Liver transplant - Let's support each other

3 years ago, I went in to have my gallbladder out and found out I was a Metavir 4. My mother does as well. I quit any social drinking, aleve,aspirin, everything that day. My meld varies but stays just below what is “required” for the list. However, the remainder of my findings are just about incompatible with life. I am a physician so I can realize the severity of my US, CT etc. I am 52 years old and I believe I could have many more years to help patients. I am a good pathologist. The NP that sees me down here looks at the MELD score and has not let me have a consult with a transplant surgeon, who I would think would be more likely to look at the totality of my findings. I have followed every letter of the law for 3 years with not even a consult. That is where I am now.

Welcome to Mayo Connect, @khh. I am a transplant recipient, and I am by no means an expert , except about t what I have personally experiececed. After I share some professional information that I sense that you are looking for, I will be happy to do what I can to be here for you.

I invite you to watch and learn in this recorded webinar -
DESCRIPTION
You need an organ transplant. Now what? This webinar features Mayo Clinic transplant experts David Douglas, M.D., chair of the Transplant Center at Mayo Clinic’s campus in Phoenix, Ariz., and Beverly Hansen, M.S.W., L.M.S.W., providing their best tips for navigating the journey to transplantation. This one hour session empowers patients to feel confident in their care decisions and transplant preparedness, from choosing a transplant center to setting up for a successful recovery.

- Transplant 101: Preparing for Your Journey
https://connect.mayoclinic.org/webinar/transplant-101-preparing-for-your-journey/
Karen, What brought you to this point of being interested in the transplant prossess? What has caused you to believe that you will need a liver transplant?
How can I help you?

Karen, I live in Las Vegas and had my Liver and Kidney transplant last June. This was after a misdiagnosis in 2 Las Vegas Hospitals before they found out I had NASH (non alcoholic liver disease) and entered an altered state. After that, I sent all my medical records to the Mayo in Phoenix and set up an appointment There I was diagnosed on my initial visit, that I needed transplants and the evaluation process began, it took 9 months to complete the evaluation with me being emergency transferred from Las Vegas to Phoenix as I was totally unaware of when nor how I got there. They stabilized me (3 days) completed the last test and then placed me on the transplant list. I received my transplant the next day and after a rough 3 Months ( I also had carotid artery surgery causing a minor stroke) , I feel better than I have in years. My best advice - follow the advice of your pre transplant coordinator EXACTLY. Listen to your Doctor and Nurse team. Never be afraid to ask your questions - write them down prior to your visit. Have all forms completed when you get there. Speak with your Social Worker about financial problems ( you will be expected to remain in the area for a couple of months. You will be overwhelmed with "paper" - save it all and read it prior to the transplant. There are numerous websites that provide extensive detail about success rates, transplant hospital ratings, etc. I went through numerous emotions with grief for the family that lost a loved one, to gratitude that the donated organs were life giving, to my wife (my Caregiver) who was heroic in helping me get through. I hope you have a quick an peaceful journey through the process and always reach out at the Mayo as you will never be alone. Ben

I would be interested in knowing the process I would need to go through, where I should go, where I have the best chances of receiving a liver transplant. I am somewhat familiar with many of the issues, but I need some real answers. I just pray it’s not too late.
Karen

@pharmcat I'm so happy for you! You're life has now transitioned! Keep in touch if you have any post transplant concerns or thoughts. We are all here for you 💚

I'm out patient and i have stayed there in the past

@racing212, Thanks for the quick reply, I didn't know if I should tag you in the information about evaluation. Hopefully soon, though.
So, maybe you will get some decent travel weather 🤞
Will you be there as an outpatient? Do you stay at the Gift of Life House?

@beckyy39,
For your evaluation appointment, one of the first things that I would advise you is to get a good sturdy notebook and a sturdy folder for storing all of the paperwork and information that you are going to collect before, during and after the evaluation. Also get a sturdy water bottle to carry with you. And comfortable shoes because you will be doing lots of walking.

With appointments at Mayo you will receive a schedule packet which will also tell you all about each procedure on your schedule. You will look at the appointment schedule and wonder how all of that can be possible in a span of a couple days. Trust me, it will!
I know that our members are going to have ideas of their own to help you along the way.

In the meantime here are some links I think you might want to look at.

-TransplantsTransplant Evaluation - What to expect
https://connect.mayoclinic.org/discussion/transplant-evaluation-what-to-expect/
- Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/getting-listed-for-transplant/https://connect.mayoclinic.org/page/transplant/
- Transplant Pages - https://connect.mayoclinic.org/page/transplant/ -is a part of Connect that is put together by the transplant staff. I consider it a "must read" and keep it in my favorites folder. If you scroll thru the newsfeed posts, you are going to find articles that will provide good reading about topics like -Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/getting-listed-for-transplant/https://connect.mayoclinic.org/page/transplant/
Becky, What is your biggest concern or question about your upcoming appointment? You can ask anything us anything because we want to support you and all transplant patients.

Rutine check up. Last one was in September. Im leaving on the 15th

@racing212,
Are you going for a routine checkup, or will you be going for transplant evaluation?