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.

gphetteplace | @gphetteplace | Nov 11, 2023

How long after transplant? I remember there were crazy spikes and dips in a lot of my tests at first, but they settled out pretty quickly. Of course that’s when you’re on the strongest immunosuppression so it made sense to me.

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1 reply
tinamarie10 | @tinamarie10 | Nov 10, 2023

If anyone can tell me after transplant. Did your white blood count go very low and if it did, was it a concern? My moms recent blood test came back and a lot of her blood counts are very low.

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manishgang | @manishgang | Oct 26, 2023

My CT did reveal Hernia but it’s not incisional due to surgery and is not causing the pain . My pain just won’t go away from abdomen and more importantly near and around surgical site - I am not able to walk properly and nothing comes out in any report . Not sure what needs to be done neither nerve medicine helps . I think as long as you know the reason of pain you should be fine .
I am hoping time and some medicine will heal people like us .

Stay happy and stay blessed every one

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footballmum | @footballmum | Oct 25, 2023
In reply to @rosemarya "@jackie421blfdgurl, Happy Happy Happy 3 year transplant anniversary! I hope that you were able to enjoy..." + (show)
@rosemarya

@jackie421blfdgurl, Happy Happy Happy 3 year transplant anniversary! I hope that you were able to enjoy the special day, in spite of the pain and discomfort of your hernia.
I don't know if these are common, but I do suspect that you are not the only one who has to struggle with this kind of repeated problem. I hope someone sees your post in this, the liver transplant support group and can share their experience with you.🤞
Jackie, did you contact your liver transplant team about this? Have you asked them why you are having repeat surgeries?

@footballmum, @janeent, @gaylea1,@bogietopar, @manishgang - Do you have an experience with incisional hernias after your liver transplant?

Jackie, here is another that I want you to share your question about your incisional hernia.
Incisional hernia after transplant: Anyone else?https://connect.mayoclinic.org/discussion/incisional-hernia/
gaylea1 - Do you have an experience with incisional hernias after your liver transplant?

Jackie, here is another that I want you to share your question about your incisional hernia.
Incisional hernia after transplant: Anyone else?https://connect.mayoclinic.org/discussion/incisional-hernia/

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Yes I did. I had my transplant in October 2020, experienced post surgery issues and ended up with 2 more surgeries in the November. I had a golf ball size bulge develope on my right side in April 2021. It developed into a full on tear of my entire surgical line. I had my hernia surgery in March 2022. So far everything has stayed together. Good luck and God bless.

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gaylea1 | @gaylea1 | Oct 25, 2023
In reply to @rosemarya "@jackie421blfdgurl, Happy Happy Happy 3 year transplant anniversary! I hope that you were able to enjoy..." + (show)
@rosemarya

@jackie421blfdgurl, Happy Happy Happy 3 year transplant anniversary! I hope that you were able to enjoy the special day, in spite of the pain and discomfort of your hernia.
I don't know if these are common, but I do suspect that you are not the only one who has to struggle with this kind of repeated problem. I hope someone sees your post in this, the liver transplant support group and can share their experience with you.🤞
Jackie, did you contact your liver transplant team about this? Have you asked them why you are having repeat surgeries?

@footballmum, @janeent, @gaylea1,@bogietopar, @manishgang - Do you have an experience with incisional hernias after your liver transplant?

Jackie, here is another that I want you to share your question about your incisional hernia.
Incisional hernia after transplant: Anyone else?https://connect.mayoclinic.org/discussion/incisional-hernia/
gaylea1 - Do you have an experience with incisional hernias after your liver transplant?

Jackie, here is another that I want you to share your question about your incisional hernia.
Incisional hernia after transplant: Anyone else?https://connect.mayoclinic.org/discussion/incisional-hernia/

Jump to this post

I have had incisional hernias operated on. Two large ones at the right abdomen. I have a small one above my bellybutton that is yet to be addressed. The surgery was successful but I had some complications and was 6 days in hospital. Most people can have the surgery and walk away fine. I'm not one of those. I have had ongoing pain at the surgical site and a year and a half later have been sent to a pain specialist. I have been taking gabapentin but now I have a series of injections for a nerve blocking to reduce the pain. This is just my own experience as I said most people are very successful with the surgery. I have found that many people after transplant have had incisioal hernias and its not uncommon. I hope your journey is successful. 💖

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 25, 2023
In reply to @jackie421blfdgurl "hello ya all My 3 yr anniversary was last week for my liver transplant. 6 months..." + (show)
@jackie421blfdgurl

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...

Jump to this post

@jackie421blfdgurl, Happy Happy Happy 3 year transplant anniversary! I hope that you were able to enjoy the special day, in spite of the pain and discomfort of your hernia.
I don't know if these are common, but I do suspect that you are not the only one who has to struggle with this kind of repeated problem. I hope someone sees your post in this, the liver transplant support group and can share their experience with you.🤞
Jackie, did you contact your liver transplant team about this? Have you asked them why you are having repeat surgeries?

@footballmum, @janeent, @gaylea1,@bogietopar, @manishgang - Do you have an experience with incisional hernias after your liver transplant?

Jackie, here is another that I want you to share your question about your incisional hernia.
Incisional hernia after transplant: Anyone else?https://connect.mayoclinic.org/discussion/incisional-hernia/
gaylea1 - Do you have an experience with incisional hernias after your liver transplant?

Jackie, here is another that I want you to share your question about your incisional hernia.
Incisional hernia after transplant: Anyone else?https://connect.mayoclinic.org/discussion/incisional-hernia/

REPLY
2 replies
jackie421blfdgurl | @jackie421blfdgurl | Oct 25, 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?

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
1 reply
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?

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.

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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

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/

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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

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

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