Re: Transplant...?

[Guest guest]

, First you need to know that I am a caregiver so my comments need to be taken in that context. My husband is in Stage 4 Cirrohsis and has been for about a year. He had blood work done this weekend and his MELD score went from 11 to 9. He is very sick and on LTD and SSD.

We both totally understand your comments on wishing for a tx - but not. It's a double edged sword. We want his blood work to get bad so his meld score will go higher and he will get a tx sooner and get back to life. However, we also know that this may not work out the way we want, and we want his MELD to stay low where he is sick but managing pretty well. I can imagine that most people in this situation feel this way from time to time. It is a difficult part of this whole disease - it's hard to know what to wish for. In the long run, it doesn't matter what we think or wish for because we don't get to make the choice. Since we are at the same point you are - pre-tx, we can ony speculate as to how it will be after tx.

My best advise (and oh, how I love to give advise) is to live each day to the fullest and expect to feel and do well. A positive attitude and expecting to feel well will help you more than anything else - in my humble opinion. :-)

LOVE & LIGHT

Barbara (Wife of , PSC'07, HE, Chronic Pancr, Osteo, Diabetes, Listed)

Subject: Transplant...?To: Date: Monday, December 8, 2008, 9:38 AM

Hi all,As I'am sure you all are, I've been avidly following Tom's progress with all my entremities crossed for him, his family and donor. I was reading through my past medical letters results etc.. (i keep a home record)and noticed that they mensioned i have progressed through to cirrhosis and my recent bloods say 'known cirrohsis' on the top. Does this mean Im at stage 4? If so can anyone let me know how long it took for them to reach transplant stage? I know we are all different but this has shocked me a little. I've also found myself over last year or so almost wishing I could have a transplant asap and get my life back, start a career etc... Mad as this may seem has anyone else had these thoughts? Is life after transplant like it was before psc, am i going to get an almost 'normal' life? PLEASE dont get me wrong i am petrified of having a transplant. BUT these thoughts do go round and

round..Best Wishes to All(UK, PSC & UC 2002)

[Guest guest]

, First you need to know that I am a caregiver so my comments need to be taken in that context. My husband is in Stage 4 Cirrohsis and has been for about a year. He had blood work done this weekend and his MELD score went from 11 to 9. He is very sick and on LTD and SSD.

We both totally understand your comments on wishing for a tx - but not. It's a double edged sword. We want his blood work to get bad so his meld score will go higher and he will get a tx sooner and get back to life. However, we also know that this may not work out the way we want, and we want his MELD to stay low where he is sick but managing pretty well. I can imagine that most people in this situation feel this way from time to time. It is a difficult part of this whole disease - it's hard to know what to wish for. In the long run, it doesn't matter what we think or wish for because we don't get to make the choice. Since we are at the same point you are - pre-tx, we can ony speculate as to how it will be after tx.

My best advise (and oh, how I love to give advise) is to live each day to the fullest and expect to feel and do well. A positive attitude and expecting to feel well will help you more than anything else - in my humble opinion. :-)

LOVE & LIGHT

Barbara (Wife of , PSC'07, HE, Chronic Pancr, Osteo, Diabetes, Listed)

Subject: Transplant...?To: Date: Monday, December 8, 2008, 9:38 AM

Hi all,As I'am sure you all are, I've been avidly following Tom's progress with all my entremities crossed for him, his family and donor. I was reading through my past medical letters results etc.. (i keep a home record)and noticed that they mensioned i have progressed through to cirrhosis and my recent bloods say 'known cirrohsis' on the top. Does this mean Im at stage 4? If so can anyone let me know how long it took for them to reach transplant stage? I know we are all different but this has shocked me a little. I've also found myself over last year or so almost wishing I could have a transplant asap and get my life back, start a career etc... Mad as this may seem has anyone else had these thoughts? Is life after transplant like it was before psc, am i going to get an almost 'normal' life? PLEASE dont get me wrong i am petrified of having a transplant. BUT these thoughts do go round and

round..Best Wishes to All(UK, PSC & UC 2002)

[Guest guest]

Hi I myself have been on the transplant list for almost a year I was diagnosed eight years ago I was in the beginning of stage four. I have been in ciroshis for almost 7 years I was finally put on the list. my meld shot to a 19 in June then back to 11 in July, I was told in June I was number five on the list and probably would be transplanted in summer no later then Nov. yet When my meld changed I was moved back down and to another year or sooner. So now I am at 12 but I tend to spike up and down drastically so its hard to say. Yes its hard and I don't remember what its like to feel normal but I know that one day I will be well again so have patience, faith and enjoy everyday you have and it will all work out

Hi all,As I'am sure you all are, I've been avidly following Tom's progress with all my entremities crossed for him, his family and donor. I was reading through my past medical letters results etc.. (i keep a home

record)and noticed that they mensioned i have progressed through to cirrhosis and my recent bloods say 'known cirrohsis' on the top. Does this mean Im at stage 4? If so can anyone let me know how long it took

for them to reach transplant stage? I know we are all different but this has shocked me a little. I've also found myself over last year or so almost wishing I could have a transplant asap and get my life back,

start a career etc... Mad as this may seem has anyone else had these thoughts? Is life after transplant like it was before psc, am i going to get an almost 'normal' life? PLEASE dont get me wrong i am

petrified of having a transplant. BUT these thoughts do go round and round..Best Wishes to All(UK, PSC & UC 2002)

[Guest guest]

I've been on the transplant list for 2.5 years. My

MELD is 11.....and whenever I ask 'when'?, my

transplant coordinator says, 'honey, you aren't high

on the list, don't expect a transplant anytime soon,

however......Last April, I was called up as the back

up person for a liver that was a match. No

transplant though.

It is perfectly normal to WANT a transplant and yet

NOT want it. What you really want is your life back

and to not go through surgery.

I struggle with the reality that someone will have to

die for me to get my life back....... I don't want the

pain and recovery of surgery - have already had 3

major surgeries....a tumor off the inside of my spine,

2 colon surgeries....so I know what I'm talking about.

but to get my 'normal' life back (whatever that is),

I have to go through it again.

You're normal.

Cindy Baudoux-Northrup

[Guest guest]

I've been on the transplant list for 2.5 years. My

MELD is 11.....and whenever I ask 'when'?, my

transplant coordinator says, 'honey, you aren't high

on the list, don't expect a transplant anytime soon,

however......Last April, I was called up as the back

up person for a liver that was a match. No

transplant though.

It is perfectly normal to WANT a transplant and yet

NOT want it. What you really want is your life back

and to not go through surgery.

I struggle with the reality that someone will have to

die for me to get my life back....... I don't want the

pain and recovery of surgery - have already had 3

major surgeries....a tumor off the inside of my spine,

2 colon surgeries....so I know what I'm talking about.

but to get my 'normal' life back (whatever that is),

I have to go through it again.

You're normal.

Cindy Baudoux-Northrup

[Guest guest]

I've been on the transplant list for 2.5 years. My

MELD is 11.....and whenever I ask 'when'?, my

transplant coordinator says, 'honey, you aren't high

on the list, don't expect a transplant anytime soon,

however......Last April, I was called up as the back

up person for a liver that was a match. No

transplant though.

It is perfectly normal to WANT a transplant and yet

NOT want it. What you really want is your life back

and to not go through surgery.

I struggle with the reality that someone will have to

die for me to get my life back....... I don't want the

pain and recovery of surgery - have already had 3

major surgeries....a tumor off the inside of my spine,

2 colon surgeries....so I know what I'm talking about.

but to get my 'normal' life back (whatever that is),

I have to go through it again.

You're normal.

Cindy Baudoux-Northrup