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.

Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jun 25, 2023
In reply to @klm3 "Hi again @rosemarya, I was referred to Mayo Phoenix and Mayo is going through the process..." + (show)
@klm3

Hi again @rosemarya,

I was referred to Mayo Phoenix and Mayo is going through the process of working with my insurance which should be finished in the next couple of weeks. Anyway, I would like to take you up on a question about the evaluation process. I was unable to find the answer myself. So... When going through the evaluation it seems that it could take up to a week. Do you know if I'll be admitted to the hospital for the evaluations?

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@klm3 I don’t know about liver transplants. I had a pancreas transplant. I have also gone through pretransplant evaluation for kidney transplant at Mayo Transplant Center in Rochester, MN. The initial evaluation was outpatient and took about a week. It was 5 days full of appointments to check me out head to toe. It was impressively thorough. There were a bunch of staff / disciplines involved to address everything including insurance coverage. I received an itinerary before I went and help with lodging and transportation issues. In the years since then I’ve returned for a few days to review and update some of the tests to keep current. I suspect procedures are similar at the AZ and FL campuses.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 25, 2023
In reply to @klm3 "Hi again @rosemarya, I was referred to Mayo Phoenix and Mayo is going through the process..." + (show)
@klm3

Hi again @rosemarya,

I was referred to Mayo Phoenix and Mayo is going through the process of working with my insurance which should be finished in the next couple of weeks. Anyway, I would like to take you up on a question about the evaluation process. I was unable to find the answer myself. So... When going through the evaluation it seems that it could take up to a week. Do you know if I'll be admitted to the hospital for the evaluations?

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@klm3, The evaluation is typically done as an out-patient. And it seems to be a normal Mayo/Rochester pattern to schedule a 5 day period of time. I honestly don't know whether it takes the full 5 days for the evaluation, but I feel confident to say that it depends on the patient and the particular liver disease and underlying medical needs of the patient.
I had a unique situation: I was already in the hospital at Mayo Rochester when I was determined to be strong enough to undergo evaluation. Out of necessity, some of the evaluation was completed as inpatient and some after release to outpatient, as I needed a liver and a kidney evaluation.

So to answer your question - The outpatient scheduled evaluation procedures could take 5 days. You should get a schedule of the appointments prior to your visit.
I'll be looking forward to hearing about your schedule when you get it. ❤

REPLY
lsheerin | @lsheerin | Jun 25, 2023
In reply to @klm3 "Hi again @rosemarya, I was referred to Mayo Phoenix and Mayo is going through the process..." + (show)
@klm3

Hi again @rosemarya,

I was referred to Mayo Phoenix and Mayo is going through the process of working with my insurance which should be finished in the next couple of weeks. Anyway, I would like to take you up on a question about the evaluation process. I was unable to find the answer myself. So... When going through the evaluation it seems that it could take up to a week. Do you know if I'll be admitted to the hospital for the evaluations?

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Hi!
My husband had his evaluation done at Tampa General and he was admitted. He was there about 9 days.

REPLY
klm3 | @klm3 | Jun 24, 2023
In reply to @rosemarya "@klm3, How soon is too soon? That is a great question and I hope that you..." + (show)
@rosemarya

@klm3, How soon is too soon? That is a great question and I hope that you will learn the answer to that when you have your evaluation. Each of us is unique and our liver condition as well as related health issues.

I have a deceased donor. I have never heard mention of donor height being a consideration in the match. I urge you to read the information that @jamesduaiswamy has shared.

Here are some links that you will find helpful as you wait for your scheduled appointment:
- Living-donor transplantation
https://www.mayoclinic.org/departments-centers/living-donor-transplantation/overview/
- Transplant Blog - with Living Donor Toolkit
https://connect.mayoclinic.org/blog/transplant/
@klm3, Do you have any questions as you proceed toward evaluation? How can we help you prepare?

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Hi again @rosemarya,

I was referred to Mayo Phoenix and Mayo is going through the process of working with my insurance which should be finished in the next couple of weeks. Anyway, I would like to take you up on a question about the evaluation process. I was unable to find the answer myself. So... When going through the evaluation it seems that it could take up to a week. Do you know if I'll be admitted to the hospital for the evaluations?

REPLY
3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 9, 2023
In reply to @jinja320 "Thank you for the Welcome! My first surgey was done by a living donor. My father..." + (show)
@jinja320

Thank you for the Welcome!
My first surgey was done by a living donor. My father gave me a piece of his liver and i was blessed that have that for 20 years. My second surgery i got both Liver and and Kidney from a cousin of who passed away. It was a true miracle how fast the second surgery happened. With in a week or two of being told I needed a transplant I got a call one day that my cousin's parents wanted to donate to me.
I was also diagnosed with PSC. Its wonderful to meet someone else with the same diagnosis. I'm glad things have been working well for you. I pray it continues.

