Liver transplant - Let's support each other

@rrichardparker I am a new member and looking to be a part of a community to share my experiences and learn from others. My transplant started on March 10, 2023 and concluded March 12, 2023 (there was a complication) so I still have moments when communicating with people who can relate to some of what I'm dealing with.

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

Hi, @anniejax04 and Welcome to Mayo Connect. I am a transplant recipient, and I understand how you are feeling as you approach the date of your liver transplant evaluation. I can assure you that you are not alone.
Are you currently a patient at Mayo? If not, you will be amazed at the coordinated care and the focused attention on you-the patient. You should have received a detailed schedule of all of your appointments. Yes, it is going to be like a marathon and you will sleep well afterwards!

My advice is to bring a notebook to take notes and write questins, and a tote bag for all of the information that you will be given. Bring some snacks and a bottle of water in case you don't have time for eating. Of course a light sweater is a necessity because the buildings are always cold!

I will be looking for some transplant patients from Phoenix to connect with, In the meantime, I have located a discussion that has been ongoing for a long time. Like any conversation, it does veer off course. Yu might want to look at the beginning (oldest) comments first.
- Transplant Evaluation - What to expect
https://connect.mayoclinic.org/discussion/transplant-evaluation-what-to-expect/

Annie,
Will you be traveling to Phoenix? Have you arranged lodging? Is someone coming with you to be a 2nd set of ears? What is your biggest concern right now? Do you have any questions about any of the tests?

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.

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!