Liver transplant - Let's support each other

Thanks. I did get approved this morning. I received the information as you said on Er.

I need the tumor treatment with ablation soon. I hope to stay at Hope Lodge. It’s a new building and get inside.

We are looking at condos within 15 min drive.

We hope to be living in Jacksonville in July.
Thanks for the information.
I have never seen the hospital rooms. Were they nice? Did your caregiver stay with you?
How was the care? Did you feel they neglected you? I’ve been in hospitals and I push the call button and had them say, were busy we will see you when we can. I hope Mayo Jax is better. I’ve been looking for room pictures but could not find.

Hello all. I am mid Third day of Evaluation for liver transplant at Mayo in Rochester. It’s been kind of overwhelming but also amazing. The drs and all medical staff have been so thorough and compassionate. I feel very good about being here. Looking forward to sharing my journey here!

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.

Hi - Rick - age 49 - MELD score = 19 - alcohol abstinent - major co-morbidity = Type 2 Diabetes. Transplant is not ruled out. I just work the plan as the doc said, as others have said here.

My symptoms, which have progressed over the last 6-9 months:
-- itching. Big time. I'm not jaundiced but the itching can be intolerable unless I'm actively moisturizing
If I scratch myself in my sleep (see: itching) the odds are better than average I'll end up with some sort of skin breakage or rash, which leads us to...

-- platelet anemia (Thrombocytopenia ) = difficulty clotting.
This was the first symptom I had that got me into the hospital, actually - I had a minor nosebleed that absolutely would not stop. This is a function of the enlarged spleen that goes hand-in-hand with my cirrhosis

-- red cell anemia - this nowhere near critical, but this and the Thrombocytopenia are watched closely like everything else. I've had transfusions but they're not routine.

-- infections are more frequent than the Old Normal. These could be skin breaks, or could be due the stuff going on in the blood/spleen, or both or other

-- ammonia levels are rising... leading to...

These physical things are a pain in the you know what, but they aren't what's really rocking my world right now except in terms of how they drive encephalopathy.

Someone else mentioned they couldn't drive a car when it was bad. That sounds about right re: my case.

Extreme difficult focusing, falling asleep, (ha) getting up, the usual. Lethargy.

Over the holidays I pretty much lost it and wound up in a behavioral health unit getting my psych meds adjusted under observation.

It was then someone pointed out that depression was fairly common / can worsen with encephalopathy.

I do my best to combat the symptoms to take all my meds, drink the prescribed amount of water ( which is less than I want), avoid artificial sweeteners (the old bad ones; Stevia is ok), radically limit carbs and sodium, minimize protein as best I can.

@mshellmayo, Good Morning! and Welcome to Connect.
I am short on time, and hope to get back to this support group later today, but I just HAD to comment to you because 14 years ago this week, I was WHERE you are NOW! At Mayo Rochester undergoing my evaluation for a transplant. Everything you have said is exactly what I experienced.
I send my hopes and am here to support and answer and questions that you might have. And I try to be available if you just want to talk. Looking forward to accompanying you on your journey. 🤍

I re-read this and realized I sounded pretty Debbie Downer. Sorry about that, it really wasn't the intent.

Do what the doctors say, and that's about what you can do.

You're working with Mayo - who could ask for more? rds

@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?

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.

This is GerryP’s wife. I did stay in the room the first two nights after transplant so that I could reassure him all was well when he awoke, and re-orient him to the room, as he was experiencing drug disorientation. The nurses are incredibly responsive, particularly in the early post-transplant days, and they work as a big team, in that if they hear you beeping and your nurse is busy, they pop in. Once he was more oriented, I started going home at night. There is a lot you need to learn and be responsible for in the beginning months, and you need to be rested. Mayo was great with patient education, I felt supported in my learning, and had a team to reach out to for questions. Try to find an apt close by, as in the beginning you go back and forth a lot. We are by the beach in Ponte Vedra, and it’s an easy drive. Like Gerry mentioned, we are happy to answer any and all questions offline.

Thank you
We are looking for a place to live. Apartments are so expensive. We have two pets we would like to bring with us.
So it’s either a home or condo first level. It needs to be under 300 thousand. Most places like that are more near south Jacksonville closer to St. John’s river. That they say is a 15 -20 minute driver.
If you got any information on something nearby let me know. Thanks again