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.

@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?

Jump to this post

hello ya all My 3 yr anniversary was last week for my liver transplant. 6 months after surgery I had incisional hernia surgery. Well nowI have another hernia sort of in middle of upper stomach..I was feeling weird after I ate the area was tender and just hurt. I saw on a web site all the foods I need to stay away from...I had
so much surgery in my stomach I was wondering if getting all these hernias is common? thanks and have a great day ya all...

REPLY
@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?

Jump to this post

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.

REPLY
@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

Jump to this post

@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/

REPLY
@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

Jump to this post

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

REPLY
@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?

Jump to this post

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

REPLY
@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?

REPLY
@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..

Jump to this post

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

REPLY
@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

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..

REPLY

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 ?

REPLY
@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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.