What is the QUALITY of life after a liver transplant? What is quantity of life?

Merry Christmas!🎄🎁

AlvaDeer,
Thsnk you. I know it would be more pain if he lingers. He is just a shell of the man I married.

it’s frustrating for him not to be the person he was before.
our daughter and I are in agreement. . Keep him happy, we’ll be at least try.

Thank you everyone for your support. Hospice says to sit and breathe. I do nothing now; just follow him to make sure he doesn’t walk out front door.. he talks a bit gibberish. I try to stay agreeable.. this is definitely work..It looks like this will be our last Xmas.. hopefully not… I’ll keep ubposredg

I’m sorry it went down like this, HUGS

So sorry. I have a stubborn one too, TG he has nothing serious. I have gotten to the point that I tell him what I think, and then I don't nag. It has to be his decision.

I'm so sorry to hear this update Mayday. My heart hurts for what you're both going through. Sending you a big hug and a prayer for strength right now.

Mayday, I'm so sorry to hear this news. (((Hugs))) and kudos to you for your love and patience.

MAYDAY, ((((hugs)))).

My DH is on hospice. He fell and hit his head. I wasn’t home. He didn’t tell me for a day or so, then said it was nothing to worry about.
Had another tapping of fluids. We were at hospital. That would’ve been a good time to confess about his bumping the head on a counter. Nope. He waited until we got home to say his head still hurts. He fights me every time I say we should go to the doctor or ER….
After that I point blank asked him again if he wants a transplant. He answered :
I haven’t decided yet. When I do, I’ll let you know.
Well, his body decided for him…. :(
Our daughter agreed. He is not the best patient and is so stubborn. She reminded me the first time at hospital, he wasn’t going to let the doctor tell us what he found. We were out of the room when dr came back in with the results..
I can imagine the transplant people getting upset if he refused to go to an appointment.. I don’t think we would pass the psychological appointment. And after the 2nd physical therapy appointment at home, he didn’t want to do it anymore.. seriously? 2 appointments and you’re done?
I’m still in denial about this whole thing… then I burst into tears. He asks me why this is happening to him.? What did he do to deserve this? He won’t talk about death straight out. It’s hard for me to bring it up… he knows.
i am so tired. That poor man is too..
We just got on hospice Monday. Today is Sunday, I think. Last night I gave him morphine for the first time. Shallow breathing.. first night in 2 weeks he slept the whole night through.. he’s still out..

You need to prepare yourself that he won’t be approved.

You have to be a type A go getter type person to go through with a transplant. You have to be highly motivated and have the drive to succeed.

I know someone in her 50s who received one last year at the Mayo Clinic in Arizona. She was on the list for awhile and didn't expect that she would be called so soon because there were others ahead of her on the list. But the call came out of the blue one day. She had her mom stay with her while she was recovering from the surgery, I think they were in Arizona for six weeks so that she could be monitored for potential rejection. She and her new liver are doing fine. Of course she is on immunosuppressants. But she is back at work and lives a normal life.

I hope your husband has as good an outcome. Wish you all the best.

My dad had liver cancer. He was avud about healthy life, jogged 5 miles a day. We don’t know why or how he got it, but he did..
thats what I noticed, the common visual issue, abdominal swelling.. with dad, the more you tap, the faster it fills back up.. the progression of his cancer. He lived 13 months from time he was diagnosed. Mom was many years of ALZ. I have both issues on both sides of my gene pool.
We are just in the first stage of this process… fun times …

i got my agenda calendar. One thing off my list. Now I need to write all our appointments in it..
Gotta get organized..
and he is understanding that things need to be done. Cooperation is one of the main keys to this adventure.
another thing to anyone who is reading this.. I told this to my neighbors and friends..,
Get your living trusts done. Life happens. The woman standing in line behind me was kind enough to help me decide what calendar I needed. I just happened to ask the right person for her opinion. She’s taking care of her mom, MIL, and her son who was badly injured 8 years ago. He was on his motorcycle when a drunk driver hit him..no time to react..
She has her main book and 3 smaller ones, one for each LO she is caring for..
things happen unexpectedly..
anyway.. take this to heart.. if you don’t have a living trust, get one..
at least out your power of attorney in the works. You can download free forms from your state.gov. And my state only requires 2 witnesses seeing you sign it.it didn’t to be notarized.. so, that was the first thing we did. We listed 3 people in case someone didn’t want to take that title..

Do not expect a liver in 8 months. My neighbor aged out at 75 and she was on the list for a long time. Your husbands doctors need to be blunt with him. He should be told the worst scenario. He also needs to be told its all up to him. He is going to need to do the work and do what he is told. You are only there for support.

The mid 60s is not too old, the recovery period is months to a year, he will be on immunosuppressants forever.

