Liver transplant - Let's support each other

I was transplanted at Mayo Jax about 1 year ago. The place is amazing. I relocated from Boston as my odds for transplant were much better here. The facilities here are relatively new (about 25 years) and immaculate. The campus is beautiful, with gardens, art installations, fountains - it embodies the Mayo philosophy of healing the “whole patient”. All patient rooms are single rooms and state of the art. I am so grateful to the care I received that I now volunteer on the Transplant floor each Wednesday as a nurse’s aide.
But my wait was complicated. I was treated at Mass General for over a year before being advised to seek treatment here in Jax. It took me just about 2 years from diagnosis to transplant - but my condition was very rare, so there were no statistics or protocol at UNOS for prioritizing patients with my condition. There are lots of local housing options here, and I found that my health improved while I waited simply by being in the FL sunshine. I would encourage you to join the weekly support group calls (each Tues at 11am via Zoom). You will meet many post & pre patients who have been down this road and can help allay your fears and answer any questions you might have about their experiences and treatment for similar condition as yours. Many patients get listed and receive the call not long after. That was not my experience. Between Mass Gen and Mayo I received 7 calls. They come any time of the day or night, so keep your phone with you and answer every unknown caller. My 7th call came at 1am on a Sunday night - and the 7th was the charm. Happy to speak privately with you or meet you and your caregiver when you arrive in Jax. We have a very large and supportive community here - so you won’t be alone.

@rshangle, Welcome to Connect. I just finished reading your earlier post, and I want to reach out and to let you know that your medical complications are a reality for many members who have liver conditions. I want to commend you for the powerful message of strength and determination that you exhibited by your words, "Transplant is not ruled out. I just work the plan as the doc said, as others have said here." You are among friends, and we do 'get it' because anyone we are/or have experienced the same ugly symptoms.

I never had encephalopathy. but I know from the experiences that others have shared, that it is a very frightening condition. Here are some groups where members have shared their experiences with hepatic encephalopathy:

-I have questions about Hepatic Encephalopathy
https://connect.mayoclinic.org/group/transplants/
and
Hepatic Encephalopathy is discussed by members in the beginning pages of this group:
-Liver pre-transplant question
https://connect.mayoclinic.org/discussion/liver-pre-transplant-question/
@rshangle, Are you being considered for a transplant? Are you a patient at MAyo? How can we support you as you?

Great. I’m glad you had a good experience and now volunteering. I’ll be there April 17-21. I have Y90 mapping on Monday and Ablation on Tuesday. We will be staying at Hope lodge. They had all but one night on the 18th. Hopefully that it will become available that night also. We would love to meet you.

I am a post liver transplant patient. Surgery took place on the1/17/19
I have been reading that drinking lemon juice will be good for a post liver patient.
Any opionions please?

I went thru the evaluation in September of 2022 and was put on the list the day before Thanksgiving once all of my vaccines and testing complete. I got “the call” on December 13th at 10:13pm (I will never forget). Rushed up to mayo(although they said to relax and take a breather) and checked in at the ER. They take you and your caretaker to preop. You get your iv and Covid test and bloodwork. My donor was not even yet deceased (waiting on inevitable heart failure) but it was coming. I had the surgery that day once everyone reviewed the donor liver. I was blessed to not have a dry run. I will tell you that you will seat yourself on the operating table. Prepare for that. I wasn’t prepared and it shook me. Surgery was 6 hours long but my caretakers were texted updates the entire way. I was in icu for a little bit but quickly transferred to the transplant floor. I had Cirrohsis and no symptoms until March of last year. Then…boom… meld score of 26. I was not sick per normal standards, but my liver was quickly failing. I could explain this for hours. But if you have questions, I’m happy to answer them based upon my experience. I pray for the best for you. This is a miracle.

Dr yataco is on all of my lab work requests, but I never met her. Mayo has a very large team. It’s great.

Hello! I am 16 weeks post transplant and have been actively searching for support groups to help me understand my new way of life. The mantra I use daily is " I am healing". (I tend to stress about getting better and think I should be doing more when I can't do as much as I would like). This is my way of reminding myself that my job right now is to listen to my body.
A little information about my journey: I had a disease call PLD (Polycystic Liver Disease) that became symptomatic. I was working right up to the time of transplant but exhausted and in pain and getting worse each day. I was not sure how much longer I could complete my daily tasks at work. My MELD score was low, therefore my best option was a live donor. All three of my adult sons went through the evaluation process and were not able to donate. This process took over a year from when they told me my only course of action was a transplant. My brother eventually became my donor and we went into surgery at Stanford on November 28, 2022. He is doing very well after selflessly putting himself through major surgery for me. They were able to accomplish the removal laparoscopically which made his recovery a bit easier. Interesting side note: my liver weighed over 20 lbs once they removed it. I am told by docs and those around me I am doing really well. I am dealing with bile duct issues and go in for another ERCP at the end of the month. Hopefully my leak has resolved and they can simply take out this last stent. If not, they will put in another. I am grateful for my doctors and the liver transplant team. I look forward to looking for posts about returning to work, lowering my Prograf dosage, managing set backs and emotions and managing my expectations while learning more about post transplant life.
Thanks in advance for simply being there to walk through this experience with me and others.

I was transplanted at Mayo Jax about 1 year ago. The place is amazing. I relocated from Boston as my odds for transplant were much better here. The facilities here are relatively new (about 25 years) and immaculate. The campus is beautiful, with gardens, art installations, fountains - it embodies the Mayo philosophy of healing the “whole patient”. All patient rooms are single rooms and state of the art. I am so grateful to the care I received that I now volunteer on the Transplant floor each Wednesday as a nurse’s aide.
But my wait was complicated. I was treated at Mass General for over a year before being advised to seek treatment here in Jax. It took me just about 2 years from diagnosis to transplant - but my condition was very rare, so there were no statistics or protocol at UNOS for prioritizing patients with my condition. There are lots of local housing options here, and I found that my health improved while I waited simply by being in the FL sunshine. I would encourage you to join the weekly support group calls (each Tues at 11am via Zoom). You will meet many post & pre patients who have been down this road and can help allay your fears and answer any questions you might have about their experiences and treatment for similar condition as yours. Many patients get listed and receive the call not long after. That was not my experience. Between Mass Gen and Mayo I received 7 calls. They come any time of the day or night, so keep your phone with you and answer every unknown caller. My 7th call came at 1am on a Sunday night - and the 7th was the charm. Happy to speak privately with you or meet you and your caregiver when you arrive in Jax. We have a very large and supportive community here - so you won’t be alone.

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.