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Post Liver Transplant Recovery: Recipient just doesn't feel well

Posted by lsheerin @lsheerin, Oct 4, 2024

Hi All,
My husband is coming up on his one year "Liverversary". His surgery went very smooth, no complications. He has labs every other week and they are perfect. Ever since the surgery, he just doesn't feel "well". He's tired all the time, he doesn't feel well after he eats, food is not the same. Nothing tastes right, except ice cream. He could sleep all day. He has no interest in going out and doing things. The only anti rejection he takes is Envarsus. I don't know if this is normal, if it will correct itself, or something is wrong? Has anyone else had anything like this?

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gennylou | @gennylou | Dec 16, 2024

Thank you so much for posting this. My husband is 9 months post transplant from Mayo Arizona and has so many of these same issues. I will be reading with interest on everyone's experience, and am so grateful for the input.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 27, 2024
In reply to @gennylou "Thank you so much for posting this. My husband is 9 months post transplant from Mayo..." + (show)
@gennylou

Thank you so much for posting this. My husband is 9 months post transplant from Mayo Arizona and has so many of these same issues. I will be reading with interest on everyone's experience, and am so grateful for the input.

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Hi @gennylou, congratulations on the liver transplant at Mayo AZ. You mention, however, that your husband is facing some issues similar @lsheerin shared about her husband.

Genny, can you share a bit more about what is concerning you? How have things been the past couple of weeks?

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1 reply
gennylou | @gennylou | Jan 2 4:25pm
In reply to @colleenyoung "Hi @gennylou, congratulations on the liver transplant at Mayo AZ. You mention, however, that your husband..." + (show)
@colleenyoung

Hi @gennylou, congratulations on the liver transplant at Mayo AZ. You mention, however, that your husband is facing some issues similar @lsheerin shared about her husband.

Genny, can you share a bit more about what is concerning you? How have things been the past couple of weeks?

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He has many body aches and pains, poor sleep, no appetite (after being a "Foodie"), and not much interest in doing anything. His labs are okay, ever since a bout of acute rejection this summer. To me, it seems like a kind of depression, although he disagrees. I don't know how to help him.
He is on Envarsus XR and Cellcept, along with Eliquis, Entecavir, and Fluconazole (this last for only 3 more months).

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stolson1 | @stolson1 | Apr 19 6:59am

I am six years out and I will say yes I went through somewhat of somedays of depression and food was not the same. I got on a kick of cream cheese salsa and ritz crackers. I had survivor guilt - I wrote a letter to the family soon after my transplant - they replied and I learned what a awesome person she was - a nurse a soon to be grandma they sent me a picture I have it near me. I will say I was tired I went back to work after 7 weeks worked from home for a bit I kinda regret that I think it was too soon. I do a lot of self talk. I think the first year had its challenges ( I had additional surgeries) but 6 years out I am so thankful.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 19 2:16pm
In reply to @stolson1 "I am six years out and I will say yes I went through somewhat of somedays..." + (show)
@stolson1

I am six years out and I will say yes I went through somewhat of somedays of depression and food was not the same. I got on a kick of cream cheese salsa and ritz crackers. I had survivor guilt - I wrote a letter to the family soon after my transplant - they replied and I learned what a awesome person she was - a nurse a soon to be grandma they sent me a picture I have it near me. I will say I was tired I went back to work after 7 weeks worked from home for a bit I kinda regret that I think it was too soon. I do a lot of self talk. I think the first year had its challenges ( I had additional surgeries) but 6 years out I am so thankful.

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@stolson1, It is good to hear about your early post transplant experiences and to know that they are behind you. I agree that the first year can be a tough one with medical surprises,
and adjustmenting to our new life style. You made me laugh when I saw your your cream cheese salsa and ritz crackers! Do you still enjoy that combinatoion? One of my 'kicks' was and still is, cream cheese and ritz crackers (without the salsa).
How do you spend your time, or what do you enjoy doing now that you are 6 years with your transplant?

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2 replies
stolson1 | @stolson1 | Apr 27 5:03am
In reply to @rosemarya "@stolson1, It is good to hear about your early post transplant experiences and to know that..." + (show)
@rosemarya

@stolson1, It is good to hear about your early post transplant experiences and to know that they are behind you. I agree that the first year can be a tough one with medical surprises,
and adjustmenting to our new life style. You made me laugh when I saw your your cream cheese salsa and ritz crackers! Do you still enjoy that combinatoion? One of my 'kicks' was and still is, cream cheese and ritz crackers (without the salsa).
How do you spend your time, or what do you enjoy doing now that you are 6 years with your transplant?

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Oh thanks for your reply- I could not eat that combo for a while but I now enjoy it again. My Mom use to make it and we would call it gunk. I love spending time with my grandchildren - I love Northern Mn - love spending time up there.

