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.

@donfay1

Hello everyone,
A Canadian, I had a live donor liver transplant 9 years ago and things have gone so very well (thankful). Have just had repeated blood results showing ultra high AST (500 on CDN scale) and other liver enzymes in the "HI" range. Does anyone have experience with the potential causes for this surprise result?

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@donfay1, I hope you saw the reply from fellow Canadian @footballmum. I wonder if this related discussion may be helpful for you:

- Stubbornly elevated ALT and AST
https://connect.mayoclinic.org/discussion/stubbornly-elevated-alt-and-ast-1/
Here's a list of other discussions about elevated enzymes post liver transplant https://connect.mayoclinic.org/group/transplants/?search=enzyme&index=discussions

Don, What is your team suggesting?

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Thanks. Yes and no. Mayo could not find a FedEx tracking number, so they were gracious enough to resend. I have a tracking # and have been able to verify it arrived and was signed for. Now I wait for the imaging cd to be delivered to coordinator from mail room. Then she has to use access code, which I provided, to view and send to review committee for review next Thursday. Then I will know yea or nay. Ty for asking. 😄

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I got told I was going to get a second chance on transplant evaluation but they said I missed a telephone call and no one called my cell or home number. I'm very emotional and scared now they told me I'm not a going to get my second return this montn

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@juliefaith69

I got told I was going to get a second chance on transplant evaluation but they said I missed a telephone call and no one called my cell or home number. I'm very emotional and scared now they told me I'm not a going to get my second return this montn

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@juliefaith69, I would like to welcome you to the transplant support discussin group. As a patient, I can understand how scared and confused you must be feeling. From your post it sounds like you missed a phone call and that are not going to have your second return (appointment?) this month.

My suggestion is to call back and ask what other options are available to you.
I hope you get some information that will help you to proceed forward.

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Hello, I was diagnosed with HCC in September 2023 and had Y90 treatment in November 2023. They killed the 3.6 cm single tumor. I was put on the list at that time and received exception points in May 2024. Bloodwork is still good and follow up MRIs are good. Next one is this week. Not sure what to expect, but hoping to stay in good health until the call. I was wondering about recovery after transplant. Specifically, how soon can you move around the house including going up and down stairs. Will I be bed bound for so initial period of time? Any feedback for what to expect during the first 30 to 90 days at home would be much appreciated.

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@gammie8

Hi Rosemary, my husband is seeing the transplant team as an outpatient at this time. He does all his bloodwork locally but we travel to Houston Medical Center every 2 to 3 weeks. Yes the process is very grueling! At times we don't know if we are coming or going. Ha! But with all that we have been through from what I have read and heard if he can get relief with a new liver, it will be so worth it. My husband is 74 years old and most people are younger that have transplants. His health is getting worse because of the swelling and all the doctors tell us is that he will be better after transplant. I am so hoping so!!

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Hi Gammie8,

I am new to the board and reading older posts. I am on the transplant list and hoping for a call soon. I am over 70 like your husband. Did he finally get his transplant? Is he doing well? I hope so.

Thanks,

In The Now

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@phillydawg

Hello, I was diagnosed with HCC in September 2023 and had Y90 treatment in November 2023. They killed the 3.6 cm single tumor. I was put on the list at that time and received exception points in May 2024. Bloodwork is still good and follow up MRIs are good. Next one is this week. Not sure what to expect, but hoping to stay in good health until the call. I was wondering about recovery after transplant. Specifically, how soon can you move around the house including going up and down stairs. Will I be bed bound for so initial period of time? Any feedback for what to expect during the first 30 to 90 days at home would be much appreciated.

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Hi, @phillydawg. You have had quite an interesting year, haven't you? I know that you are happy and worried at the same time. My transplant was in April 2009 at Mayo Rochester, and I remember clearly how I felt while waiting for lab results and hoping for the phone call to let me know that it was time for my transplant. I do hope that your results next week are going to be favorable.
Prior to my transplant, my husband and I stayed at the Gift of Life Transplant House in Rochester MN for several months, and so I was able to ride the patient shuttle to the hospital to check in for my surgery after my phone call. I went imediately registered and checked in at the Liver transplant Dept. I was prepped and my husband was able to be with me when until I was rolled to surgery. My surgery went well, and the next day, I was rolled to a room in the ICU for observation until I was taken - in a wheelchair- to my hospital room where I spent 7 days. On the morning after surgery, I could eat a light breakfast. And the nurses helped me out of bed to begin walking! During those days in hospital I became stronger and the nurses taught me and my husband everything that I needed to know and before discharge. I did need a walker and a wheelchair because I had to use a walker and wheelchair prior to transplant due to my weakness and health prior to my surgery.
After discharge from inpatient care, we returned to the Gift of Life House via a taxi, and my husband pushed me inside in a wheelchair. I began gaining strength and was soon using walker most of the time. By the time I was discharged from outpatient care, I was walking pretty much on my own. That was 30 days after my surgery. Then we had a 850 mile drive back to our home in Kentucky. On that trip home, I was able to stay in a motel, and to eat in a restaurant. I slept most of the way home, though.
Once at home, I gradually increased my walking time and distance,and I got tired easily. Mostly, I had to regain my stamina, muscle mass, and weight. In July I was able to be at our son's wedding! and in November, after my 5 month check-up, I was approved to go hiking, but still lacking stamina which took a bit longer.
As you already know, each patient is different, and I need to add that I had been flown to Mayo out of ICU in KY in late Feb with acute kidney failure in addition to my need for my liver transplant. When I received my liver and kidney transplant in April, I had a lot of catching up to do.

