1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

vera77 | @vera77 | Oct 20, 2023
In reply to @colleenyoung "Hi @vera77, you are asking very good questions that will need careful consideration for doing a..." + (show)
@colleenyoung

Hi @vera77, you are asking very good questions that will need careful consideration for doing a transplant in US when you live elsewhere. There is a period of time directly after transplant that you as the caregiver and your husband would need a short-term stay near the clinic where you get the transplant as well as regular follow up appointments.

Mayo Clinic staff have written these blogs that outline a bit more detail about liver transplant at Mayo.

- Liver Transplant at Mayo Clinic https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplant-at-mayo-clinic/
- What to Expect: Post Transplant Care https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

@rosemarya @jerrydrennan @amyintucson @arqui02000 @2ndlvrxplantmom @karen51 @parrot53 @eparker6 and many others can share their first-hand experiences with post liver transplant care and short-term stays.

Are you thinking of applying to Mayo Clinic for transplant?

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Hi, Thank you very much for your reply. We dont know yet which clinic we will apply for transplant. My husband from Michigan n he was having some tests done n small operation on his asofagus in Henry Ford last winter n then we left back. My husband retires after two month, so we will decide by that time where to apply for transplant.
Thank you.

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vera77 | @vera77 | Oct 20, 2023
In reply to @valbob "I don't know what is 'mandatory' but can share our experience. We moved to Arizona from..." + (show)
@valbob

I don't know what is 'mandatory' but can share our experience. We moved to Arizona from California once he was listed. Within 10 days were were blessed with a transplant. Two months after transplant, and a pretty easy recovery, we were told we could go home. He gets weekly blood tests done, which I print out and send to Mayo Clinic, via their patient portal. We returned to Arizona for one day of tests and appointments five months after transplant. There have been a number of zoom video sessions, a ton of messages back and forth and a number of phone calls, some after hours due to continuing bumps in the road to recovery.
Mayo has been there for us whenever we need them. We will be returning to Arizona, for a one year follow-up in January.
We considered transferring his care to a local transplant clinic, something they were willing to do, but decided to stay with Mayo Clinic. It has been a challenge at times with the need to have ultrasounds and low white blood count required injections. We are blessed with a wonderful local dr willing to help with these needs.

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Thank you very much for your reply. I now understood that we will have to stay in USA for some time, so we will plan accordingly.

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manishgang | @manishgang | Oct 21, 2023

Hello folks ,
I had liver transplant almost 6 months back and I was hoping things will get better - though it’s better than before but I always have some or other problem but abdomen heaviness , tightness ( seems some one put stone on it ) . All my reports are stable and I got CT also done due to this pain and nothing came in that . Any one faced this ? Is it related to nerve , medicine side effect, anything else ? What can I do to feel better ?

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2 replies
nrbecerril | @nrbecerril | Oct 21, 2023
In reply to @manishgang "Hello folks , I had liver transplant almost 6 months back and I was hoping things..." + (show)
@manishgang

Hello folks ,
I had liver transplant almost 6 months back and I was hoping things will get better - though it’s better than before but I always have some or other problem but abdomen heaviness , tightness ( seems some one put stone on it ) . All my reports are stable and I got CT also done due to this pain and nothing came in that . Any one faced this ? Is it related to nerve , medicine side effect, anything else ? What can I do to feel better ?

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I dealt with the same abdomen pain. I'm 8 months and the discomfort is passing and now I'm getting electric shocks in my abdomen. My team said it was all normal... the body healing it's self also got a lot of input from this group. I hope this helps you. I did do a lot of massages on daily basis. Used Temu oil. Feel better. Oh and they gave me gabapentin for the discomfort. Worked good for me..

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1 reply
manishgang | @manishgang | Oct 21, 2023
In reply to @nrbecerril "I dealt with the same abdomen pain. I'm 8 months and the discomfort is passing and..." + (show)
@nrbecerril

I dealt with the same abdomen pain. I'm 8 months and the discomfort is passing and now I'm getting electric shocks in my abdomen. My team said it was all normal... the body healing it's self also got a lot of input from this group. I hope this helps you. I did do a lot of massages on daily basis. Used Temu oil. Feel better. Oh and they gave me gabapentin for the discomfort. Worked good for me..

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Thanks @nrbecerril for sharing your story . Makes me feel much better and I also had developed RA pain post surgery but that seems to settle - May be it was due to high Uric acid.
Thanks for sharing and Caring

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 21, 2023
In reply to @manishgang "Hello folks , I had liver transplant almost 6 months back and I was hoping things..." + (show)
@manishgang

Hello folks ,
I had liver transplant almost 6 months back and I was hoping things will get better - though it’s better than before but I always have some or other problem but abdomen heaviness , tightness ( seems some one put stone on it ) . All my reports are stable and I got CT also done due to this pain and nothing came in that . Any one faced this ? Is it related to nerve , medicine side effect, anything else ? What can I do to feel better ?

