Liver transplant - Let's support each other

@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?

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

@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 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

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

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?

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.

Please read my reply to Rosemary. I have not seen a physician, nor have I been provided with a social worker. I have followed everything perfectly for 3 years so far and I still haven’t received a consult. And I have been requesting that from my NP. I would think that since I am still a working physician, she would at least let me have a consult. The findings in my scans are horrible including a liver density and a reverse flowing inferior vena cava. I have plenty of other terrible findings but those are not compatible with life that is the point I am at.
Karen

@joanaiken I hope the biopsy went well. Tests like that can be so unnerving.

@jeanne5009 With a MELD of just 8, how severe are your HE episodes? Have any of them caused you to be inpatient?

@racing212 I too had HE a number of times that landed me in the hospital for two or three days. I have heard of people being in the hospital for much longer periods with HE though. In retrospect, I wish I had been transferred to my transplant hospital in Boston, rather than being in the local hospital here in southern NH. They were not very knowledgeable about HE and the treatment I had there was deplorable.
HE is scary and depressing. I consider my mind to be my best asset and to be so confused and irrational was very upsetting. I could feel them coming on and always thought if I just resisted enough I would not get one, but of course I did.

@beckyy39 If you have two willing donors who may be a match can they get tested and possibly have a transplant elsewhere? Having a living donor would certainly quicken the process.

@khh I too welcome you to Connect. I am very surprised that you have not seen a doctor. When I was to have my first appointment with a hepatologist they suggested that I could see her NP sooner than I could see her but I said that I wanted to be seen by a doctor and I was. On every appointment while I was pre-transplant I was seen first by the NP and then the doctor came in. Is there a different transplant center close enough to you that you could switch? For me, not seeing a doctor in all of that time would not be acceptable. If you go to the SRTR database it lists all of the transplant hospitals in the country. I had my transplant at Mass General in Boston and can not say enough good about them. They were wonderful and continue to be post-transplant.
JK

Thank you for asking about the biopsy. The procedure went well. The results showed no acute rejection, but the beginning of a chronic mild rejection. Cellcept was added to my medication regime. Tomorrow I will have repeat labs and an MRCP without contrast. There may be some issues with the bile ducts. If this exam is not conclusive, t may be followed by an ERCP. Post second liver tx I had this procedure twice to place stents for bile duct stricture due to scar tissue. All in all, taking this a day at a time. I trust my team at Mayo Phoenix.