Liver transplant - Let's support each other

My concerns at this moment is his coping skills. He very quite and keeps things inside. He sees a counselor once a week but I think it's just a formality for transplant. He's showing signs of wrekless behavior. We have been threw so much. I feel like he has given up or is acting out cause he's scared. I find myself being angry and mad because it's not acceptable at this point. His actions are hurting other and he doesn't understand why.

@sssklynn, I want to welcome you to Connect. I’m a transplant recipient, and have recently experienced the caregiver role for my adult son, for a different serious condition. Having had that experience, I want you to know I understand how you must be feeling about the uncertainty of what you and your son are experiencing.

What would you like to know about the liver transplant waiting and process? How can I help you as a caregiver?

I'm a Mother and caregiver for my adult Son that's waiting on liver transplant list.

@paula01, Welcome to Connect! It is exciting to read that you have already connected with @gerryp in a zoom meeting. And now we are all delighted that you have joined Connect, Mayo's online support community. Members come from all over the world to share their experiences and support each other.
I had my liver and kidney transplant in 2009 at Mayo Clinic in Rochester after being flown there from my home transplant center in Kentucky. I had Primary Sclerosing Cholangitis (PSC).

As a new member, I can understand feeling lost. Here is the link that will help you get started. Be sure to look at the section: How to Get Started to learn how to: Follow a group, post a message and discover your network. Learn how you can get the most out of Connect in this step-by-step guide.
About Connect: Who, What & Why About Connect
https://connect.mayoclinic.org/blog/about-connect/tab/aboutconnect/
Paula,
What brings you to Connect? Are you a recipient, a caregiver, or are you waiting for a transplant?

I got to know that my liver had a problem accidentally.
When I had visited my primary, after a blood work, they found that my white bloods are at a questionable level. He requested me to go the Emergency Dept. and have it taken care. After procedure, I was requested to stay in the hospital for further review, which I felt was unusual.
After the hospital stay for 4 days, I was informed that I have cirrhosis in the liver and the only option is to have it transplanted.
This started the whole process and the hospital oncologist called several hospitals to find out who could work on my liver problem. The University of Virginia Transplant called, albeit it was a 100 miles one way from place. After a whole year of testing and checking on my health conditions etc. I was placed on the waiting list and my MELD score was very low. The ranges from 6 to 40 based on the lab test. The higher the number, one is more likely to receive a liver from a deceased donor or when an organ becomes available. A living person could also donate part of their liver to the patient, since the liver is the only organ which grows to its full size within a month.
I had a full time job and the nature of my job is I do not have to visit any office building and I could work remotely.
During the process one has to understand that there a so many test needs to be conducted and the hepetologists prescribe medications accordingly. Meanwhile, the patient ages very slowly, the face becomes dull, and also start the body starts itching and there will be ascites will build up in your stomach. One will be gaining weight and has to go to the hospital to have the fluid drained from the body. It is really messy process. Please note until the MELD score gets to 18 to 25 you will have no chance of getting a liver. It is a catch 22 situation. One has to get really sick to get a liver and there is no guarantee once you get real sick, that there will be a liver waiting for you. Once one is really ill, the survival rate at that point onwards is around 3 months.
My recommendation, just take one day at a time. If you do have real estate properties, auto, Bank account please transfer them to a Living Trust. I was continuously working during this time.
Also, after 9 months or so, my face was changing and I could feel, it’s time to go. I did not feel bad at this point because I did this to myself. I used to party a lot and drink as much as I can and ended up in trouble. I cannot blame this on anyone one except me. People around me were really helpful without any judgment.
For my luck, the hospital called me on a December day that they found a match. Just could not believe it. Thought they got the wrong person. The important fact someone who wants to give his/her part of the liver to someone to live. The transplant surgery took place on the 17th of January 2019 and it is almost 4 years and 2 months. I am still around.
Later on the Hospital set up a meeting with the donor, who was anonymous in the beginning of the process. I just fell of my chair when I met my donor. She was a very young girl aged 23. Originally from Allentown.PA was working in Lynchburg VA at the Liberty U.
I am an emigrant to the USA and most people say USA has problems. Wrong. The best and most generous people are here right in the USA. I am in contact with her on a regular basis and also have met her family in PA. I consider myself as a lottery winner. Have Faith in yourself and the rest is up to God who helps people all the time.
My medications are for life and I take approximately 12 tablets in the morning and 6 in the evening. Please ensure you have good insurance since it may cost around easily a million dollars. That is the story in a nutshell. I still take one day at a time. One will never know what’s in store for tomorrow.

Hi Gerry. Just joined Arthur and I are trying to figure out this site was great to see you today on zoom. Love Paula

@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.

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.

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.