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.

@melody12

I wanted to join in the liver transplant discussion group, however I see the post are dated from a couple of years back. Is this still active? I hop so.

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@melody12, Welcome to the liver transplant support group. This discussion has been going on for a long time, and many liver transplant patients have dropped in, and dropped out as they travel along their transplant journeys. We are always here to engage in conversation and to share our experiences to help others.

What brings you to the liver transplant support group?

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Disregard, last post. See it is still active. I am 1 yr. post Liver Transplant and now facing another related surgery. It is called a Hernia, for the lack of a better word. I have to have a complete Abdominal Wall Reconstruction. For months my pain was chalked up to nerve damage. Many tests were done and repeated to no avail. Now I look like I am pregnant, but only on my right side. Due to pain and lack of any exercise, I have gained roughly 40 lbs. Now, I have to lose 30lbs for surgery. Hernia Dr., said he can’t perform surgery and referred me to Trauma Surgeon who will operate with a plastic surgeon. Long operation and recovery ahead. Posting to alert others of symptoms and also looking for feedback.

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@rosemarya

@jennkat73, I want to say Welcome to Mayo Clinic Connect. I am a liver and kidney transplant recipient, and although my transplant was in 2009, I can remember the emotions and fears as if it was yesterday.
On Connect, we are patients and who have a desire to share our own experiences to support others. We are here to answer questions and to listen to concerns and ease fears. And best of all Mayo Connect is available 24/7 and germ free!

I hope that your evaluation is going smoothly, although it is a lengthy exhausting process. What is a concern or question that is on your mind as you undergo your tests?

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the concern is that I am trying to keep my "levels" as normal as possible so that I do not need to keep repeating tests. (Potassium) is a big one. I am finally eating (smoothies w/protein) some chicken when I can handle it. My concern is the absorption staying in my system.

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@melody12

Disregard, last post. See it is still active. I am 1 yr. post Liver Transplant and now facing another related surgery. It is called a Hernia, for the lack of a better word. I have to have a complete Abdominal Wall Reconstruction. For months my pain was chalked up to nerve damage. Many tests were done and repeated to no avail. Now I look like I am pregnant, but only on my right side. Due to pain and lack of any exercise, I have gained roughly 40 lbs. Now, I have to lose 30lbs for surgery. Hernia Dr., said he can’t perform surgery and referred me to Trauma Surgeon who will operate with a plastic surgeon. Long operation and recovery ahead. Posting to alert others of symptoms and also looking for feedback.

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@melody12, I had a hernia procedure after my 1st year after i developed infection and sepsis due to a kink my bile duct connection. After the infection was controlled, I had a simpler surgery than you are facing. I want to tag the following members to meet you and to help you as you prepare for your surgery.
@terry14, @jackie421blfdgurl, @cehunt57, @btwest6, @rfriend50

Here is a discussion where you can learn more about their experiences.
https://connect.mayoclinic.org/discussion/incisional-hernia/

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@jennkat73

the concern is that I am trying to keep my "levels" as normal as possible so that I do not need to keep repeating tests. (Potassium) is a big one. I am finally eating (smoothies w/protein) some chicken when I can handle it. My concern is the absorption staying in my system.

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@jennkat73, It has only been a couple of weeks, but I want to check in with you. How are you progressing with your effort to keep your "levels" as normal as possible? Did you finish your evaluation for transplant?

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My husband had a liver transplant in May so we are very new, learning of post transplant life is so helpful. He's just recently developed a nausea problem seemingly initially related to low magnesium. Also has post transplant ascites wearing a drain but it does seem to be slowly reducing.

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@alliepete

My husband had a liver transplant in May so we are very new, learning of post transplant life is so helpful. He's just recently developed a nausea problem seemingly initially related to low magnesium. Also has post transplant ascites wearing a drain but it does seem to be slowly reducing.

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Hi @alliepete, allow me to welcome you. Sorry for the delay. You'll want to also meet @rosemarya @contentandwell @gaylea1 and others here.

Has your husband's nausea improved with increasingly his magnesium levels?

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@colleenyoung

Hi @alliepete, allow me to welcome you. Sorry for the delay. You'll want to also meet @rosemarya @contentandwell @gaylea1 and others here.

Has your husband's nausea improved with increasingly his magnesium levels?

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It seems to be a Cellcept issue maybe, but he used one compazine suppository last Thursday and it was miraculous...he also started a zofran regimen three times a day before meals, and he's doing great. Has gained 4 pounds. Fingers crossed! They're going to change out the cellcept to something with less stomach side effects. Thank you.

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@alliepete

It seems to be a Cellcept issue maybe, but he used one compazine suppository last Thursday and it was miraculous...he also started a zofran regimen three times a day before meals, and he's doing great. Has gained 4 pounds. Fingers crossed! They're going to change out the cellcept to something with less stomach side effects. Thank you.

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@alliepete I'm happy to hear that your husband's nausea is getting better with zofran. I never had that problem but I have heard a lot of people do lose their appetites. I do know that I was not on Cellcept for too long. Discontinuing that was the first drug change they made I think. Now I am just on sirolimus - tacrolimus was causing potential kidney problems. I will be five years post next week.
JK

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@contentandwell

@alliepete I'm happy to hear that your husband's nausea is getting better with zofran. I never had that problem but I have heard a lot of people do lose their appetites. I do know that I was not on Cellcept for too long. Discontinuing that was the first drug change they made I think. Now I am just on sirolimus - tacrolimus was causing potential kidney problems. I will be five years post next week.
JK

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My husband's main drug is Everolimus for antirejection. Have ongoing ascites issue but seems to be slowing. We're still in the 6 month post surgery acute period so patience must be practiced. Quite a journey!

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