Liver transplant - Let's support each other

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.

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.

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

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.

@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.

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

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. 😄

@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?

@jmp1234, I'm just catching up with your situation. I hope the CD with all updated imaging has been received since you posted this. Following up with logistics is exhausting, especially when you're sick. Let me know if this has been resolved now.

Removed from unos by mayo clinic jacksonville due to 8 months of evaluation uncovering pulmonary thrombosis issue preventing transplant of liver. OK. Went to miami transplant institute as per suggested by mayo clinic jacksonville. Due to my diligence expediting the current medical records to miami, I was accepted in initial interview with transplant surgeon and now having to listen to blame game by both jacksonville and miami on why miami has not (says them) received cd with all current imaging. I am getting sicker by the day and running up on age deadline for surgery. I am exhausted physically and mentally from this stress and having a hard time staying positive when my life is literally in the hands of others. Not a fun story here.