Liver transplant - Let's support each other

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.

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Hi there,

I just stumbled on this thread. I am almost 1 year post liver transplant (Dec 7). I am in London, Ontario, Canada. Since I have had a profound change in my life, I feel the need to give back. There are NO in person live support groups anywhere in my area. My wife and I have decided to develope a group to offer to the people affected by this illness.

We are going to run it monthly, at the hospital on clinic days, so people can wander in casually when they are already at the hospital. Initially, it will be an open group with no set structure and will be consumer driven.

I am curious to hear what your group looks like and how it is being received

Feel free to contact me anytime

All the best

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I am 15 months post TX at London UHSC. Good to hear you are trying to get something going there. The peer support is limited in our area but certainly needed. If I wasn't 5 hours away I'd come on by. Maybe next time I need to visit in person.

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I done introduced myself and told my story. Maybe I didn’t do it right.🤷‍♀️

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@melissa0919 I think what @rosemarya was asking was if there is anything else you want to share, things others in this group may support you about. There is never any pressure to share more than you want to. I’ve found this to be very helpful to get reality checks when things are hard. For instance I recently had a scare about rejection or bile ducts as my numbers have been rising, and I reached out to this group to see if anyone had a similar experience and how they coped.
I’m sure you’re sick of all of this - sick of hospitals even though it sounds like this is the place for you to be. I’m praying for you and thinking of you, offering strength for this journey. 💗

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Thank you. It is a lot to cope with. I figured once I got my liver and went through the initial recovery I would be ok. But that’s not the case at all. If there is anyone on here that has went through rejection please connect with me. I am extremely overwhelmed, because like I said I figured I would be better after recovering the initial part.

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I hope that today brings some uplifting news to you about your current status. I am aware of how overwhelming this is for you. And I know how frightening it is when our precious organ is at risk. I imagine, too, that the medical terms and activities are confusing as well. I know it was for me. If you are feeling up-to-it, try to engage in conversation with your nurses, as doctors can be quick in /quick out due to their schedule. Are you at your transplant hospital?

@rickherman @silverwoman @gaylea1 @hdillon7 @ajdo129 @gerryp
I want to invite you to visit this conversation and meet @melissa0919 who is in hospital with signs of rejection of her recently transplanted liver. I know that she would appreciate your expressions of hope and encouragement during this difficult time, also Do you have an related experience to share? Have you dealt with rejection?

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I hope that today brings some uplifting news to you about your current status. I am aware of how overwhelming this is for you. And I know how frightening it is when our precious organ is at risk. I imagine, too, that the medical terms and activities are confusing as well. I know it was for me. If you are feeling up-to-it, try to engage in conversation with your nurses, as doctors can be quick in /quick out due to their schedule. Are you at your transplant hospital?

@rickherman @silverwoman @gaylea1 @hdillon7 @ajdo129 @gerryp
I want to invite you to visit this conversation and meet @melissa0919 who is in hospital with signs of rejection of her recently transplanted liver. I know that she would appreciate your expressions of hope and encouragement during this difficult time, also Do you have an related experience to share? Have you dealt with rejection?

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