Liver transplant - Let's support each other

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.

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. 🇨🇦

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?