Jump to this post

@manishgang, Congratulations on your transplant 6 months ago. And also, please accept my sincere Welcome to Connect.
It is great to hear that you reports are all stable that show that your liver is happy and settling into its new home. It is also great to hear that your CT showed nothing that could be the cause of your abdominal tightness and discomfort. I don't remember too much about my abdominal discomfort except for tightness, the weird (un)feel of the numbness, and the discomfort of constricting clothing. I did feel abdominal discomfort, but not pain, when I over stretched or exercised. And just now, I remembered that there was discomfort if I stood for too long. My transplant was 14 years ago.

In support of the experiences that have been shared in this discussion, here is another that will that will let you know what others have had to say about how they handled their abdominal discomfort.

- Post Transplant - Core numbness and Weakness:
https://connect.mayoclinic.org/discussion/post-transplant-core-numbness-and-weakness/

@manishgang, Is it possible that you are over-exerting yourself by trying to do too much, too soon? or too often?

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2 replies
manishgang | @manishgang | Oct 21, 2023
In reply to @rosemarya "@manishgang, Congratulations on your transplant 6 months ago. And also, please accept my sincere Welcome to..." + (show)
@rosemarya

@manishgang, Congratulations on your transplant 6 months ago. And also, please accept my sincere Welcome to Connect.
It is great to hear that you reports are all stable that show that your liver is happy and settling into its new home. It is also great to hear that your CT showed nothing that could be the cause of your abdominal tightness and discomfort. I don't remember too much about my abdominal discomfort except for tightness, the weird (un)feel of the numbness, and the discomfort of constricting clothing. I did feel abdominal discomfort, but not pain, when I over stretched or exercised. And just now, I remembered that there was discomfort if I stood for too long. My transplant was 14 years ago.

In support of the experiences that have been shared in this discussion, here is another that will that will let you know what others have had to say about how they handled their abdominal discomfort.

- Post Transplant - Core numbness and Weakness:
https://connect.mayoclinic.org/discussion/post-transplant-core-numbness-and-weakness/

@manishgang, Is it possible that you are over-exerting yourself by trying to do too much, too soon? or too often?

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Hi @rosemary - many thanks for warm welcome . Glad that you connected me to group and felt better that I am not alone and things would get better from here on.

I don’t think I am over stretching my self - I am very careful in what I do . It’s just the skin / muscular pain across the surgical area almost all the time and also feels very heavy and uncomfortable

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1 reply
bogietopar | @bogietopar | Oct 22, 2023
In reply to @manishgang "Hi @rosemary - many thanks for warm welcome . Glad that you connected me to group..." + (show)
@manishgang

Hi @rosemary - many thanks for warm welcome . Glad that you connected me to group and felt better that I am not alone and things would get better from here on.

I don’t think I am over stretching my self - I am very careful in what I do . It’s just the skin / muscular pain across the surgical area almost all the time and also feels very heavy and uncomfortable

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I had something similar and it was an umbilical hernia. Your stomach muscles become weak when the liver is not producing protein to strengthen the muscles. A CT scan will normally show a hernia. Tom

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 22, 2023
In reply to @warrio202105 "Fatigue is common with transplants. Dr. Kenneth Miller at Tufts Medical Center said that it can..." + (show)
@warrio202105

Fatigue is common with transplants. Dr. Kenneth Miller at Tufts Medical Center said that it can go away but it also can last forever. He has several ways to help his patients with fatigue. Google him. I am two years post and I am still suffering from fatigue. I was always very active before my unexpected liver transplant but not anymore I don't go or do anything because being fatigue. I also have narcolepsy, my primary care doctor manages my narcolepsy and I have spoken to him numerous times. He refuses to help me he said that I need to talk to my transplant team. I discussed it with my liver specialist he said that with everything he has to do that he doesn't have the time. I agreed with him I told him that my primary care doctor should be the one that takes care of it. Now I have to find a new primary care doctor but that's okay I really didn't like him. Has anyone got any help for fatigue if so what was it? Thanks

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@warrio202105, you may also wish to join this related discussion:
- What helps with post liver transplant fatigue?
https://connect.mayoclinic.org/discussion/post-liver-transplant-fatigue/

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tinamarie10 | @tinamarie10 | Oct 24, 2023
In reply to @colleenyoung "Hi @tinamarie10, I thought I'd check in. How is your mom doing this week? Are the..." + (show)
@colleenyoung

Hi @tinamarie10, I thought I'd check in. How is your mom doing this week? Are the stomach issues subsiding? What has helped if anything?

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I’m so sorry for just replying. She’s is doing way better mentally. Her stomach still hurts her but not as severe. They also put her on pancreas medication (creaon) to help with her digestion and a better antacid pill. She also went on her first out of town trip since the surgery and it was something she really needed. Thank you so much for checking in and thank you everyone for your suggestions and well wishes.

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