Jinja

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@arqui02000, If you click on the blue In reply tp at the beginning of this message, you can read about @jinja320 and her 2nd liver transplant experience.

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1 reply
arqui02000 | @arqui02000 | Jun 9, 2023
In reply to @jackie421blfdgurl "This is for transplant patients. I am a liver transplant 2yrs.i take tacrolimys. My Dr. Has..." + (show)
@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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jackie NEVER drink any alcohol please doctors find out this and if you need second liver transplant you are not a good choice when you even wash your mouth with Listerine

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jamesduaiswamy | @jamesduaiswamy | May 15, 2023

Hi

Please contact the Hospital transplant team.
They will go through the processes etc.

Thans

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ted82 | @ted82 | May 14, 2023
In reply to @keggebraaten "@klm3 - Welcome to Connect! I work with the doctors and nurses in the transplant center..." + (show)
@keggebraaten

@klm3 - Welcome to Connect! I work with the doctors and nurses in the transplant center at Mayo. For living donors, the beginning first few steps of the process can be done remotely. The potential donors can fill out our online form and if they chosen as a donor, they can have their bloodwork done locally to be sure they are a match and healthy enough to continue the process. Once those results are reviewed by Mayo, the donors can also do any routine preventative care locally that they might be missing such as colonoscopy, mammogram, skin checks, etc. These are things they may already have done if they are keeping up with their preventative care. Once they have their bloodwork approved by the team and are being considered a potential donor, that's when they will need to travel to the transplant center for consultations and testing. The transplant team needs to meet the donor in person to assess their health and willingness to donate. So in short summary, some tests can be done at home but generally the consultations need to be done at Mayo. I hope that's helpful information for you. The team will go over all those and other details once you are approved for transplant.

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Thank you for this information. Please inform me as to what my next steps are to get started with being a doner.

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Ginjah320 | @jinja320 | May 13, 2023
In reply to @rosemarya "@jinja320, I joined Connect because I wanted to meet someone else who had received a transplant..." + (show)
@rosemarya

@jinja320, I joined Connect because I wanted to meet someone else who had received a transplant due to PSC. I was monitored for nearly 8 years before I needed to be listed. I was inactivated when cholangiocarcinoma was suspected. My kidneys failed before I got a cancer free diagnosis. I was flown from ICU in Kentucky to Mayo Rochester to see the PSC specialist there. UofKy was not doing living liver transplants in 2009, so it was not an option. Then when I got to Mayo and was able to be reactivated on the transplant list, I needed a liver and a kidney, so the transplant list, living donation was not an option. I will never forget the phone call from my surgeon when she rold me that there were organs for me! I am forever grateful for the anonymous donor who gave me a new life.
I do not have Ulcerative Colitis although I have read that not everyone with PSC gets it. Did you have UC before your transplant?

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WOW! Truly amazing.
Happy it all worked out in your favor. I cam to this contry at 9 years old from the Island. When I got here my diagnosis was Autoimmune Hepatitis. I saw many different and things weren't getting better. A family memeber suggested Mount Sinai Hospital in Manhatten New York. After my first appointment we got the PSC diagnosis.
I developed Ulcerative Colitis some time after the first Liver transplant. It use to be just something i had and didnt bother me as much. These past year it has been kicking my butt.
However I wont allow it to get me down. I've come to far in this journey to give in.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 13, 2023
In reply to @jinja320 "Thank you for the Welcome! My first surgey was done by a living donor. My father..." + (show)
@jinja320

Thank you for the Welcome!
My first surgey was done by a living donor. My father gave me a piece of his liver and i was blessed that have that for 20 years. My second surgery i got both Liver and and Kidney from a cousin of who passed away. It was a true miracle how fast the second surgery happened. With in a week or two of being told I needed a transplant I got a call one day that my cousin's parents wanted to donate to me.
I was also diagnosed with PSC. Its wonderful to meet someone else with the same diagnosis. I'm glad things have been working well for you. I pray it continues.

Jinja

Jump to this post

@jinja320, I joined Connect because I wanted to meet someone else who had received a transplant due to PSC. I was monitored for nearly 8 years before I needed to be listed. I was inactivated when cholangiocarcinoma was suspected. My kidneys failed before I got a cancer free diagnosis. I was flown from ICU in Kentucky to Mayo Rochester to see the PSC specialist there. UofKy was not doing living liver transplants in 2009, so it was not an option. Then when I got to Mayo and was able to be reactivated on the transplant list, I needed a liver and a kidney, so the transplant list, living donation was not an option. I will never forget the phone call from my surgeon when she rold me that there were organs for me! I am forever grateful for the anonymous donor who gave me a new life.
I do not have Ulcerative Colitis although I have read that not everyone with PSC gets it. Did you have UC before your transplant?

REPLY
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