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.

@jinja320

Hi @klm3

My first transplant was through living donor. I was 17 years old and my donor was my father, he was 40. At that time we were no where close in height. I know the size of the organs matter but im not sure it has anything to do with height. My second donor although he was deceased he was also much taller than I was. He was 18 and i was 37.
I hope this helps a bit.

All the best with your consultation and I hope your surgery goes well if you decide to go ahead with it.

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Thank you!

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@klm3

Hello - If anybody can help me that would be great. I am fortunate enough to have a relative open to potentially being a liver donor. I have been referred to Mayo Phoenix and will hopefully be able to get a consultation in a month or two. Does anyone know what the height differential is for a donor? - for example: do you have to be within 8 inches of each other? And, how soon is too soon? My MELD is around 12. Our blood types are compatible.

Thanks for any help.

Jump to this post

Hi @klm3

My first transplant was through living donor. I was 17 years old and my donor was my father, he was 40. At that time we were no where close in height. I know the size of the organs matter but im not sure it has anything to do with height. My second donor although he was deceased he was also much taller than I was. He was 18 and i was 37.
I hope this helps a bit.

All the best with your consultation and I hope your surgery goes well if you decide to go ahead with it.

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@jamesduaiswamy

Hello

You survived two transplants and that is just amazing.
Its not fun, the processes one has to go through after surgery.
It is very regimental and to the point and no deviations.
I had my transplant almost 4 years and 4 months ago. I am still around not sure how long, but I dont think about it. Just take one day at a time and be thankful God let us to keep breathing.
You may want to start a strict workout program to keep your health and weight in good shape. Trust me it is really tough to lose weight.
But you will be ok.
Take care and God Bless

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Thank you!
My recovery went really well. Im forutnate that i didn't have any major issues. The regiment was hard but i was determined to do what i was told. I have been working out once i got the go ahead from doctors. My eating habbits definetly chanhed after the second surgery. I was on a strict diet and it helped me in the long run stay away from Junk food. I have no desires for it now. I was also diagnosed with Ulcerative Colitis and we use Prednisone to control flairs so my weight fluctuates because of that. I enjoy going for jogs now, i try to get it done 3 times a week.

I thank God everyday I wake up to a new day. We don''t know when our time will come but i'm am continuosly grateful to have both surgeries go so well.

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@rosemarya

Hi, @jinja320! Welcome to Connect. I am happy to meet you and excited to be the first one to say "Hello" to another liver and kidney recipient!

I am a liver and kidney transplant recipient. I got both organs in a simultaneous transplant surgery in 2009 from an anonymous deceased donor. I had Primary Sclerosing Cholangitis (PSC) and I was 60. I read that you were 17 for your 1st transplant. I must say that you are an inspiration to me - because you are willing to share your story which gives hope to others who are undergoing their own transplant journey.

@jinja320, As a member on Connect, you are able to join into any discussion, anytime with a comment or a question, or an emotion (Like, Helpful, Hug) You mentioned a 3 year anniversary coming soon. Here is a group that I thought to share with you.
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
Did you have a living or deceased donor(s)?
Are you comfortable to share a little about the reason for the 2nd transplant?

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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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@jinja320

New to Mayo Connect, My therapist thought it would be great to talk others who have been in my situation. I've had two liver transplant, the first i had at 17 years old and im approaching my 3 years anniversary of the second transplant. I had a kidney transplant the same time of the second surgery( during Covid). I couldn't remember what recovery was like after my first surgery but this second time around was an experience. The weight gain form being home for 6months was not fun, im still strugging to maintain a size im comfortable with but with prednisone nothing is certain.
Lets talks i'd be happy to share my stories with anyone who are awaiting surgery or post.

Jump to this post

Hello

You survived two transplants and that is just amazing.
Its not fun, the processes one has to go through after surgery.
It is very regimental and to the point and no deviations.
I had my transplant almost 4 years and 4 months ago. I am still around not sure how long, but I dont think about it. Just take one day at a time and be thankful God let us to keep breathing.
You may want to start a strict workout program to keep your health and weight in good shape. Trust me it is really tough to lose weight.
But you will be ok.
Take care and God Bless

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@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, @keggebraaten

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@rosemarya I don't live too far from Mayo AZ. So...I'm going to hold off on going for awhile since there is really nothing they could/would do for me at this time.

