This and That and Talk - My Transplant

Many of you have gotten to know @rosemarya in the Connect Transplants group. Today she is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post. The post includes video of @rosemarya talking about how she went online looking for someone with her disease or even a transplant due to its progression, and found Connect. She shares that she has the privilege of getting to be with members, walking with them during difficult times in their health journeys. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

hi, I did my liver transplant last year. I noticed that my stomach became big and heavy. I cant relax on my seat and making me worry.

@almula, Welcome to Connect. I am happy that you have received your liver transplant. I am a transplant recipient, and I have not had a similar experience with stomach swelling or inability to sit and relax. I can understand your worry.
My first thought is, -Have you spoken to your transplant team about this? They are the ones who can tell you what to do, and if you need to be worried.
When we have an organ transplant any unusual bodily change is something to take seriously. Don't try to self diagnose or avoid contacting them.
Almula, do you think you need immediate care? If you do, don't hesitate. With a transplant, you must be extra careful that it doesn't get serious.

Did this come on slowly, or suddenly? When was the last time you had labs drawn, or saw your doctor? (Things can go wrong between appointments)

Thanks a lot for your response, I do not need urgent care I will meet my doctor next month.

Almula, I think that is a good plan. I hope they will be able to tell you what is causing the swelling and determine a solution for it.

I am many miles away from my transpant center. When I have any unusual symptoms that concern me between appointments, I have called my local doctor's office and asked the receptionist (or nurse) to relay my symptoms to the doctor. (Depending on his response, I might also contact my transplant coordinator) My phone call has often resulted in having labs drawn.

I have located an older discussion about Stomach swelling. Why don't you post your question there, and it will become visible to more people as a trending post.
https://connect.mayoclinic.org/discussion/stomach-swelling-after-liver-transplant-four-years-ago/

Hello @almula
While I have never had a transplant myself, I very much agree with @rosemarya, that it would be a very good idea to call your doctor's office with the information about the swelling. Just to keep your doctor "in-the-know" is important whenever you have any post-transplant problems.
Will you consider calling your doctor's office?

Teresa, I like your choice of words, Just to keep your doctor "in-the-know".

Sometimes I am hesitant to contact my doctor because I don't want to bother him. And fortunately for me, my husband tells me to. "Call, its better safe than sorry." I grit my teeth and, knowing that he is right, I will place the call. There have been occasions when I didn't need intervention; there have been times when intervention was urgent.

I have also learned that a 24 hour - My Nurse on Call - hotline is not qualified to address for my post transplant specialized needs.

Has anyone else had a similar experience?

@almula I am also a liver transplant recipient. @rosemarya gave you some good advice.
Personally, I would call my transplant team just to make sure that nothing is amiss. I would find it reassuring for them to tell me that there was no need for immediate attention.
I will be looking forward to hearing what they tell you, either now if you call them, or when you see them next month.
JK

Hi Im a 13 month post Heart tansplant receipent. Im here to say hi and maybe be of help to others. I also had a long period prior to my new heart of arritmyas and pacemaker shocks. so please

@danab welcome to Connect, Dana. It’s always good to hear from another experienced post-transplant person willing to respond to questions others have, either pre-transplant or early in their post-transplant journey. I am over two years post liver transplant and grateful every day to the person who chose to be a donor, and for how fortunate we are to live in a time when this is possible.
JK