Liver transplant - Let's support each other

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 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.

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.

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.

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?

@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?

@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.

Hi, @charliepuma, and Welcome to Connect. From the chart that you have attached, I am going to assume that either you or a loved one is a liver patient who is on dialysis. I don't know which score type that you should use and as a patient I have no experience of my own to share relating to it. The MELD score and how it applies to you needs to be interpreted by the liver doctor who ordered it. Only he/she and the transplant team will know of your unique medical circumstances. Does that make sense?

If you are interested in information about the MELD score, here is a link to an article from the Connect Blog Newsfeed:
- The MELD Score: Definitions and Frequently Asked Question
https://connect.mayoclinic.org/blog/transplant/
I am a liver and kidney transplant recipient and I received my transplant in 2009 at Mayo Clinic in Rochester.

Are you in the process of being evaluated for a transplant? or Are you on the Transplant List?
Please let me know how I can support you on your journey toward a transplant.

Which of the three MELD score types do I go with?

Maw90455, How r u doing. I just saw your diagnoses. I too had NASH/cirrhosis. LTP a little over 2yrs. I was just think about u.