I've heard that about Mayo Clinic and if Pittsburgh denies us that is definitely where we are going. They say on their website that they offer living donor to end-stage liver patients who have other complications because doing it sooner rather than later is important, so we'll see what happens. I would love information about them.
I live in New Jersey, we are going to pittsburgh first because they have an extensive program and are a little more aggressive than the hospital we were at first and they are slightly closer than us. I was approved for living donor there but they don't want to do it now because of the slightly increased risk. There's more to it than that but I don't want to get into it on a public forum.
I'm very happy that you are now going to be able to get this operation. It's so good when there are doctors out there who are willing to go the extra mile for thier patients. I will say a prayer that you come through the surgery well.
Yeah, he's been on the list five years. In the region we are in the wait is over 2 years, but that's only if there aren't sicker people than you on the list. Most of the time there are and at the hospital we were at, if your MELD wasn't above 25, you weren't getting a transplant.
Thanks for all the info.
Pink - Thanks for the words of encouragment and I'm praying for you.
Hi Misslissa, Welcome to HW. My husband was recently transplanted, 3 weeks ago. There are several centers that do transplants at lower MELD scores. Pittsburgh would be a good place to also be listed at, most centers will allow you to be list in other areas. Being on the waiting list is not easy, and is very stressful! I wish you much luck in doing a living transplant. My prayers go out to you and your dad.
MissLissa, I can relate to what you are feeling right now, My husband was on antibiotics and then off, then he started having Cardiac problems, put inactive on the list, then he was reactivated. I started looking into other Transplant clinics, feeling very desperate and stressed out. We got the call about a week and a half after he was reactivated. My husbands MELD score was constantly changing at times it was 23, it would drop, in fact he was transplanted with a MELD score of 15. The Transplant clinic we are going to is only 2 years old, the surgeon is very experienced and has done more than 800 transplants, he is very well documented. The waiting list at the present time has 11, my husband was listed for less than a year, he was listed in June 2006. I know the confusion and frustration, but it does sound like he is very close to getting the call for a cadaver. I do know alot of the clinics are cautious about doing related living donor transplants. The best thing to do is to try to keep him as stable as possible, (not an easy job). Try going to www.unos.org then go to optn, then organ data source, you can find any center in there, I had to play with it, but got information about the different centers and what MELDS they were transplanting at. Good Luck and prayers!!!
apple4u, Welcome to HW, sorry you are having to go through this also! If you need any thing just let me know. HW is a wonderful place for support and information. If I can be of any help just let me know. Prayers and positive thoughts.
My husband, Lee, is on the transplant list at the University of Pennsylvania. They have discussed with us accepting a "non-perfect" liver. Has anyone discussed that with your family? They told us that at a MELD score of 25 is when we can expect to be vigerously looking for a cadivar liver, and lower for a "non-perfect" one. I understand all the frustrations you are going through, as this disease has completely changed my husbands personality. The encephalophy is getting harder and harder to control. I hate hearing the words, "he's not sick enough for a transplant". COME LIVE WITH HIM!!! If you have any questions to ask me I would be happy to help.
I'm very slowly moving DH out of his inertia about this and I think he's ready to consider Mayo. We're concerned about housing; does Jacksonville have short term housing and what areas should we absolutely avoid? Are there lots of places for rent at the beach?(Might as well have SOME fun while we wait!)
I know Mayo has some short term housing on site; Hep93, do you know anything about it?
Hoping and praying you hear something from Pittsburgh today, Lissa. Your story is exactly why I don't want to wait for DH to get even sicker--there's so much that can go wrong with this whole scenario, and we're so at the mercy of the transplant centers. No one could ever say you haven't moved heaven and earth to make this happen for your dad, though.
“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."