Liver transplant - Let's support each other

Good Morning, @mikesealy. I am reaching across the miles 0n this rainy morning from central Kentucky to welcome you to the mayo Clinic Connect Liver Transplant support group.
I was diagnosed with a progressive liver disease 20ish years ago and so I feel safe to say that I know what you and the family member must be experiencing now. I wish that Connect would have been available for me because I didn't know anyone with any transplant experience that I could talk to.
I started my 'journey' in Kentucky and then was transferred to Mayo Rochester in early 2009 where I had a successful liver and kidney transplant in April 2009. The journey was long and difficult, and I always had the support of my dear husband, my family and friends, and wonderful medical teams.
Mike, You are likely facing the wildest roller coaster ride of your life, so hang on as you support your loved one. Are you the caregiver? Possible donor? Do you have questions? How can I help you to support your family member?

We have a family member diagnosed as a liver transplant patient.

@jlvr, I'm thinking about you. I hope that the doctors were able to provide the answers and treatment that he needs.🤍

Jlvr, How about you? How are you managing thru all of this? Do you live nearby so you can visit your husband?

@darring1, Yes, it is a long process, but your doctors are going to be monitoring your condition, and providing the medical care along the way.

Here are some pictures and stories that members have shared -
-Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/liver-support-group/
-Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/liver-support-group/
Remember that you are among friends here and need not be alone. We are here anytime for any questions.

Thanks for the response! I hope it works out for you with a good outcome.

I am a patient that is waiting on my health insurance company to finish processing my paperwork so that I can begin the process of going through the hospital testing and assessment to try to get on the list. Hearing how long the whole process takes to hopefully get a liver transplant, I was curious as to what sickness I may encounter along the way.

@darring1 the ways in which I was sick waiting for my transplant at first included hepatic encephalopathy. This doesn’t happen to everyone. When this occurred to me I would become confused and belligerent which is the opposite of my normal self. I’d wake up this way and family would call 911 and I’d be admitted to the hospital for several days. After a while it stopped but looking back I had some low level confusion with trouble concentrating. I also had recurrent fevers of unknown origin which landed me in the hospital a few times when fevers were high and persistent. They could never find an infection source- a hematologist thought it was some internal process of hematolozation. Something like that. I was often very tired, I was very jaundiced, and often EXTREMELY itchy which is common. I also had very shaky hands from end stage liver disease. I had good days and bad days- I did get breaks from the worst symptoms and sometimes tons of energy. Didn’t develop ascities as many do but I had edema all over my body (anascara) and my legs and feet were horribly swollen. I took a lot of medications that contributed to symptoms- the worst one being lactulose which helps keep ammonia low (when it’s high it caused hepatic encephalopathy)- it does this by making you empty your bowels significantly- because of my episodes I was given a high dose which led to at least 5-6 bowel movements each day. Gross and inconvenient. I was not able to drive and I didn’t work for months. (I am a social worker). About a month before my transplant I had a consult with a nephrologist who told me that post transplant I wouldn’t be yellow or puffy or sick and I absolutely didn’t believe him. I couldn’t remember normal.

@darring1, Good morning and Welcome!
I expect that others will want to join this conversation, in the meantime I have caught myself using the terms like, 'getting sicker' and 'ill' to indicate the increasing side effects/symptoms that accompany liver failure and cirrhosis. Maybe someone will share a better term.

To my understanding, there are symptoms of liver disease that are common for all liver diseases. Perhaps you have heard of some like: tiredness and fatigue, nausea, ascites (accumulation of fluid in abdomen), unintended weight loss or difficulty gaining weight, fevers, portal hypertension...

Some patients have few while others have enough to become hospitalized prior to transplant. I have been told that everyone responds differently, and if you have a several patients with the same diagnoses liver disease, each one will have a different combination of symptoms.

I want to encourage you to scroll back to Feb 1, where you can meet and read what @katebw, @katebw, @maw90455, and others have/are currently experiencing. And you can easily ask a question to anyone by replying - or by using their @name in your comment.

@darring1 - What brings you to this conversation -Are you a patient or a caregiver? How can I be of help to you?

A number of people have commented on getting sicker over time as they waited on the list. Anyone willing to share what they got sicker with.

All I can say is thank you