barbara, re: Quality of Life, post-tx

[Guest guest]

, jim had a living related transplant...

I have a twin sister (identical) who wants to give me a piece of her liver which would be very nice as I may not have problems with anti-rejection drugs. Jim do you have to take a lot of drugs since your tx? Do they cause much problem?

Thank you for your encouraging letter I am feeling much better since I read it. UP with the PSC-support group! :~)

Barbara (UK)

[Guest guest]

Now that would be very interesting. You'll probably live to be 90! )

Who ho a new life now THAT WOULD BE G R E A T :~))

[Guest guest]

barbara, based solely on our own experience, jim and i respectfully disagree with your doctors... i just read your post out loud to jim, and we would like to give you some HOPE. we have to agree with roy's posted response to you, about his transplanted wife, susan -- jim (who received a living related donor from our 23-year old son, jason, just this past december 7th) says he feels G-R-E-A-T. jim says that before, he had no energy, was 100% weak, just literally laid around the house all day with a body slowly becoming more and more "pregnant" with ascites, absolutely NO appetite... "sick and tired of being sick and tired" is how i referred to it.

now he is The Man Who Loves To Putter Around the House, he has boundless energy, he walks everyday, sometimes going to the fitness center 2x a day (not to mention at least 2x a day to Home Depot, our friendly neighborhood hardware store and fix-it center!), he has his (healthy, not voracious) appetite back, he is trim and at his high school weight... he says, and i quote, "i can finally dream about all these things i can do, which can now come true, where before i didn't have hope of doing anything."

we cannot overly stress to you how jim's quality of life has improved... not just compared to the months before his transplant, but let's talk LFTs: i would put the results of his liver function tests at, honestly, close to 20 years ago. his pre-tx bilirubin of 15.5? it's now .4, and unbelievably, it's still decreasing... the doctors are amazed. the only post-tx problem we have encountered is the mild, not-uncontrollable-by-drugs resurgence of his ulcerative colitis (something the tx surgeons told us was not uncommon, and we should watch out for).

personally, jim and i just feel this all has something to do our son's healthy 23-year old liver, which started producing bile on the operating table even BEFORE the surgeons were completely finished with the transplant! this belief is borne out by ICU nursing staff who repeatedly said jim (as a patient) was "cruising" through the recuperative process. sure, we had a couple genuinely scary moments in ICU, there were a few very concerning ups and downs, but we believe the nurses and doctors know what they're talking about; USC university hospital in los angeles is by no means the largest transplant center in america, however they've done the most adult-to-adult living donor liver transplants in the state of california (which is where our insurance mandated we had to remain for the surgery to be covered).

for a change, instead of staying down here to do it, we plan to go up to the tx center in los angeles this coming tuesday for tx clinic, to do jim's labs, and visit everyone in ICU, the resident doctors, so they can be happily "jolted" by jim's incredible change of appearance in skin color, whites of the eyes, weight, etc. he looked so much better leaving the hospital 8 days out than he did going in that even then (at discharge), the doctors were so happy for him, saying "THIS is why we are doctors." so seeing jim now ought to bless the socks off them. besides, i really want to take everyone on the ICU floor a huge basket of fresh fruit (normally, they are gifted with way too much candy and too many cookies).

i say all this to you, barbara, NOT to boast about jim's health -- goodness, no! -- but, rather, to ASSURE you that under the right circumstances, you CAN feel better with a transplant... so we're completely at a loss as to WHY ON EARTH your doctors would say anything to the contrary.

hmmm... ok, so what exactly do i mean when i say "under the right circumstances"? well, for starters, jim had a living related transplant... which means he didn't have to proceed up the cadaveric waitlist (he seemed hopelessly stuck in status 3, anyway... well, for the 16+ months he was waitlisted at a local hospital, jim seemed to remain at the bottom of his type A blood list, which contained 40+ people...); we believe his LRT (God bless our dear son!) protected him against having to struggle through receiving perhaps a fair or poor cadaveric liver (yes, we were informed they actually do "grade" livers good/fair/poor.... and they WILL transplant a less-than-perfect liver into you, probably figuring it's better than the dying one you have). as sick as jim was pre-tx, because we pursued living donor, he didn't have to reach "critical" to finally get his liver (and i believe this factors in as key, with respect to how well jim is doing now). interestingly, the process of jim getting his living-related liver at another hospital meant he had to go through another transplant evaluation... and get waitlisted for a (cadaveric) liver. this was part of the tx center's protocol. shortly before the living donor transplant, we received a "form letter" informing jim he'd been accepted to their waitlist, but as he was not hospitalized, they didn't want him to think he'd receive a (cadaveric) liver any time soon!

and last but not least, receiving our son's liver probably is keeping post-tx complications/rejection issues to a bare minimum.

your doctors are experts in their field, and that deserves a modicum of respect. NEVERTHELESS, i'd LOVE the chance to personally speak with each and every one of them, to ask point-blank HOW they could say what they said to you... something which can negatively affect your hope! we think you are absolutely right to disagree with them. heck, if you want, print this out and shove it in their faces. :-)

hangest thou in there, barbara!

maureen ( & jim -- UC '84; PSC '96 [elevated LFTs from '84 to & through '01 are now a thing of the past, thanks to a Living Related Transplant 12/7/01 courtesy of our wonderful donor son jason, 23. what a gift!]; UC re-dx'd '02

[Guest guest]

> In a message dated 24/02/02 16:39:25 GMT Standard Time,

I have a twin sister (identical) who wants to give me a piece of her

liver

> which would be very nice as I may not have problems with anti-

rejection

> drugs.

Now that would be very interesting. You'll probably live to be

90! )

Andi

[Guest guest]

Mareen,

You are such a blessing! I sat hear reading your e-mail and it makes me want to celebrate! (If only I had a little more energy. :-) Thanks so much for sharing. We, pre-tx PSCers, all aspire to be "just like Jim"!

I've mentioned to my husband a few times that he should lurk for awhile to because of that the caregivers have to say and share. I really think it would do him good to read what some caregivers have to say. Also, he suffers from Chronic Fatigue Syndrome and I think it is hard for him to be ill when he feels he is suppose to be caring for me. You're a good example of how there can be two sickies in the house and still maintain. We just take care of one another. Isn't that the way it's suppose to be??? I know you believe it is too. I've read your posts.

Hugs to both of you.