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aroyred | @aroyred | May 23 3:56pm
In reply to @rosemarya "@stolson1, It is good to hear about your early post transplant experiences and to know that..." + (show)
@rosemarya

@stolson1, It is good to hear about your early post transplant experiences and to know that they are behind you. I agree that the first year can be a tough one with medical surprises,
and adjustmenting to our new life style. You made me laugh when I saw your your cream cheese salsa and ritz crackers! Do you still enjoy that combinatoion? One of my 'kicks' was and still is, cream cheese and ritz crackers (without the salsa).
How do you spend your time, or what do you enjoy doing now that you are 6 years with your transplant?

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i am good but have had prostrate cancer it is ok now 5 Radiation treatments, also have lung cancer now in Lung so on Chemo now for a few weeks my liver Transplant was in Apr 29th 2019 so I feel blessed to be turning 75 next Month !!!

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nancyraine | @nancyraine | 1 day ago
In reply to @apachanga1 "This is normal. I had the same issue and I loved the ice cream too. What..." + (show)
@apachanga1

This is normal. I had the same issue and I loved the ice cream too.
What I think he’s basically going through, because the anti-rejection drugs, is depression! You can also have anxiety issues.
It also is possible survival guilt.
May need to get into a support group or a psychologist that understands transplant patients. It’s mostly a mind thing.
It’s not impossible to get through this! It’s basically takes a reset of your outlook on life!
What he does have is you and that is huge! I went through everything by myself and to this day, I am alone. Going on 10 years now. So I’ve been through the worst possible need to be subtle with him and let him know he has a new life and he does have a responsibility for the liver that was given to him by a person who is no longer with us. So he does have a responsibility to make the best of that Liver in honor of where it came from.
But it’s only been one year! So be subtle with him comfort him and introduce him to his new life! Having you by his side is a great gift! It’s not an impossible task. Nothing is impossible. There’s no such thing as impossible.
This is a quote from Muhammad Ali!
IMPOSSIBLE IS JUST A BIG WORD THROWN AROUND BY SMALL MEN WHO FIND IT EASIER TO LIVE IN THE WORLD THEY’VE BEEN GIVEN THAN TO EXPLORE THE POWER THEY HAVE TO CHANGE IT. IMPOSSIBLE IS NOT A FACT. IT’S AN OPINION. IMPOSSIBLE IS NOT A DECLARATION. IT’S A DARE. IMPOSSIBLE IS POTENTIAL. IMPOSSIBLE IS TEMPORARY.

IMPOSSIBLE IS NOTHING.

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Wow ten years! How do you feel? How hard was the transplant journey,?I'm currently waiting and I keep going back and forth on if I can go through with it or not. I feel like I won't be the same or will ever be the same . I cry every night and jump when the phone rings with the fear if they have found one or not because I'm afraid of the aftermath.i have searched for survivors someone to talk to.. I just found this group a few days ago at 4 s.m because I couldn't sleep . Please tell me your journey. If you will . I'm looking for hope .help on my decision ygo through with it . I'm 46 been waiting 9 years my meld score is 8 but they called the other day with a liver and I missed the call! I'm currently waiting to see if they will reinlist me but I'm still so nervous.

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1 reply
kim1965 | @kim1965 | 1 day ago
In reply to @nancyraine "Wow ten years! How do you feel? How hard was the transplant journey,?I'm currently waiting and..." + (show)
@nancyraine

Wow ten years! How do you feel? How hard was the transplant journey,?I'm currently waiting and I keep going back and forth on if I can go through with it or not. I feel like I won't be the same or will ever be the same . I cry every night and jump when the phone rings with the fear if they have found one or not because I'm afraid of the aftermath.i have searched for survivors someone to talk to.. I just found this group a few days ago at 4 s.m because I couldn't sleep . Please tell me your journey. If you will . I'm looking for hope .help on my decision ygo through with it . I'm 46 been waiting 9 years my meld score is 8 but they called the other day with a liver and I missed the call! I'm currently waiting to see if they will reinlist me but I'm still so nervous.

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@nancyraine, my wife got the call January 9th of this year, after a very short wait. So she didn't experience the difficult waiting period that you have. She has NET, and after chemo, surgery, PRRT, and Lanreotide/Octretide injections, our team recommended the liver transplant plan as our best course of extending her life as long as we can. After 2 different second opinions, she decided to take the plunge on getting a transplant. Keep in mind every transplant is different, some go smoothly, but ours has been anything but, but you have to keep in mind, it is a long recovery as I have learned from our doctors/team and research I have found. There is months 0-3 months, 4-6 months, and so forth. She only had NET's left in her liver, so we choosed to give her the longest possible life with the transplant. We will get through it, you will also. We got this and you will too!

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