SP, yup. I’m going to modify the walker. Tennis balls seem to be the answer to make it slide easier.
Fawnby’s story about her friend is a concern for me too. I don’t need him to fall..
this guy has been my rock. Been through thick n thin..
so, it’s my turn to take care of him as far as he will let me. I I suppose he wants control of this scenario.. but we need to work together.. I need to make him understand that.
hence this insurance is putting us through different consultations.. I suppose this is normal procedure; to see if we are up to it and will follow strict guidelines. We absolutely cannot miss an appointment, unless it’s due to him not feeling well.Here comes the trouble, I am not thst organized.. gotta check myself and get a calander, something I csn write in notes. I’m too old school..

Midkid , this is about you too, the both of you and your family and friends. Maybe rules of changed since your hubby had a transplant, because I need to prove I have backup. Maybe after all these years people and transplant doctors are realizing that this does take a toll on the caregivers.
Yes, if you are up to telling your flip side of the scenario. You do count and your kids and family n friends…
I’m understanding this is a huge toll on everyone..

Sounds like your SO getting a liver transplant is going to make your life a living hell based on his personality and how you basically do everything for him. Isn't he the one who needs a walker but insists that you be his walker? If he can't even do for himself a little bit he has no business extending his life with a liver transplant.

Well, I’m waiting for the first step to clear, if we get the financial okay from the insurance, then we can move forward with the other consultations. He dies sleep a lot, and pints his finger for me to go get and bring back, etc. he is not a thank you person either. Although I do tell him he is welcome.
he accuses me of sleeping too much as he sleeps or lays around from couch to bed.
He grumbles if I try to restrict his fluid intake . Drs said he can eat whatever he wants.. well, who am I to argue? If I do I hear complaining. I get him on the scale every other day or so.. he grumbles about that. Then I ask him if he is sure he wants a transplant..
and my clinic says it is a necessity that I have another caretaker living here, else the deal is over.. if I don’t have backup, he’s not getting a transplant.

My DH had a liver transplant due to Primary Liver Cancer caused by 40 yrs with HepC.

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.)

No drinking and there will be a lifetime of anti rejection meds. He will still need biopsies at intervals. Sometimes with the transplant, there is an increased risk of cancer swapping one chronic disease to another. The wait list varies depending on number of antibodies to match. Also how close he is to a transplant center. He will need to exercise in preparation and stay strong. If he gets worse and becomes bedridden, he may come off the wait list.
The transplant itself will immediately remove toxins so that he will become more alert and feel better.

My friend’s husband was in his 70s when he had a liver transplant. He had ruined his liver from drinking alcohol but was sober when he had the transplant. He never felt really well after the transplant but lived for many years.

His personality changes were hard on the marriage. He wasn’t reasonable about his abilities and refused to use his cane, walker, etc. He had many falls. Caregiving was hard on her. She couldn’t get him up by herself and he fell head first into the bathtub once and couldn’t get out. She was out running a short errand and was horrified that he’d been stuck there for 15 minutes or so.

He wished he’d never had the transplant because he was never himself afterward. He lived many years, the last of them in a VA hospital.

in my opinion neither spouse had any real quality of life after his transplant.

my DOD had hep c fr many years unchecked, undiagnosed, and finally in late 1970's there was clear diagnosis, he went on until the late 80's unmedicated, finally in like 89 90 something he started drugs that were relatively ineffective
fast forward mid 90's coma, liver not functioning.
miracle transplant no problems
lived 10 years more
succumbed to cancer that started on top of his head
liver only gave out after extensive extensive treatment
he was a firecracker until his last few months

Phil Lesh, the bass guitarist for the Grateful Dead underwent successful liver transplant surgery in 1998. He was 62 at the time.

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

A friends dad got one in his 70s. He had heart issues and the surgery plus medication regimen did give him some years, but they were not happy ones.

My dh had a liver transplant at the Mayo Clinic on April 29, 2022. We were there for 7 weeks, he had a few complications and 1 additional surgery. He was on the waiting list for a bit over a year, his cancer was ablated in the meantime. Once we arrived at Mayo, he waited 5 days for a donor liver. Recovery was about 2 months, if that, once we got home, with me being his primary caregiver.

His life is much better now. He's able to do whatever he wants, no weight restrictions. His one year anniversary tests were great. He was on a ton of meds at first which are down to about 5 a day, including anti rejection drugs he'll take for life. The docs told him he'll die from something one day, but it won't be his liver ( he also had NASH, non alcoholic cirrhosis). People can and do live 20 or more years after a liver transplant.

I, along with cxmoody, documented our entire journey here on A.C. if you'd like to read it.

https://www.agingcare.com/discussions/lealonnie-and-hubby-liver-transplant-journey-474495.htm

Apparently it was NOT the plastic tine from the plastic fork.

now I’m just listening to

Stone keeps on rolling

Robin Trower

great song.