Transplant

Has anybody had experience with the transplant process?  It's so involved and puts my family through such ups and downs.  My sister's only child needs a liver transplant and we are all in a daze with all the info the medical community has given us.  Can somebody break it down into everyday life terms?  Then I could help my sister and nephew understand better maybe.  Thanks, hopiangel

[mikesimon]

I thought I'd considered everything around this issue but your question raises something that has never crossed my mind. Frankly I don't know. It seems highly improbable that these circunstances would eventuate but it is certainly possible. Maybe you could try chesking with UNOS. Keep in mind that if the donor was not nearby logistical problems may arise with procurring, preserving and transporting the organ. And also UNOS distributes regionally initially and then if there is no need in the region where the center located other regions may get the opportunity to procure the organ. This happened with me as the liver I got was from Michigan and I live near Pittsburgh. The procurement alone cost $40,000. The younger the recipient the better the prognosis, all other factors being equal. A lot depends on the underlying disease, of course, and the health of the patient. But with the MELD score almost everyone who gets a liver these days is pretty sick unless there is a suspicion of liver cancer which changes the rules somewhat. I wish I could be more help to you. If you have any other questions please post them here and I'll answer as soon as I can. Good luck. Mike

[mikesimon]

There is so much I could say that I don't know where to start. Why don't you try to specify what is puzzling to you and I'll try to help. It is a huge thing to get your mind around so I'm not surprised that you would have questions. I'll be here most of today. Mike

[hopiangel]

Hi, glad to know somebody understands that "too big to get your mind around" feeling about this.  I want to know if it is possible for another family member or anybody to pre designate that if they are killed accidently or die, that their liver can go directly to my nephew if the doctors deem he is ready for the operation.  Do you know?  I can't do this for him, or my husband because we had the Hep C.  But other family members also have his blood type and could probably be suitable.  I just want really to know if people can specifically donate organs upon death to whom they want them to go to.  Thanks for your help and I hope this finds you in better health.  By the way my nephew is 35, is that relevant to any good prognosis?  I really appreciate your concern.   Irma (hopiangel)

[jonihs]

Hopi Mikesimon had a liver transplant. I'm sure he'll be along to help you but he doesn't come here everyday, so be patient and keep checking back. My prayer are w/ you. Joni

[hopiangel]

Thanks, that helped.  My nephew does not have liver cancer and has a blood disease that is rare to younger people.  It lead to his blood being so thick it could barely get in and out of the liver.  Consequently, before he was really aware of it, he was so sick he couldn't believe it. He has a pint of blood just about every week taken to keep the blood level down.  His blood is like goo.  He swelled up like you wouldn't believe and as he put it, he was so uncomfortable in his own skin from the physical standpoint.  Emotionally, he is hanging in there.  They considered a shunt, but it was too risky and they chose to place him on the transplant list and maintain him on diuretics and other drugs, which he regulates so as not to blow out his kidneys.  This explanation is so lacking when compared to the magnitude of this thing.  You know, you see it on TV, a person gets a liver transplant and so on.  But, it seems my nephew, best case scenario, may live longer, but will be in and out of the doctor for pretty much of the rest of his life.  Like I said, you certainly know, you've been there.  I can only know what I see and what my nephew tells me.  I will stay in touch, this is the only place that I had sometimes when I was on Peg-Intron and Rebetron.  I'm so glad you are out there and hope you are doing well.  Type at ya' soon.  Thanks so much, Irma (hopiangel)

[hopiangel]

Thank you so much for your prayers and you have mine. Irma (hopiangel)

[couchpotato]

I only have a minute but is a living donor transplant an option for your nephew? Maybe you could check that out. Best of luck to you and yours.

Mattie