it helps, tell

> > > yourself you are

> > > > the wife, and leave the rest up to God. You aren't the doctor,

> you

> > > aren't

> > > > the mother. I remember one day I had so much to do before

> leaving

> > > home for

> > > > a meeting that night. I had three kids to get ready to take

> along,

> > > dinner

> > > > to make ready for my husband when he came home from work and all

> > > the other

> > > > little things a housewife has to do every day. I looked at the

> > > clock and

> > > > saw I only had 45 minutes left to do anything. So, I told

> myself I

> > > could

> > > > only do 45 minutes of what I had left to do. I was amazed how

> much

> > > I did

> > > > get done in that 45 minutes. Fretting for the hour before hadn't

> > > > accomplished much at all (: Now I am going to suggest something

> I

> > > am not

> > > > very good at myself: Find something you need to get done and get

> > > started on

> > > > it. If it is something complicated, it might take your mind off

> > > all the

> > > > things it is thinking of now.

> > > >

> > > > I got bad news myself on Thursday, my kidneys are going bad. I

> > > feel as if I

> > > > am handling it okay, but I am so tired, sleeping a lot more than

> > > usual, have

> > > > no energy. I know they couldn't have gotten worse just because I

> > > found out

> > > > they are, but that is how it feels to me. I am sure, that given

> a

> > > couple of

> > > > days, some energy will come back. don't expect it will be

> tomorrow

> > > or the

> > > > next day as I have an appt. with a spinal surgeon for an

> evaluation

> > > of the

> > > > lumbar region of my spin. Refuse to have more surgery, at least

> > > for another

> > > > few months, but hoping there is a shot that will help me.

> > > >

> > > > Hope you get that call soon. Jan H

> > > >

> > > > On Mon, Aug 18, 2008 at 5:13 PM, pinkmeetsblue

> > > > <itsabnbthing@>wrote:

> > >

> > > >

> > > > > diane thank you, thank you to everyone, i am soooo glad i am

> > > not alone,

> > > > > and will be very glad to get to vandy and see what our options

> > > are, as

> > > > > your hubby ,mine thinks its all gods will, i on the other

> hand am

> > > more

> > > > > selfish right now ,its been a hard day of waiting for the

> phone

> > > to ring

> > > > > and give us our appointment date ,it never came they say

> hopefully

> > > > > tommorrow.i feel so angry and i dont know who to be mad at,

> > > theres no

> > > > > one to blame.i want to scream ,crying hurts my head lol, jeez

> > > this is

> > > > > awful!!!! i have given this to god 40 times today because its

> so

> > > much

> > > > > bigger than i, then i seem to try and take it back ,i am so

> out of

> > > > > control in my mind i cant stand it, so i am just trying to be

> > > still and

> > > > > know HE is GOD and this is out of my control,but its not easy

> as

> > > you

> > > > > all know, i do thank this wonder place with these wonderful

> > > people who

> > > > > understand and care, even though you all dont even know us.

> god

> > > bless

> > > > > barby

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

> > > > --

> > > > Jan H

> > > >

> > > >

> > > >

[Guest guest]

Jan, honey, I just am at a loss for words! You, my dear, are an

amazign woman! I know you must be feelin so overwhelmed. Well, at

least you won't have to worry about that mundane stuff now, LOL!!!!

Seriously, I am praying for you that the Lord will guide you through

the many decisions you must make over the coming days. I am asking

Him to guide you to the doctors whom He has planned to care for you

so that you don't have to waste precious time and energy running from

one to the other just to find a good one. Hang in there, my friend.

You are loved and prayed for. God bless!

Love and hugs......

Diane C. from TN

>

> Well, I saw the surgeon. The first thing he said when he walked in

is " What

> can I do for you today? " I told him I didn't want surgery, at

least not

> now, since I am still recovering from the triple bypass surgery.

He said,

> " Well then, I can't do anything for you since that is what I do. "

I told

> him my pcp had said they have shots for the spinal arthritis now,

but he

> said he doesn't do that, I would have to go to a pain management

doctor.

> Problem there is that I don't react well to most of the meds they

could give

> me. He also said that even if I was recovered, he wouldn't operate

on me,

> too big a risk. scaredy cat. <S> Anyway,, I got the names of two

pain

> management doctors in the same town. When I get back to my pcp, I

will be

> getting referrals from her for a kidney doctor, a blood doctor, and

maybe a

> pain management dr. I don't have time for all this and lead a life

too. I

> missed my Bible study today to go to this doctor. I did educate him

> though. He saw my curved spine on the xrays. I told him it was

caused by

> the difference of 1 1/2 inches in my legs. He tried to tell me

that the

> difference in the legs was caused by the scoliosis until he

examined my legs

> and saw it is a real difference in bone length. We also discussed

our

> common thyroid problems and then I told him about my cirrhosis and

decrease

> in kidney function. He just sort of looked at me as if he was

thinking

> " What is this lady doing alive? "

>

> Good news, he told me I am not to waist my energy and use of my

back and

> legs on mundane things like household chores, tell someone else to

do them.

