Re: I need some advice for end stage signs..

[Guest guest]

Dear Laurie and Kelley

I am sorry I am unable to help with your questons, but big hugs to

you both from the bottom of the world.

You have been married for as long as Graham and I and I am sure like

us, you are a team, gaining strength from each other. Surround each

other with love.

again best wishes to you both

from New Zealand

>

> I have been reading these messages and I have found real hope and

> comfort from everyone's postings. But now I need to know something.

> My husband has been turned down for ever getting a transplant

because

> of coronary artery disease. He takes Plavix and will have to

> indefinitely. So, now he realizes his PSC will get him first.We

know

> his MELD score hovers around 20-24 Lately he has been experiencing

> fever spikes. Sometimes we go the ER and sometimes we just take

Cipro

> at home. But each time he gets weaker.

> None of the doctors have explained to me what will happen when he

nears

> death. Will the fever make him go into a coma? Will he pass away

from

> theses fevers? What signs should I watch for? He has been told he

is

> terminal and he is a Christian.We have comfort in the life after

death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

Dear Laurie and Kelley

I am sorry I am unable to help with your questons, but big hugs to

you both from the bottom of the world.

You have been married for as long as Graham and I and I am sure like

us, you are a team, gaining strength from each other. Surround each

other with love.

again best wishes to you both

from New Zealand

>

> I have been reading these messages and I have found real hope and

> comfort from everyone's postings. But now I need to know something.

> My husband has been turned down for ever getting a transplant

because

> of coronary artery disease. He takes Plavix and will have to

> indefinitely. So, now he realizes his PSC will get him first.We

know

> his MELD score hovers around 20-24 Lately he has been experiencing

> fever spikes. Sometimes we go the ER and sometimes we just take

Cipro

> at home. But each time he gets weaker.

> None of the doctors have explained to me what will happen when he

nears

> death. Will the fever make him go into a coma? Will he pass away

from

> theses fevers? What signs should I watch for? He has been told he

is

> terminal and he is a Christian.We have comfort in the life after

death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

Laurie,

I wanted to reply to your post, but I have no idea what to say. Just

know that you and your family are in my prayers.

Love,

[Guest guest]

Laurie,

I'm with . Please know that you, your husband and your family are

in my family's prayers.

Please let us know if there is anything else we can do to support you.

God's peace be with you all,

Wife of Ian, 38 - dx PSC 2002

[Guest guest]

I agree with Barb that considering a second opinion especially if the

heart disese is mild or moderate and talking with a hospice

organization would be a good idea. Hospice nurses are expert on

answering these questions because it is their specialty. Some of the

best nurses in the world are hospice nurses. I'm a physician that

practices internal medicine in the US and many of my patients are

toward the end of their lives, so I have a lot of experience with

hospice care. It would be worthwhile to consider enrolling in

hospice. For medicare the only requirement is that your doctor sign

of form stating the diagnosis and that it wouldn't be a surprise if

death occurred within 6 months. There is concept that this service

is to replace going to the hospital for care, but you can just opt

off hospice if you want some treatment in the hospital and the opt on

when you get out of the hospital.

The advantages of hospice are:

You can rely of the experience of very good nurses to walk with you

through a potientally difficult experience.

Aides, nurses, and therapists can deliver care in the home and can be

very helpful.

Medications to treat suffering that the disease causes are paid for.

Potiental disadvantages:

Your doctor might focus on comfort measures rather than treating

conditions. This is good goal if it aligns with the patients

expectations. If you have a good relationship with your doctor you

can work on when it is appropriate and what your goals are.

As far as dying from liver disease. I've only seen it half a dozen

times and the signs and course depend on the cause. I'll mention the

3 most common causes so that you can see that it is different

depending on the actual cause. This can be a sensitive subject and

some readers might want to skip the rest of this post. Most people

that ask such a direct question prefer a straightford answer.

1. Bleeding especially from esphageal varices: This causes a rapid

drop in blood pressure causing rapid weakness and then passing out.

It all could happen withing several minutes or I've seen it take up

to two day. If it is prolonged it is difficult to see your loved one

vommitting blood. Some would prefer this way to go as there is less

lingering.

2. Infection. Especially from infected ascites (fluid around the

liver) or bile infection or pnemonia which would start with an

illness with a fever and weakness and confusion. This can run its

course within a few days or can take a few weeks. Pneumonia was

considered the " old man's friend " in that it would take someone's

life before they lost their dignity.

3. Liver failure and encephalopathy. When the toxins build up the

brain becomes very foggy and eventually a coma ensues. This can occur

rapidly as a complication of #1 or #2 or can be very gradual.

You can see that it is very helpful to have an experienced hospice

nurse to answer questions and help you figure out which symptoms are

important and which are treatable.

[Guest guest]

Laurie,

I hope that some other transplant center may be willing to accept

Kelley in spite of his cardiac problems. But being accepted does not

provide any guarantees, especially if there are complicating factors.

You ask what may happen at the end. In addition to the 3 major direct

causes of death in ESLD - bleeds, infections and encephalopathy - I

think hepatorenal syndrome, its resulting reduction in cardiac output

and increasing weakness should be mentioned as a possibility,

paarticularily for someone with low cardiac function to begin with.

Tim R

>

> I have been reading these messages and I have found real hope and

> comfort from everyone's postings. But now I need to know something.

> My husband has been turned down for ever getting a transplant because

> of coronary artery disease. He takes Plavix and will have to

> indefinitely. So, now he realizes his PSC will get him first.We know

> his MELD score hovers around 20-24 Lately he has been experiencing

> fever spikes. Sometimes we go the ER and sometimes we just take Cipro

> at home. But each time he gets weaker.