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@klm3

@rosemarya Thank you for your advice. And I've read @jamesduaiswamy post as well. I did call the local Phoenix Mayo and was told that I would have to go through the process of being put on the transplant list and then we could go through the living liver process. It was a transplant nurse I spoke with.

Right now, I guess I'm healthy enough to not be on the list and I got good news today that my MELD dropped down to 11 (at one point in September it was at 20). All of my conditions are cirrhosis related but nothing that would put me in consideration for the list. I have a Hematologist who is going to run a test for Leukemia but I really don't have any symptoms of that that can't be attributed to my liver health. I was just hoping to get some of the evaluations out of the way and not do the transplant until a few years later, as oppose to what I must do now - wait. I understand donating part of your liver can be difficult and many probably don't know that they can donate while alive but I'm surprised by how little living liver donations occur.

I don't have any questions about evaluation prep but thank you. My questions are mainly to work out how and where the out of town donor would get tested. And, I was told that they would go over cost and insurance at the time of an appointment.

Jump to this post

@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.

REPLY
@klm3

@rosemarya Thank you for your advice. And I've read @jamesduaiswamy post as well. I did call the local Phoenix Mayo and was told that I would have to go through the process of being put on the transplant list and then we could go through the living liver process. It was a transplant nurse I spoke with.

Right now, I guess I'm healthy enough to not be on the list and I got good news today that my MELD dropped down to 11 (at one point in September it was at 20). All of my conditions are cirrhosis related but nothing that would put me in consideration for the list. I have a Hematologist who is going to run a test for Leukemia but I really don't have any symptoms of that that can't be attributed to my liver health. I was just hoping to get some of the evaluations out of the way and not do the transplant until a few years later, as oppose to what I must do now - wait. I understand donating part of your liver can be difficult and many probably don't know that they can donate while alive but I'm surprised by how little living liver donations occur.

I don't have any questions about evaluation prep but thank you. My questions are mainly to work out how and where the out of town donor would get tested. And, I was told that they would go over cost and insurance at the time of an appointment.

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@klm3, Good Morning. I commend you for your self advocacy and for seeking answers about your current health concerns. There are other things besides liver disease that can affect the liver. Right now, is sounds as if your doctors are looking for a diagnosis for your elevated lab results.

Living organ donations are becoming more and more common that they were when I was waiting for one. For example, my original transplant center in KY did not perform living liver transplants until a few years ago.

I transplanted at Mayo Rochester. I can assure you that the patient/caregiver education at Mayo is fantastic. I hope that your upcoming testing will go well for you. In the mean time, in the words of my GI - do healthy things like: remain active, develop healthy eating habits, avoid alcohol and over-the -counter meds/vitamins/supplements w/o doctor advice, keep all doctor appointments and lab schedules.

Will you be traveling to Mayo AZ?

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@rosemarya Thank you for your advice. And I've read @jamesduaiswamy post as well. I did call the local Phoenix Mayo and was told that I would have to go through the process of being put on the transplant list and then we could go through the living liver process. It was a transplant nurse I spoke with.

Right now, I guess I'm healthy enough to not be on the list and I got good news today that my MELD dropped down to 11 (at one point in September it was at 20). All of my conditions are cirrhosis related but nothing that would put me in consideration for the list. I have a Hematologist who is going to run a test for Leukemia but I really don't have any symptoms of that that can't be attributed to my liver health. I was just hoping to get some of the evaluations out of the way and not do the transplant until a few years later, as oppose to what I must do now - wait. I understand donating part of your liver can be difficult and many probably don't know that they can donate while alive but I'm surprised by how little living liver donations occur.

I don't have any questions about evaluation prep but thank you. My questions are mainly to work out how and where the out of town donor would get tested. And, I was told that they would go over cost and insurance at the time of an appointment.

REPLY
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