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.

Hi

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

Thans

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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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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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@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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@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?

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@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.

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@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. ❤

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@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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Mine took 7 days, 1 week plus 2 days the next week.

Then I had a million things to accomplish before it went before the Mayo Jax board. This whole process took close to 4 months. I almost got put on the list during ICU stay but got better and got deferred for counseling. I've completed everything and got a phone call this morning 6/26/23 that my file was going back to committee this Wednesday and likely will be approved.

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Congrats markslivertransplant. I wish you the very best. ajdo129 aka Barbara

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@jaxpilot, Welcome to Connect! And Congratulations on your approaching 1st year with your new liver and for the co0mpliments of "looking good' . As a recipient, I know that the "You looking good" compliments are accompanied by your feeling good! Isn't it great to be healthy again?

Will you be doing anything to celebrate/honor your donor? Here is where members have shared their ideas. I invite you to join us there!Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/

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