Most importantly, what is the quality of life after the patient has this liver transplant? I know there is a recovery period. Several parts to this question.
Regarding the patient: From just getting on the list to every step of getting transplant, operation, comfort discomfort, and the obstacle course in which patient and caretaker have to navigate.
The quantity of time of patient. How long does one live with a liver transplant. I know age, mid 60’s.
Not sure what category to place this under.
He is now 83 years old, and still tours with his own band, as well as a guest in several others.
He is a vocal advocate for organ donation. Each of his concerts features a "donor rap" in which he tells the audience his story of his liver transplant, and the need for more organ donors.
"It's as simple as saying to someone you love, hey, if something ever happens to me, I want to be an organ donor." - Phil Lesh
He was always told he'd die WITH the HepC, not because of it. Oops---even though he never drank and doesn't drink, his liver still went south on him.
Through the terrible news that he had 6 months to live, at the age of 54---he worked the system and was placed on the transplant waiting list. (That story, in and of itself, is a whole book worth of stories)
I won't say it wasn't hard on all of us, because it most assuredly WAS.
He received his life saving gift on 9/11/2006. 8 months after he was listed.
I won't say the recovery was easy. They left a sponge in him and it caused a massive infection. He made it through that.
Healing took 4 months, then he was back to work FT, traveling and working 60 hr weeks. He did one 84 week TX of a drug called Interferon to slow down the Hepc, and it did buy him some time.
Then the ultimate miracle--Harvoni. 12 weeks on this, zero side effects and he was cured of the HepC.
He doesn't take particularly good care of himself, he's type II diabetic and still eats and does exactly as he pleases.
I took care of him every single solitary day pre and post transplant/sepsis. EVERY. SINGLE. DAY. It was brutal. He was never grateful--lots of pain and so much prednisone---we came out of it less close than before. In some ways, something that happened during that time altered how he saw the world and he changed into a very different animal.
After he was cleared to go back to work, I had a nervous breakdown. But this isn't about me.
He's out today, finishing up his 2nd 18 holes of golf. He complains a LOT about aches and pains, but nothing about his liver. He got an excellent match and he's on an almost negligible dose of anti rejection meds. Has a biopsy once a year and so far, things are fine. The liver is healthy.
He worked until he was 71 and only retired b/c he has to help his sibs with their mother.
I would say his QUALITY of life is great. He's lived to see 12 more grandchildren born, hiked the Tetons, hiked the red rock country of S Utah. Traveled extensively. I look on his transplant as nothing short as a gift from God. He isn't 'thankful' like I am--but I am more tender soul, I guess.
IDK what kind of lifespan he might have now--I believe he could go on well into his 80's. But we were told 15-20 years and that was WITH the HCV.
A dear friend of ours had a transplant in the 80's and lived for 37 more years. He was a competitive tennis player and went back to win many tournaments after his transplant.
It's not fun and looking back, I should have had nursing care coming in to take care of him until he was up. I've never been the same since his transplant, b/c our relationship changed so much.
This is normal, but it isn't/wasn't fun. I miss the guy I married and I wish he could have shown some gratitude for all I did for him, but he's not wired that way.
If you are needing a LT--be sure you follow ALL protocols. If you drink even ONE drink, that can be seen in your blood up to 2 weeks later. (MY SIL is a transplant Dr.--he can't believe how many pre-transplant patients try to tell him tales of how 'somebody' spiked their drinks, b/c they would NEVER drink.)
I hope your husband has as good an outcome. Wish you all the best.
now I’m just listening to
Stone keeps on rolling
Robin Trower
great song.
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