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.

@arqui02000

rosemary do you know anyone has received a SECOND TRANSPLANT?

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@arqui02000 - Is a second liver transplant in your future?
I want to invite @btg to this conversation. I believe that he has received a 2nd liver transplant.

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@rosemarya

@arqui02000 - Is a second liver transplant in your future?
I want to invite @btg to this conversation. I believe that he has received a 2nd liver transplant.

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Could be the second choice if TIPS is no the choice doctor mentioned ao Interesting to connect with people who has this two choose for now my liver is ok the NADODOL control my PORTAL HYPERTENSION

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This is for transplant patients. I am a liver transplant 2yrs.i take tacrolimys. My Dr. Has me do blood every 3 mos. To ck everything. MRI and CT every 4 mos.- 6mos.sibce I have a new liver and other organs seem fine why can't I have a glass of wine maybe once a week...I don't smith or do drugs ..never been a drinker but do occasionally like a glass of wine or a glass of cold beer...can anyone answer that!

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@jackie421blfdgurl

This is for transplant patients. I am a liver transplant 2yrs.i take tacrolimys. My Dr. Has me do blood every 3 mos. To ck everything. MRI and CT every 4 mos.- 6mos.sibce I have a new liver and other organs seem fine why can't I have a glass of wine maybe once a week...I don't smith or do drugs ..never been a drinker but do occasionally like a glass of wine or a glass of cold beer...can anyone answer that!

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Hi Jackie, The question about alcohol is especially important for us with a liver transplant. Your doctor has said "no" and there is a good reason why, even though your other organs are doing well, and you are having routine labs.
It is unfortunate that many people assume that alcoholism is the reason for all liver diseases. That is not true. My understanding is that alcohol (as well as some over-the- counter meds and supplements) are/can be toxic to the liver which is your body's filtration system.
Your new liver is happy right now, and you want to keep it happy. To do that you have to proactively take care of it by taking your immunosuppressant meds, getting routine labs and tests, and avoiding anything that will put added stress on it like alcohol.
When I was first diagnosed with liver disease 18 years ago, my PCP thought that an occasional beer or glass of wine would be okay. However my GI, said, "No" because, knowing that alcohol was toxic and that my liver was struggling, there was NO safe amount. He said that risk of tipping the scale toward liver failure was just too big of an issue, and that there was no measurement for a 'safe' amount. This message has been repeated by my early transplant team and my current Mayo Team.
For liver patients it is a standard, however with some other organs it is different. I have a liver and a kidney and I have a No Alcohol protocol. In fact, after y 10th anniversary check-up, I asked the attending Kidney Doctor, what I needed to do to live for another 10 years. His reply: 1) Take your medications; 2) Get your routine Labs; 3) No Alcohol.

Here is a good discussion that is filled with ideas:
-Celebrating without alcohol
https://connect.mayoclinic.org/discussion/celebrating-without-alcohol/

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Hi Jackie,
I am 2yrs. LTP have been doing great monthly labs on prograf/myfortic. Over the holiday went into acute rejection, never been so scared, afraid stressed out in my life, I am now back on prednisone “yuk” and increased immuno meds more lab visits and clinic visits possible liver biopsy. All I could think about I am going to loose this gift of life I have been given. Drs. told me well at least u r not drinking he said that their r so many people given a second chance at life and go back to drinking go into liver failure and the Drs. have to get them back to health again. Alcohol is a toxins to our livers especially if your liver disease was not from alcohol.
I to did enjoy a cold beer and a glass of wine but u just have to make a choice b/c u could have-complications my liver disease was non alcoholic related and look what can happen. My choice not worth it.
Try the non alcohol beer/wines If TP team ok with this.
Stay healthy b/c it sounds like u r on the right track with your Liver Transplant 😊💚

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I too am a non-alcohol related liver transplant and what I know is: alcohol adversely effects the life sustaining tacrolimus; that alcohol is toxic to the new liver which is doing its best to be healthy in my foreign body; and if I were a former drinker the alcohol triggers a habit to avoid because it leads to rejection.
Whole liver transplants are a rare and very precious gift. There are those still waiting for their life saving opportunity. It is our responsibility to look after the livers we have been given.
It not only helps you, it helps those who know you that you no longer drink alcohol for any reason or occasion. There is alot of pleasures and traditions we give up for our second chance at life. The change in life style gets easier (for you and others) the longer you adhere to the rules.
I wish you the best, Barbara

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@myfablife

Hi Jackie,
I am 2yrs. LTP have been doing great monthly labs on prograf/myfortic. Over the holiday went into acute rejection, never been so scared, afraid stressed out in my life, I am now back on prednisone “yuk” and increased immuno meds more lab visits and clinic visits possible liver biopsy. All I could think about I am going to loose this gift of life I have been given. Drs. told me well at least u r not drinking he said that their r so many people given a second chance at life and go back to drinking go into liver failure and the Drs. have to get them back to health again. Alcohol is a toxins to our livers especially if your liver disease was not from alcohol.
I to did enjoy a cold beer and a glass of wine but u just have to make a choice b/c u could have-complications my liver disease was non alcoholic related and look what can happen. My choice not worth it.
Try the non alcohol beer/wines If TP team ok with this.
Stay healthy b/c it sounds like u r on the right track with your Liver Transplant 😊💚

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@myfablife, Acute rejection is frightening! Was that episode over Thanksgiving, the 24th? How did you discover the rejection? Did you go to ER? how was it treated. and...How are you now?

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Yes it is, direct admit to hospital 11/22 I had my monthly labs drawn the week b/f and my numbers were high. I am on high dose prednisone and they have increased my prograf and myfortic also.. what they want to do is a liver biopsy but I 🙏🏻 the increased meds r going to get me back on track.
Last labs numbers are still high so I will do another reck next week. I am not feeling as well as I was so I kinda knew something was up.
Thank u for checking on me💚❤️😊
I am staying positive all will be good.

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@sarah82, I want to invite you to this transplant discussion group.

Connect is a community of patients, and we do not interpret test results. Since you have recently been diagnosed with cirrhosis, this is a good place to meet others who have experienced a new diagnosis and can share experiences.
What is your diagnosis? What do you want to ask here?

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@parmcat

Awesome!!! I am so happy for you!!!!!!!

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Can you tell us your story after receiving your transplant?
What were some of the things you experienced and how did you deal with them?

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