Liver transplant - Let's support each other

Congratulations and welcome,
I had several complications following my liver transplant in October 2020. If you're willing please share and maybe someone will have experienced some of the same complications. 🤗❤️🇨🇦

@robertj936, As a mother and as a patient who has received a liver transpant, I can feel your frustration and anguish with the current situation regarding your son. I am sorry that you are getting turned down by transplant hospitals at this time, however the reason it that excess alcohol consumption is a disqualifying condition. Alcohol is toxic to the liver and a potential recipient must first prove that he/she can refrain from alcohol.

I would like to share this link with you/and your son. He is not alone. Please join the conversation and discover how others are working to qualify for transplants.
- Alcohol Withdrawal Program Required for Transplant
https://connect.mayoclinic.org/discussion/alcohol-withdrawal-program-required-for-transplant/
Has his doctor encouraged him ot seek alcohol counseling?

Your son has to give up alcohol and prove that he has for at least 6 months before he will be considered for a liver transplant. If he does not do this he will die. My MELD score peaked at 30 and never came down. Luckily I survived long enough to receive a liver transplant. However, I gave up alcohol and proved it by attending online AA meetings at intherooms.com The shock of knowing I would die gave me the motivation to do this. Stress to your son that if he wants to live he has to do this. Note centers will know if he has given up alcohol by his liver enzyme tests and/or PETH tests. These are tests for alcohol abuse and cannot be faked.

Yes, I will be at the Phoenix Campus with my husband as my support. My biggest concern is that I have yet to receive a schedule.

@anniejax04, Annie, I have lost track of time (although I'm sure you haven't), and I just noticed that your husband's appointment is almost here! Did you get a schedule, yet?

The appointment is for me, my husband is coming with as my support team.

I have not received a schedule for my appointment.

Annie, If this is your first appointment/meeting with the transplant team, it is possible that there is not a defined schedule.
When I had my initial appointment with my local transplant dept in KY, it was a long day that included labs, consults and meeting member of the team like social worker, nurse, dietician, and a transplant surgeon. The entire process was explained, and my husband and I had the opportunity to ask questions. It was a long day, but a very informative day. It was frightening and also comforting. We learned that there was a whole team of people who were experts with the medical knowledge who were there for us. We became part of a team that day!

However, if this is an appointment for the evaluation to determine eligibility for the transplant wait list, it involves several days of medical scans/tests. For this "evaluation" you will have several days of scheduled appointments. Many transplant patients call it a marathon. And if this is your situation, I suggest that you contact Mayo about schedule.

Have you signed up on the Mayo Clinic Patient Portal yet? You should be able to do that as soon as you receive your patient number. It is where you can access your Mayo information, including scheduling.

Annie, I transplanted at Mayo Rochester, and I know that you are going to be surrounded by the best of care at Mayo Phoenix!❤️

I appreciate you very much!! Thank you for all the information. I do have an account with Mayo Patient Portal.

I trust I will be in good hands, however, I’m nervous about the appointment.

It’s reassuring to know that you had a successful transplant!

You will do well!

Jackie, What did you decide about taking the Gabapentin? My son took it for a period of time after spine injury and don't know if he had side effects, but it was part of his recovery process.
Like you and @edwardwallace, I accept that medications have side effects, but not everyone experiences the same reaction to the meds. I guess what I'm saying is that it is a balance of risk vs benefit.

@jackie421blfdgurl - If you are still undecided, here is an idea for consideration: Talk to your doctor about trying the medication for a few weeks, and then checking in with him to report how you are responding. Then you can decide whether to continue, or to stop.
Does that sound like something you would consider trying?