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.

@joanaiken

I trust Mayo. They have been in charge of my care since 2008 and I am still here after 2 liver transplants and awaiting a kidney. Best wishes !

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I am so glad to hear you have had such great care! That says a lot for Mayo! Believe me, it’s not that way everywhere. I will continue to pray for your care and success!

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@contentandwell

@benlam11 Thank goodness you were transferred to a good transplant center. Being misdiagnosed is so difficult. My symptoms should have led to a diagnosis of cirrhosis so easily but they did not. Thank God the neurologist added it all up.

@beckyy39 MELD 25 really is not that high overall. You can of course get a type O liver also. I was told that was an advantage.

@rosemarya Ahh, distance from donor (she was in Cambridge, right next door to Boston where I was) and my time on the list both probably helped me.
JK

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May I ask what you were initially diagnosed with?
Karen

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@rosemarya

@khh, Healthy life style - stay active, eat healthy foods, abstain from alcohol, avoid over-the-counter medicines and supplements, stay updated on routine medical prevention, stay up to date on vaccines, are a few that come to mind. Most important is to follow doctors advice develop an open communication with a doctor whom you trust.

You are asking some terrific questions! And you are so right that there are a lot of 'us' out here! We stick together, and we are here for you and for each other.

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Thank you for the reply. I have been following every letter of the law, I just don’t have an assigned physician. I do have a question that I have received a consistent response to. Regarding the shingles vaccine ( esp. since it is live I think) , what has been the recommendation? Also know Thai have had shingles several times already. Should I get the vaccine? If I’m no 60, do I get the pneumovax vaccine?

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I had all my vaccines...including the live ones...done before my transplant and I did not encounter any issues. However, keep in mind that everyone must follow their Dr.'s orders.

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There inlies part of my problem. I have not been assigned to a doc here and I’ve been doing all the right rtbings for 3 yrs based on my GI (only) doc, my family doc and what I may know along with an NP. So I don’t have a liver doc.

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Hello. My name is Brianna. I am 25 years old and awaiting a liver transplant. I was wondering how long it takes to be able to walk again after the surgery and also how long it takes for the ascites to go away so I stop looking pregnant and feeling the pressure on my lungs.

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@khh

I am A+ and I think that’s pretty common. I wouldn’t think that would be a huge deterrent in my case. What is your experience with this?
Karen

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@tjgisewhite Hi, My transplant was a Heart but I'm an A+ and i got my heart quick so i think maybe that was an advantage in my case.

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@danab

@tjgisewhite Hi, My transplant was a Heart but I'm an A+ and i got my heart quick so i think maybe that was an advantage in my case.

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Hi and thank you for your reply I am very happy that your transplant went very well however my blood type is O negative and I’m looking for a liver transplant a donor if you can please share this I would appreciate it thank you

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@brianna

Hello. My name is Brianna. I am 25 years old and awaiting a liver transplant. I was wondering how long it takes to be able to walk again after the surgery and also how long it takes for the ascites to go away so I stop looking pregnant and feeling the pressure on my lungs.

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Hi, @brianna. Welcome to Connect. I am happy that you have joined us. This is a great question, and I will share my experience with ascites, as long as you understand that everyone of us is different in how our body acts with liver disease.
Have you had a paracenthesis? It is a procedure that is administered to drain the excess fluid that collects. I needed one around every 10 days and a good volume of fluid was drained each time, and my "pregnant" body was normal again for a couple days.
As for walking, I have always been a walker and a casual hiker. I could barely walk across the room pretransplant, because it left me breathless. After transplant, I was able to slowly begin walking to build up the wasted muscles and my endurance. I transplanted in the month of April, 2009 and in October 2009, I was given the approval by my transplant team to hike again. My husband and I went on some hikes in the Great Smokey Mountains.
Brianna, are currently on the transplant list and waiting of an organ? How can I help you as you move forward?

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@brianna in reference to asking how soon you can walk after your liver transplant, I was up and walking within 8hrs. after my transplant. Everyone is different and recover at a different rate of progress.

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