Liver transplant - Let's support each other

@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.

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.

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

@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.

@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?

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

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?

My doctor told me early on, yes you are sick and it sounds crazy, but you're not sick enough for transplant yet. My meld score was in the upper teens. I then had verifies bleed in my esophagus that had to be tied because of limited flow through my liver due to cirrhosis. Them my portal vein started leaking into my body cavity. At first having a perisenthesis (body cavity pumped out) every few months. That got worse as the months went by. In the mean time my liver was taking out my kidneys. My meld score climbed into the low to mid 20's. For the last 2 1/2 before transplant I was being pumped Monday and Friday averaging 12+- liters of fluid per week. On Tuesday, Thursday and Saturday I was on dialysis. My meld score climbed to 25. One of the last tests before transplant was a heart catherization. Thr doctor told me the contrast needed was hard on kidneys. I told him go ahead, I'm going to die anyway. 2 days later my kidneys shut down. What sounds terrible turned into a blessing in disguise. My meld score shot up to 29. 7 weeks later I received a joint liver and kidney transplant. 13 1/2 hours under the knife 10 units of blood later hear I am.
Good luck to you on your new voyage ahead!

Maw, how did your appointment go on Monday.

The Rehabilitation Facility is less that 10 minutes away. John has his 2 month follow up appt with Transplant Coordinator and a surgeon yesterday. Doctor is pleased with his heart, lungs, kidneys and liver functions. His only concern is John not eating. He explained to John that it is up to him to eat. John is currently getting his nutrition from the feeding tube hooked up for 18 hrs a day. The doctor would like to see John reduce the time to 12 Hrs and finally off the tube. The doctor says its up to John to eat, maybe start with soft foods, and since John's hands are tremoring, I should help him eat until he is strong enough to feed himself. He has to eat.
John was very alert during his appointments and today he was very active with his occupational and physical therapy sessions. I was there for training to be able to help John when he gets home.