1. < Transplants

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.

luckonetj | @luckonetj | Aug 25, 2019
In reply to @craiger "Id sure like to talk to you about cieders..is that possible" + (show)
@craiger

Id sure like to talk to you about cieders..is that possible

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@craiger , since I am a transplant recipient at CS. I would be happy to help with info.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 25, 2019

@craiger, I want to welcome you to Mayo Connect. I want to tag @luckonetj o this conversation because he is the patient who mentioned Cedar Sinai. I know that he can answer your questions about his experience.

Are you a liver patient? Are you considering an organ transplant?

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1 reply
craiger | @craiger | Aug 25, 2019
In reply to @luckonetj "@contentandwell , my first doctor was a GP and was of no help. I looked for..." + (show)
@luckonetj

@contentandwell , my first doctor was a GP and was of no help. I looked for a liver specialist in my HMO network and found a liver surgeon who was the only liver specialist in network in my area. I asked for a referal to one of the transplant hospitals near me. My primary and liver doctor went back and forth deciding who would write the referal for a transplant evaluation. On my second and last meeting with the liver surgeon he telephoned a liver transplant surgeon at Cedar Sinai. I had a phone number and a name of a transplant surgeon when I entered the hospital at MELD 40. I gave the name and phone number to the attending nurse who them gave it to the department that found a open bed a Cedar Sinai. However, it was luck where I ended up because my condition was such that I would get the first bed that opened up at either UCLA, SC. USC Transplant centers. In hind sight I I credit wishful thinking and many prayers by my lovedones. My illness was ten years long.I was used to the illness and could have gone in either direction. My family made the loving choice to keep me around. The vote was 3-0 yet my vote didn't really count. I was tired of being sick and had planned for either outcome. The unknowns were disconcerting until I finally gave up trying to control the situation and trusted my doctors and my faith in the future. It all turned out OK.

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Id sure like to talk to you about cieders..is that possible

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1 reply
craiger | @craiger | Aug 25, 2019
In reply to @gaylea1 "@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone..." + (show)
@gaylea1

@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone on this site before from our area. I joined connect at Mayo about a year ago as I had no support group here in London. This site has been helping me along my journey. They have been invaluable in support and advice. I was put on the wait list July 10th 2016. My MELD score is 30+ and am still waiting for a match. I would love to hear about your experiences with the transplant clinic at UH. I would love to hear frm you.

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Did you get your liver?

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wildcat | @wildcat | Jul 29, 2019
In reply to @tayloryvette "I too am a pre-liver transplant candidate and have just as many questions, however, I wanted..." + (show)
@tayloryvette

I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

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Hi Taylor

Please try not to be too scared. I, too, lived in a rural area with my husband and our animals; we had a busy hotel an , yes, liver disease, can creep up on you especially when you are so busy and distracted all the time. I was ill for four years without realising what was wrong until the physical symptoms became so bad that i sought help from my GP. After that, I was in the hands of my consultants and hospital who were wonderful.

I had my transplant five years ago and I feel as if I have a whole new life. I am on minimal medication and, honestly, some days I think it was all a dream. It was also a good learning experience is so many ways so it's not all negative by any means. I have a better life now and I value that life more than ever.

I know that I am in the unusual position of having no financial worries as health care here in Scotland is completely free. I am so sad when I hear the stories on this wonderful forum about people struggling to pay for care and medication.

Please be assured that members of this forum will give you all the help and advice you need. I wish I had known about it when I had my own transplant. There is a wonderful life waiting for you after your transplant.

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JK | @contentandwell | Jul 27, 2019
In reply to @rodney9999 "Just out of curiosity does anybody have any credible information out there regarding cellular memory transference?..." + (show)
@rodney9999

Just out of curiosity does anybody have any credible information out there regarding cellular memory transference? My wife and I were talking about that the other day. We are both Packer fans....she said as long as I don’t instantly become a Vikings fan it’s all good. 🙂

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@rodney9999 You got me curious about this so I did some googling. Most of the traits and tastes that people think they may have acquired from their donor can be explained by other things. Simply going through what we have gone through can have an effect on a person. I am pretty much the same person I was before, perhaps a bit more sympathetic but that was always a trait of mine. If I had to come up with any change in me I think I enjoy moderately hot (spicy) foods more than I used to but I also think that as a person ages their taste buds are not as strong so that could be the reason for that.
JK

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rodney9999 | @rodney9999 | Jul 26, 2019

Just out of curiosity does anybody have any credible information out there regarding cellular memory transference? My wife and I were talking about that the other day. We are both Packer fans....she said as long as I don’t instantly become a Vikings fan it’s all good. 🙂

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 26, 2019
In reply to @suzeaz "Hi and keep strong. I'm a post transplant patient. Are you having any problem with fluid..." + (show)
@suzeaz

Hi and keep strong. I'm a post transplant patient. Are you having any problem with fluid build up? I sure did. Talk to your Dr's. They can petition you to get higher up the transplant list based on your situation.

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@suzeaz, Welcome to Connect. How long ago did you receive your transplant? How are you doing now?

You are absolutely correct to encourage patients to talk with their doctor. Liver disease and transplant require a team effort between doctors and patient.
@tayloryvette, Here is some information about the MELD score written by the transplant staff that supports your menton about petitions by the doctor in some cases.
Pages>ransplant>The MELD Score: Definitions and Frequently Asked Questions
https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 26, 2019
In reply to @tayloryvette "I too am a pre-liver transplant candidate and have just as many questions, however, I wanted..." + (show)
@tayloryvette

I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

Jump to this post

Tayloryvette, Taylor, I am sorry that you are going thru this miserable time. Are you currently under the care of a liver specialist? What is the diagnosis for your liver failure?

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benlam11 | @benlam11 | Jul 26, 2019

Taylor, hang in there. I now live in Las Vegas, however since liver transplants are not available in Nevada, I started researching transplant centers. For me I chose the MAYO in Phoenix and started the getting ready tests in Feb. of this year. I was almost complete (Stage 5 Kidney Disease and non-alcoholic cirrhosis of the liver). After a long story, I'll skip - I was emergency transferred from Las Vegas to Phoenix. Had my last test (angiogram - if you don't pass - no transplant - and was sent to my accommodations. That Night after being on the list for just a few hours - they had a donor that was an exact match. My liver (I'm only 6 weeks out) has been normal almost no pain - my kidney is another issue. Get to a Great transplant center and ask approximate waiting times. Here in Phoenix it's usually months - instead of years elsewhere Also look at their success rate now and several years out. Do not delay.

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