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Liver transplant - Let's support each other
Transplants | Last Active: 6 days ago | Replies (1606)Comment receiving replies
I've been hospitalized twice for HE but haven't had further issues once I was put on xifaxan 2 x daily and lactulose. I wasn't aware it was happening and was driving in that condition. When I had coworkers, clients, and my son notice strange behavior, I was sent to the ER and my ammonia level was near 90. I didn't even know my name, address, or even that I was at the hospital...I have never been so scared, so my heart goes out to you. Fortunately my eval visit starts on March 10 and it is about 100 miles to Mayo Clinic in Jacksonville from where I live so my 17 year old son (caregiver) and I will be in a hotel that whole time and I hope the process is smooth...have had a very hard week.
Replies to "I've been hospitalized twice for HE but haven't had further issues once I was put on..."
@becky39, In advance of your evaluation appointment, and since you will be at Mayo JAX, here is something to consider..if you have time.
Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida Tuesdays 11:00 - 12:-00.
https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group/
Becky, Did you get your appointment schedule yet? Do you have any questions about it?
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Becky, I also had HE, misdiagnosed for one year, before I reached out to the MAYO in Phoenix. My Ammonia Level was in the high 200's.I also took 2 Xifaxan tablets daily plus lactulose. It worked for almost one year, as I was working with the MAYO to get on the transplant list. At the end of the process it became serious, as I needed a 300 mile emergency transfer and as I was in the Mayo system, they insisted that I would be transferred to them. I was very fortunate in that after 9 months of testing, I was placed on the list and received my transplants (liver and kidney) in less than 24 hours. I did have to stay very near for 2 months. Take HE very seriously (as I got into a position where I was in a coma like state) and start the process for a transplant approval. Look at hospitals that have the best success rates, better waiting periods, etc.. The first few months were rough (mainly because of my kidney), however now after 8 months, I feel better than I have in years. I know it's scary, however speak with your transplant coordinators,Doctors, Social Workers. etc., You will need a Team and they all will be there to explain in detail, support you and do whatever helps you. Follow their instructions - Exactly - and know there are many others that have been down the same road.