This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

@almula

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.

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@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

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@hopeful33250

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?

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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?

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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?

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@almula

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

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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/

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

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@almula

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.

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@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)

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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.

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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/

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@gaylea1

@ contentandwell @rosemarya @jeanne5009 My direct team consists of my transplant hepatologists no other docters per se. I was on the transplant floor but was bumped to general surgery floor. I have been very concerned about this floor. I share a room with an older gentleman who has no control of his bowels and regularly soils his bed and himself. My CT Scans and ultra sounds show no signs of stones or blockages just narrowing. I talk to my doctors regularly and they are not sure why this is happening. My nurses are A One and we discuss each and every medication I take. I have a history of depression and have been trying so hard to keep positive.

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I did not know that hospitals put male and female patints in same room for prolonged care/trearment. Your hospital must be really crowded. I hope that your situation can soon be ammended.
When I have needed hospital or overnight observation locally, I am also uncomfortable about being on the nontransplant floors. Happy to hear that you have established a good relationship with your nurses. It is also reassuring to hear that your doctors are involvd and that they are communicating with you. I know that is frustrating when there is a 'unknown' factor, especially when feeling so poorly.

Your inner strength has gotten you this far, and I feel every confidence that it will continue to do so.
I found great comfort and courage by speaking with the hospital chaplain. Fortunately, I had a good one on my floor. I don't know how you feel about that, but might be worth a try.

Is there a window where that you can look out? I had a window in my room, and asked the nurses to keep my shades open day and night so I could look outside. Sometimes I would sit at a window in the hall and just absorb a tiny bit of 'ordinary' life...and dream of when I could rejoin it.

I send prayers for you and for your medical team. I pray for a diagnosis and a satisfactory treatment.

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@gaylea1 So sorry to hear of your setback. Like the others have commented, hopefully your transplant team can assist in moving you to another and better-suited room for you. Last thing you need is more stress and exposure to things that could retard healing. We are here for you, and support you.
Ginger

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