> None of the doctors have explained to me what will happen when he nears

> death. Will the fever make him go into a coma? Will he pass away from

> theses fevers? What signs should I watch for? He has been told he is

> terminal and he is a Christian.We have comfort in the life after death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

Laurie,

I hope that some other transplant center may be willing to accept

Kelley in spite of his cardiac problems. But being accepted does not

provide any guarantees, especially if there are complicating factors.

You ask what may happen at the end. In addition to the 3 major direct

causes of death in ESLD - bleeds, infections and encephalopathy - I

think hepatorenal syndrome, its resulting reduction in cardiac output

and increasing weakness should be mentioned as a possibility,

paarticularily for someone with low cardiac function to begin with.

Tim R

>

> I have been reading these messages and I have found real hope and

> comfort from everyone's postings. But now I need to know something.

> My husband has been turned down for ever getting a transplant because

> of coronary artery disease. He takes Plavix and will have to

> indefinitely. So, now he realizes his PSC will get him first.We know

> his MELD score hovers around 20-24 Lately he has been experiencing

> fever spikes. Sometimes we go the ER and sometimes we just take Cipro

> at home. But each time he gets weaker.

> None of the doctors have explained to me what will happen when he nears

> death. Will the fever make him go into a coma? Will he pass away from

> theses fevers? What signs should I watch for? He has been told he is

> terminal and he is a Christian.We have comfort in the life after death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

Laurie,

I hope that some other transplant center may be willing to accept

Kelley in spite of his cardiac problems. But being accepted does not

provide any guarantees, especially if there are complicating factors.

You ask what may happen at the end. In addition to the 3 major direct

causes of death in ESLD - bleeds, infections and encephalopathy - I

think hepatorenal syndrome, its resulting reduction in cardiac output

and increasing weakness should be mentioned as a possibility,

paarticularily for someone with low cardiac function to begin with.

Tim R

>

> I have been reading these messages and I have found real hope and

> comfort from everyone's postings. But now I need to know something.

> My husband has been turned down for ever getting a transplant because

> of coronary artery disease. He takes Plavix and will have to

> indefinitely. So, now he realizes his PSC will get him first.We know

> his MELD score hovers around 20-24 Lately he has been experiencing

> fever spikes. Sometimes we go the ER and sometimes we just take Cipro

> at home. But each time he gets weaker.

> None of the doctors have explained to me what will happen when he nears

> death. Will the fever make him go into a coma? Will he pass away from

> theses fevers? What signs should I watch for? He has been told he is

> terminal and he is a Christian.We have comfort in the life after death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

Laurie,

Please know that you and Kelley are in my thoughts and prayers as you both go through these trying times.

May God wrap you in his loving arms.

God bless, Larry, 57, Baltimore, UC, PSC 95See what's free at AOL.com.

[Guest guest]

Laurie,

Please know that you and Kelley are in my thoughts and prayers as you both go through these trying times.

May God wrap you in his loving arms.

God bless, Larry, 57, Baltimore, UC, PSC 95See what's free at AOL.com.

[Guest guest]

Laurie,

Please know that you and Kelley are in my thoughts and prayers as you both go through these trying times.

May God wrap you in his loving arms.

God bless, Larry, 57, Baltimore, UC, PSC 95See what's free at AOL.com.

[Guest guest]

I am so very sorry to read this. We have dealt with relatives and

friends with various terminal illnesses and I would urge you to get

hospice care for your husband. In my opinion, hospice volunteers and

professionals have a special " calling " and help families as much as

their patients. The supportive, loving care that they give can make a

real difference in helping you all through this very difficult time.

Penny

What signs should I watch for? He has been told he is

> terminal and he is a Christian.We have comfort in the life after death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

I am so very sorry to read this. We have dealt with relatives and

friends with various terminal illnesses and I would urge you to get

hospice care for your husband. In my opinion, hospice volunteers and

professionals have a special " calling " and help families as much as

their patients. The supportive, loving care that they give can make a

real difference in helping you all through this very difficult time.

Penny

What signs should I watch for? He has been told he is

> terminal and he is a Christian.We have comfort in the life after death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

I am so very sorry to read this. We have dealt with relatives and

friends with various terminal illnesses and I would urge you to get

hospice care for your husband. In my opinion, hospice volunteers and

professionals have a special " calling " and help families as much as

their patients. The supportive, loving care that they give can make a

real difference in helping you all through this very difficult time.

Penny

What signs should I watch for? He has been told he is

> terminal and he is a Christian.We have comfort in the life after death.

> I just want to know how he will pass.

>

> Sorry to have to ask this.

>

> Sincerely,

> Laurie , Kelley's wife of 33 years

>

[Guest guest]

Laurie -- I've had a couple of these conversations with my son's

doctors. As others here have noted, there are several distinct paths

that liver failure can take. But regardless of how the end comes, the

doctors have said it will likely be much more difficult for me than for

Q. That in the majority of cases, the patient can be kept comfortable

until he loses awareness.

I found that comforting.

I think we all hope for a " good " death.

Pam

(mom to Quantell, 17, dx 1996, tx 2001, recurrence with AIH overlap

2006)

[Guest guest]

Laurie -- I've had a couple of these conversations with my son's

doctors. As others here have noted, there are several distinct paths

that liver failure can take. But regardless of how the end comes, the

doctors have said it will likely be much more difficult for me than for

Q. That in the majority of cases, the patient can be kept comfortable

until he loses awareness.

I found that comforting.

I think we all hope for a " good " death.

Pam

(mom to Quantell, 17, dx 1996, tx 2001, recurrence with AIH overlap

2006)