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Liver transplant - Let's support each other

Transplants | Last Active: Jun 22 9:17am | Replies (1606)

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@mbentley

I’m new and hope to be listed at Jacksonville Mayo for a liver. I have NASH and liver cancer 2 cm my Meld is between 11-13.
I finished the evaluation last week with heart cath.
How does it work if I’m listed. Surgeon says after 6 months I’m most likely getting a liver.
What happens next?
IR treatment on liver cancer?
Who contacts me when liver is available?
We’re do I go if liver is available?
Anyone been through this in Jacksonville Mayo?

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Replies to "I’m new and hope to be listed at Jacksonville Mayo for a liver. I have NASH..."

Hello Bentley,
Welcome to our group. Sounds like you are on the TP list accruing points (this takes six months) that will up your MELD score due to your cancer. More information here https://optn.transplant.hrsa.gov/media/2846/liver_guidance_hcc_201706.pdf
Have you been assigned a coordinator? They usually coordinate all your care a request appointments for you. You then call scheduling to set up times for those to be sure you can be there. Your coordinator can answer any questions you have or direct them to the best person on your team to get an answer. The best way to communicate with them is through the patient portal. You can set up a link to that on your phone here https://www.mayoclinic.org/apps/mayo-clinic
Your coordinator will contact you when a liver is available and you will go to the hospital there at Mayo in the Mayo building I believe at the registration desk. Always check with your coordinator who keeps up with all the recommendations for you from your team. You can send messages to anyone on your team with any questions via the portal. It is the best way I have found to keep track of everything. It even had a notes section so you can review what your doctors say as I often forget when under the stress of the appointment itself. You are in the best place for care. Your team will keep you informed and take all of your health in careful consideration during this process. Wishing you the very best.