Liver transplant - Let's support each other

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

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.

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

@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?

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.

@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?

Hello Rosemary
I am trying to catch up this was sent to my spam. I had non-alcoholic steatohepatitis (NASH) with a trans jugular intrahepatic portosystemic shunt (TIPS) and an inferior vena cava (IVC) filter procedures done at a different transplant center. There I was informed after the (IVC) procedure that their transplant committee voted not list me with United Network for Organ Sharing (UNOS) for liver transplant because I was too anxious and depressed. I was told in a year to call back and I could possibly be considered for revaluation then they walked out of the room not to be heard from again. This infuriated my gastroenterologist in Tallahassee FL who had diagnosed the (NASH) in 1992. He called Mayo Jax and arranged an appointment for me at the Mayo Clinic Liver Transplant Program. I was accepted into program 2018 and transplanted at Mayo Jax 3 year ago Valentine’s Day 2020. Covid started so all support groups stopped my husband was lucky a Mayo social worker took him out of my ICU room to the Second Chance Support Group of Jacksonville FL meeting for pre and post liver and kidney transplants at Mayo clinic. Mayo after closing group meetings started the zoom meeting every Tuesday where I have received a lot of support and help from members in the group. I would like to try and give back helping others from my journey of having no hope new hope not on the (UNOS) list informed when admitted into Mayo Hospital Feb. 7th by my clinic surgeon I would not go home becoming listed and transplanted within a week by the grace of God. Gerry said something about this group last week during the zoom meeting so we thought we would give it a try.
Paula