Re: Is a Tansplant worth it?

[Guest guest]

Hi ,

Yes -- it is totally worth it! Taking care of my husband after his

transplant (and leading up to it) was a lot of work. I was mentally

and physically drained. But, I never once felt he was a burden. It was

all worth it. If you would like to talk to him, let me know -- I'll

put you in touch.

Best wishes,

Dawn

www.carlanddawn.blogspot.com

>

> Before I went for my transplant eval. I was not sure I wanted one.

> The pain, expense, the drugs etc. I felt better about it after the

> eval process. Well I am on the list but not totally convinced that I

> want to go through with it. I think the $$$$$ maybe better spent

> taking the grandkids to disney world!

>

> After reading the messages and on going issues that so many seem to

> have, I am still not sure going through this is worth it. My main

> reason to do it is for my kids and grandkids, but I live a 1000 miles

> away so it is not like I am really there for them anyway.

>

> I am a RN so I know that some people fly through surgery and recovery,

> but I also see alot of the other side too. I do not want to be a

> burden to my family.

>

> What are your thoughts?

>

[Guest guest]

Dear ,

Yes ,yes a million times a Transplant is worth it. You sound to me like you might be still in the diagnosis phase. Are you? If you would like to email me privately please do so. I would love to talk with you.

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I think that the answer to this question is based on several factors.

The only problem is that some of them are unknown, and can only be

guessed at. Basically, (in my mind) it depends on four things:

1. What are your chances of death without a transplant?

2. What are your chances of death with a transplant?

3. How do you feel without a transplant?

4. How would you feel with a transplant?

Of all these, the only one you know 100% is how you feel now, and even

with that you don't know for sure how you will feel by the time you get

a transplant.

In my case the calculation was pretty easy: I felt horrible, and it was

pretty obvious I was dying (I ran my numbers through Mayo's PSC

mortality calculator and came back with 30% chance of living 1 year).

The outcome of the transplant didn't have to be super good to be better

than not having one, and in my case, the outcome has been very good.

The transplant itself went so easily as to almost seem trivial (I know

that its an enormous event, but it didn't really feel that way), and I

now feel better than in many years.

So I can't tell you that it will be worth it, but I can tell you that in

some (probably most) cases, it is worth it. It took me a while to

adjust to being listed and to the idea that I probably would need a

transplant someday, but by the time I got there I was more than ready.

I couldn't wait for them to wheel me into the operating room!

athan

[Guest guest]

In the case of my husband, I would say Yes! It was worth it. Now,

five years before the transplant when we first found out he had PSC

and that he would likely need a transplant, I may have had a

different answer; but became so sick before the transplant that

it really and truly was the only way he was going to live. The two

years prior to the transplant were spent in and out of the hospital.

He would be in the hospital for two weeks and out for one. Sometimes

out for only a few days before he would be readmitted. The nurses

and doctors at the hospital were like family because we were there so

much. That isn't a way to live. He was in the hospital locally when

we got the call to go for the transplant. We didn't get to spend

much time with our daughter who was born two weeks after his J pouch

surgery, and right about the time that his health started declining.

She stayed with my parents or other family members while I took care

of her daddy. Even when we were at home with her, he was too tired

to play with her. It has been almost a year, and even though it was

a hard year at times, it was never as hard as the couple of years

before it. It has been such a blessing to see my husband off my

couch. In terms of money~ We are actually getting some

doctor/hospital bills paid off for once. Which didn't happen before

transplant because he was always in the hospital. Also, in our case,

he had his transplant at the end of the year after our out of pocket

max for the year had been met. We paid zero for the transplant. It

was totally covered by insurance. I was lucky enough to have a

wonderful job, where I belong to a " sick bank " . Each employee

donates a couple of days a year in case someone has a major family

illness. I took off six weeks of work and was paid my regular pay

the entire time. I was truly blessed. So, in our case, the answer

is YES, it was worth it!

[Guest guest]

My son was within a week of dying from his PSC. Today he is at college, feeling great and having a normal life. Yes, yes, yes, it is worth it. I suspect you don't feel that sick right now. Marti wrote: Before I went for my transplant eval. I was not sure I wanted one. The pain, expense, the drugs etc. I felt better about it after the eval process. Well I am on the list but not totally convinced that I want to go through with it. I think the $$$$$ maybe better spent

taking the grandkids to disney world! After reading the messages and on going issues that so many seem to have, I am still not sure going through this is worth it. My main reason to do it is for my kids and grandkids, but I live a 1000 miles away so it is not like I am really there for them anyway.I am a RN so I know that some people fly through surgery and recovery, but I also see alot of the other side too. I do not want to be a burden to my family.What are your thoughts? __________________________________________________

[Guest guest]

Thank you everyone. I, too, was having doubts and to hear your enthusiasm

collectively is just what I needed.

Thanks,

Penny T