> hahahahahahaha, like that would work. Jan H

[Guest guest]

Thanks Diane - I have prayed for many things, but never thought of praying

that I would get to the right doctor without having to winnow through the

bad ones. Sometimes I feel so blessed. If I am in ESLD, I have had it

pretty easy so far. I had encepholopathy when I was first dignosed, but cut

down on the protein and can't say I have had a problem since. Of course, my

memory is terrible, but I don't get misplaced like I did then. I don't

stand in one place and think I am in another, or in a different time.

Most of the time, I really don't feel overwhelmed, it just seems natural.

weird huh? Granted, I would like to get this house cleaned up, even get to

move, but have come to the conclusion that isn't possible. Maybe now that I

have given up those two things, they will actually happen. I don't know

what I would do without my church, Bible Studies and friends, especially

friends here. One of the churches here in town has been praying for me for

months. Their pastor goes to one of my Bible studies. I ran into him in a

restaurant about a week ago. I asked him to thank everybody for their

prayers, but please don't stop, just change the reason from my heart to my

liver, kidneys and back. And those of you out there praying for me, please

pray that my outside fingers lose the numbness and pin pricks they have

experienced since my bypass. Thanks everybody. Jan H

On Wed, Aug 20, 2008 at 12:04 AM, Diane Chandler wrote:

> Jan, honey, I just am at a loss for words! You, my dear, are an

> amazign woman! I know you must be feelin so overwhelmed. Well, at

> least you won't have to worry about that mundane stuff now, LOL!!!!

> Seriously, I am praying for you that the Lord will guide you through

> the many decisions you must make over the coming days. I am asking

> Him to guide you to the doctors whom He has planned to care for you

> so that you don't have to waste precious time and energy running from

> one to the other just to find a good one. Hang in there, my friend.

> You are loved and prayed for. God bless!

>

> Love and hugs......

>

> Diane C. from TN

>

>

> >

> > Well, I saw the surgeon. The first thing he said when he walked in

> is " What

> > can I do for you today? " I told him I didn't want surgery, at

> least not

> > now, since I am still recovering from the triple bypass surgery.

> He said,

> > " Well then, I can't do anything for you since that is what I do. "

> I told

> > him my pcp had said they have shots for the spinal arthritis now,

> but he

> > said he doesn't do that, I would have to go to a pain management

> doctor.

> > Problem there is that I don't react well to most of the meds they

> could give

> > me. He also said that even if I was recovered, he wouldn't operate

> on me,

> > too big a risk. scaredy cat. <S> Anyway,, I got the names of two

> pain

> > management doctors in the same town. When I get back to my pcp, I

> will be

> > getting referrals from her for a kidney doctor, a blood doctor, and

> maybe a

> > pain management dr. I don't have time for all this and lead a life

> too. I

> > missed my Bible study today to go to this doctor. I did educate him

> > though. He saw my curved spine on the xrays. I told him it was

> caused by

> > the difference of 1 1/2 inches in my legs. He tried to tell me

> that the

> > difference in the legs was caused by the scoliosis until he

> examined my legs

> > and saw it is a real difference in bone length. We also discussed

> our

> > common thyroid problems and then I told him about my cirrhosis and

> decrease

> > in kidney function. He just sort of looked at me as if he was

> thinking

> > " What is this lady doing alive? "

> >

> > Good news, he told me I am not to waist my energy and use of my

> back and

> > legs on mundane things like household chores, tell someone else to

> do them.

> > hahahahahahaha, like that would work. Jan H

>

>

>

--

Jan H

[Guest guest]

It is amazing how much it helps us out just to know that others are

lifting us up in prayer, isn't it? I often have folks say to

me " Well, I can't do anything for you but pray; but I'll be happy to

do that. " I really thing prayer is the best help we can offer

someone cause when push comes to shove, it's the one thing that can

really change our circumstances and our attitudes about our

circumstances. Luv ya, Jan!

Diane C. from TN

>

> Thanks Diane - I have prayed for many things, but never thought of

praying

> that I would get to the right doctor without having to winnow

through the

> bad ones. Sometimes I feel so blessed. If I am in ESLD, I have

had it

> pretty easy so far. I had encepholopathy when I was first

dignosed, but cut

> down on the protein and can't say I have had a problem since. Of

course, my

> memory is terrible, but I don't get misplaced like I did then. I

don't

> stand in one place and think I am in another, or in a different

time.

>

> Most of the time, I really don't feel overwhelmed, it just seems

natural.

> weird huh? Granted, I would like to get this house cleaned up,

even get to

> move, but have come to the conclusion that isn't possible. Maybe

now that I

> have given up those two things, they will actually happen. I don't

know

> what I would do without my church, Bible Studies and friends,

especially

> friends here. One of the churches here in town has been praying

for me for

> months. Their pastor goes to one of my Bible studies. I ran into

him in a

> restaurant about a week ago. I asked him to thank everybody for

their

> prayers, but please don't stop, just change the reason from my

heart to my

> liver, kidneys and back. And those of you out there praying for

me, please

> pray that my outside fingers lose the numbness and pin pricks they

have

> experienced since my bypass. Thanks everybody. Jan H