Liver transplant - Let's support each other

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!❤️

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

I have not received a schedule for my appointment.

@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?

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.

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.

@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?

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. 🤗❤️🇨🇦

Hello,,,,,, My son age 35 has a MELD score of 44 because of Alcohol consumption. We are trying to get a liver transplant he needs to survive. We are getting turned down at all the hospitals as they see him as very high risk. Any suggestions of where to go would be greatly appreciated.
Thank you
Robert

Hey Rosey. Thank u as always for your reply. Let me tell u girl...I am dancing..one thing I love to do... it's I am not paying attention be it going up stairs or down..I walk outside and watch the sidewalk more than looking up. It is difficult when I fall I can't bend my knees to get up due to my knee implants.i can squat but no kneeling on the knees... doctors forgot to mention that to me when they gave me new knees..but the pain is gone and I can walk. Oh well take it day by day. Like all of us. I know I had a very hard time with the surgertmt and my horrible 2 months in hospital ...dealing with new hernia .but have to find a little time to stop. ..thank God and b grateful and thankful. Of other people out there in the universe I have no complaints
Try and make day by day count.
Have a great day. Yesterday in Jersey we had thunder storms.
Today 84 and no humidity..yea!!!!! Hugs. Hugs. Hugs..

@coreyb77, Yesterday, I misspelled your name, so I'm checkingn to make sure that you get my reply.