@phillydawg, I think that you will want to want to join these discussions, where some of the recent transplant patients/members are sharing their more recent experiences.
- It's just one of those days: Share your transplant recovery tips
https://connect.mayoclinic.org/discussion/its-just-one-of-those-days/
- How to Sleep Post Liver Transplant in Initial 30-Day Recovery?
https://connect.mayoclinic.org/discussion/how-to-sleep-post-liver-transplant-in-initial-30-day-recovery/
Please click the link, and read what others have experienced. Your questions are welcomed, and anytime you want to direct a comment or question to a particular member - use their @name.
Hope the labs go well. Let me know if I can be of any assistance.

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@footballmum

Good morning from a fellow Canadian.
I had my liver transplant in October 2020. I remember the Dr's saying that besides liver issues there are lots of reasons for an increase in your liver numbers. The big one I remember is rheumatoid arthritis. Have you seen a rheumatologist yet? I know back 12 years ago when I was first diagnosed with primary biliary cholangitis they thought I had arthritis due to the extremely high AST. 🇨🇦

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Hey. Do you have primary biliary cholangitis and was diagnosed 12 years ago? and also a liver transplant? a familiar was recently diagnosed with the same, the PBC and the cancer. He's only 27 years old. Your testimony give me hope that he can have a good prognosis.

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@rosemarya

Hi, @phillydawg. You have had quite an interesting year, haven't you? I know that you are happy and worried at the same time. My transplant was in April 2009 at Mayo Rochester, and I remember clearly how I felt while waiting for lab results and hoping for the phone call to let me know that it was time for my transplant. I do hope that your results next week are going to be favorable.
Prior to my transplant, my husband and I stayed at the Gift of Life Transplant House in Rochester MN for several months, and so I was able to ride the patient shuttle to the hospital to check in for my surgery after my phone call. I went imediately registered and checked in at the Liver transplant Dept. I was prepped and my husband was able to be with me when until I was rolled to surgery. My surgery went well, and the next day, I was rolled to a room in the ICU for observation until I was taken - in a wheelchair- to my hospital room where I spent 7 days. On the morning after surgery, I could eat a light breakfast. And the nurses helped me out of bed to begin walking! During those days in hospital I became stronger and the nurses taught me and my husband everything that I needed to know and before discharge. I did need a walker and a wheelchair because I had to use a walker and wheelchair prior to transplant due to my weakness and health prior to my surgery.
After discharge from inpatient care, we returned to the Gift of Life House via a taxi, and my husband pushed me inside in a wheelchair. I began gaining strength and was soon using walker most of the time. By the time I was discharged from outpatient care, I was walking pretty much on my own. That was 30 days after my surgery. Then we had a 850 mile drive back to our home in Kentucky. On that trip home, I was able to stay in a motel, and to eat in a restaurant. I slept most of the way home, though.
Once at home, I gradually increased my walking time and distance,and I got tired easily. Mostly, I had to regain my stamina, muscle mass, and weight. In July I was able to be at our son's wedding! and in November, after my 5 month check-up, I was approved to go hiking, but still lacking stamina which took a bit longer.
As you already know, each patient is different, and I need to add that I had been flown to Mayo out of ICU in KY in late Feb with acute kidney failure in addition to my need for my liver transplant. When I received my liver and kidney transplant in April, I had a lot of catching up to do.

@phillydawg, I think that you will want to want to join these discussions, where some of the recent transplant patients/members are sharing their more recent experiences.
- It's just one of those days: Share your transplant recovery tips
https://connect.mayoclinic.org/discussion/its-just-one-of-those-days/
- How to Sleep Post Liver Transplant in Initial 30-Day Recovery?
https://connect.mayoclinic.org/discussion/how-to-sleep-post-liver-transplant-in-initial-30-day-recovery/
Please click the link, and read what others have experienced. Your questions are welcomed, and anytime you want to direct a comment or question to a particular member - use their @name.
Hope the labs go well. Let me know if I can be of any assistance.

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Hi!
My brother is diagnosed with stage 4 liver cirrhosis & doesn’t look well. Been sleeping all day. I am really concerned & will
appreciate if you could help me with a reference of a good doctor to connect with at the Mayo Clinic . I am lost 😞

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@vandi

Hi!
My brother is diagnosed with stage 4 liver cirrhosis & doesn’t look well. Been sleeping all day. I am really concerned & will
appreciate if you could help me with a reference of a good doctor to connect with at the Mayo Clinic . I am lost 😞

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I would simply call and ask for appointment for transplant department on general. It is team approach, with ulti many departments involved. My initial appointment was with two doctors for basic intake and review of medical history and records. They approve me for assessment to the transplant team. From there, I went through a three yo four dsy intake assessment, meeting doctors a running through extensive testing to see if I was sn appropriate candidate who would qualify for transplant or if I needed transplant. They monitor health closely. My doctor called and made my referral based on my testing with him after referral and approval, mayo took the reins do to speak. Make a call! There is hope out there.

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