Wait time pre-transplant?

I had liver transplant. Mayo rochester. After my PCP referred, it took 3 months for initial consultation. Then met with two doctors and decision made I should have full evaluation by department to see if I was eligible. That is when I was assigned Nurse coordinator and the appointment department called and a full week evaluation was set up with numerous departments. I had to stay in rochester for that because long days at clinic going through evaluation. You are required to have a care provider when transplanted who commits to staying with you through recovery. That person was with me for initial evaluation. At end of week you meet with assigned doctor to go over all evaluation. If appropriate at that time, your dr takes your case to the full committee who meets weekly and the decision will be made if you are accepted for transplant. That happened the week after my evaluation was
completed. From there you start frequent monitoring and testing to monitor status. When you hit certain status you are "ACTIVATED"on the UNOS list for donor if doing deceased donor. That basically means you have done all required procedures and are ready if donor becomes available. You wait for suitable donor based on your place on list. Watch your MELD score closely, which is measure of various blood levels. At Rochester they did not restrict distance. You just have to plan to be there within certain hour timeline. Can be approximately 8 hours or so. They tell you. You have to be ready and stay close to phone for call when it comes! Best of luck.

Wow, very detailed response, thank you so much. Your response means more than you know.

Do you mind me asking what your MELD score was when you were selected?

My transplant was 15 years ago at Mayo Rochester, I remember all (or most) of the questions and concerns that I had when I was a pre- transplant patient 15 years ago - because each and every new patient has the same questions and concerns. I never get tired of meeting and sharing information that I feel might be helpful.
Liver allocation is a complex process, and MELD score is just one of the variables doctors use to determine who receives the next available liver. Here is an article that was posted on the Mayo Connect Transplant Newsfeed Blog
- Liver Transplantation: Understanding the MELD Score
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplantation-understanding-the-meld-score/
I have been busy with a broken wrist recovery and occupational therapy. I'm trying to get caught up with all of you. My transplanted liver and kidney are happy, and that makes me and my doctors happy, too. How about you?
@mkhogan, You have a great memory! As I read your summary of the pre-transplant time, I could easily visualize each step in the process from my pre-transplant experience 15 years ago. When patients like you share, everyone benefits.

@yeknich, Welcome to Connect! How long ago was your liver transplant? How are you doing?

@lonnecka, Have you been to Mayo for your evaluation?

@glover, Dave, You are already 6 months out from liver transplant! How are you getting along with adjusting to your new normal? Do you have any questions that I can help you with?

@jamesduaiswamy, It's been a while since I've seen any update. How are you doing these days?

Hi, @parrot53. What's happening in your liver world?

Pull up a chair. Lets talk!

Ty. I was removed from unos due to last minute illness issues. I was at 4 months on list after 10 months of pre transplant consultations and vetting.

Very true. MELD isn't only consideration, but something they refer upon strongly with possible added exceptions in situations. My understanding is mayo developed the MELD measurement which bus now a standard the transplant world but as said, other things are considered and prioritizedvin your health status. They will tell you to be ready for ups and downs, but hang in there with them.
They are an amazing team of professionals!. Even though they can make you angry at times😊

Ty. Meld was 31 and dropped to 23. I was removed from unos in no uncertain terms by mayo at literally last minute. Was told they do not operate for liver transplant with the newly discovered issues. Am seeking a more confident / experienced team for this. University of Miami was advised as familiar with my type case and has experience. Going to Miami tomorrow for Tuesday evaluations and registration as patient.

My husband was on the transplant list in Dallas. We relocated to Florida & as of now, he has an appointment for an evaluation at Mayo in Jacksonville. His MELD began at 37 but has since dropped to 16.

Wishing & praying the best of luck to you & your family.

You're in good hands there. Even though it was emotionally devastating, I don't question their decision. It was correct according to my research and 8 months of working with the team there. I need more experience with a rare and difficult surgery, which they have at Miami. Your wait should not be long. Good luck.

Thanks for reaching out. It's officially 6 months next week. Unbelievable! I become more grateful daily.

I'm working on the new normal thing. I'm trying to figure out what's going to be "new" and what can be improved. A little more patience on my behalf will work wonders. 😄

Rosemary,
Hoping your recovery and PT are going well and that wrist is beginning to feel normal again.
Thank you so much for catching up. I have been so fortunate with the care I receive at Mayo Jacksonville. My tumor was ablated in 22 and I have had good liver function and no tumor recurrence for two years. As a result I have been taken off the transplant list and will continue to be monitored four times a year for the next year and then we will reevaluate, I am aware that there is a possibility of new HCC due to the cirrhosis but I am feeling very grateful for this opportunity to be well.
Everyone here on Connect has been so supportive and helpful. I am so thankful to have you all.
Be well and happy.
Susan