Liver transplant - Let's support each other

@livertex
I see this is an older post. Wondering how you are. I am in a similar situation with a low MELD score of 8. I am on the TP list as I have had ablation of a liver tumor believed to be cancer. Currently feeling fairly well although fatigued and having insomnia. I would love to know how things progressed for you. Thank you if you are still active here and able to reply.

@parrot53, I'm happy that you have discovered the vast amount of wisdom and experiences that are 'hidden' in some of the older posts. Sometimes members post one time, and sometimes they become engaged in a continuing conversation that is beneficial and supportive. I noticed that you intended for your question to go to particular member. Please allow me to insert the correct contact @name for @livertrex

I remember the fatigue and the insomnia as part of my pre transplant period, and I hope that you continue to feel fairly well. In my opinion that is an accurate description for the changes that, in my situation, came on gradually. Fortunately, my GI was on top of it, and guided along the way until I needed to be referred to the transplant center in my region.

If you are wanting to meet others who have experienced long waits and wondered about MELD score, I want to share this discussion. It is long and it does veer off topic, however it is filled with real experiences.
-It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
Parrot -
Are you being monitored by the transplant center where you are listed? How does the possible cancer affect you transplant listing? Is any treatment or chemo required?

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?

Hello Rosemary,
Thank you for your reply. I did read that thread. I knew it was iffy that @livertrex would still be active. Not sure about how to address posts. I guess this inquiry could go to this group.
I am being monitored by my team at Mayo Jacksonville. I am on the TP list but inactive for now. I go four times a year to make sure there is no deterioration or new cancer. The tumor was ablated and now I have waited the required six months to accrue additional MELD points as outlined by UNOS for liver cancer patients. Because my liver function is still relatively good, I remain inactive for now. I do have portal hypertension and did have esophageal varices. A few other things unrelated to liver also. But nothing serious enough to jeopardize my TP status. I have come to understand that this is a long journey for some. I am so thankful to have you all here for support.

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.

Hi I hope to be on the TP list after Wednesdays committee meeting.
My nurse is Christina and she’s wonderful. I’m afraid I bother her so much with questions.
I’ve learned a lot. I live in Ky and will need to relocate near the hospital so we can have our pets and family visits. Still I have many questions on what’s going to happen.

To those who wonder what happens next after you ate told your MELD score us high (mine was 26). The nurse coordinator told me Friday evening my MELD score then said the Organ Procurement Team will call me when they find a match. Much to my surprise less then 48 hours later the procurement team (not connected to Mayo) had a whole liver match who was brain dead. The family planned to take their lived one off life support on Monday. Monday early evening after the liver was checked for any concerns I got a call to be st Mayo Phoenix in 30 minutes. My surgeon transplanted late that night and into Tuesday morning. Surgery is 2nd most complicated that Mayo does and it takes 4 to 5 hours. My primary caretaker was texted at 2:20 a.m. "Old liver out. New liver in". Recovery is a couple of days in ICU and you are well medicated and observed frequently. Then you move to a regular unit to continue recovery. If you are interested I can tell you more details about post surgery. Hope this helps, Barbara

Hi, @mbentley. Welcome to Connect. I imagine that tonight is going to be a sleepless night as you wait to get a notification from the Transplant Committee. I hope that tomorrow night you will sleep peacefully, with decision and being listed. It is both frightening and exciting.

@parrot53, @mbentley, @ajdo129, have provided helpful information, already.
My transplant was at Mayo in Rochester, and my call was from my transplant surgeon. It came at 6:42 AM, and she asked me how I felt and if I was ready to have transplant surgery because they had organs for me. She told me to come right on the hospital, and to report to the transplant desk, and that the nurses would be waiting for me and take care of everything. (I must note that my husband and I were living at the Gift of Life Transplant House, only 7 blocks away with a patient shuttle.) So I just had to show up...and Mayo took care of everything. Plus my husband was always nearby or with me up until I was taken to surgery - and he was with me in recovery.

Your nurse is going to guide you and your spouse/caregiver through every step of waiting process. Once you are on the active transplant list. you will have the opportunity to ask your questions about the specifics at Mayo Jacksonville. There will be lots of information, and you will likely feel overwhelmed at times. That's okay because you just need to take care of you while the nurse(s) and doctor(s) guide you through every step.

Mbently, I live in central Kentucky, and was transferred to Mayo MN by my KY transplant dept. If you are comfortable share - Have you been a patient at Mayo in Jacksonville for a while? Or are you in Jacksonville because of the transplant?

I’m in Louisiville area now.
My evaluation was completed I hope last Friday. Wednesday night the committee meets.
We have been driving back and forth (12) hours one way. Two weeks in February and a week in March.
If everything works we plan to get a condo in the Jacksonville area.
We researched for the best place. We had my Baptist health family doctor and I set up evaluation at Mayo Jacksonville as we felt it may be the best area to quickly receive the TP.
I have HCC also at 2 cm so we’re hopeful of 6 months I will qualify more.

Sure