Liver transplant - Let's support each other

Where are you located? I'm in Fort White, FL near Lake City and have been feeling very alone.

I’m in Mississippi. Florida would be very nice!

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.

So happy to hear of your positive outcome ! I had my second liver transplant at Mayo in Phoenix in 2010( long story). I have no recollection of the first 3 weeks of a 6 week stay. It was never called a coma, but I believe it was. Wishing you continued success !

@joanaiken you have been through a lot since your transplant. I think when you trust your team it is very calming, and if you don’t trust them you should move on and find a team you can trust.
I hope everything will work with the MRCP and you won’t have to have an ERCP. I had no ideas what these were so I just googled them. What did we do before we had online resources like google to learn anything we want in a matter of seconds? My mother was brilliant and my sister and I have commented on how much she would hsve loved these capabilities.
JK

@contentandwell I under went 4 ERCPs post transplant and contracted pancreatitis 3 of those times. The first time I wasn't sedated enough and was fully awake and aware during the entire procedure. It was painful and I was gagging and choking the whole time. I have to undergo another ERCP on March 16th to either remove or replace my bile duct stent. I am a nervous wreck. Just getting over a bout of shingles.

I trust my Mayo liver team so much. I am a retired RN and have always been my own advocate and questioned treatments and conditions. With recent events, I have finally let go. Still paying attention and trusting them has decreased my stress levels so much. There may be issues with my bile ducts, so ERCP scheduled for March 18th. Sedation can be a wonderful thing ! LOL. My Mom has also expressed that she wish she had learned more about the internet. However she has low vision and I am her seeing eye daughter.

Wow. I am so sorry to hear that !!!!! Pancreatitis 3 times is 3 times too many. I have had several ERCPs and was given Propofol. I was out the whole time and no bad after effects. I also had shingles 1 year post 2nd liver transplant. How immunosuppressed are you ?

@khh. It sounds as if you are staying strong, that’s admirable. To me HE was the most miserable thing, I still get tears in my eyes when I remember the more severe episodes. I was very fortunate that I wasn’t working.

@beckyy39 as I mentioned the xifaxan kept me HE free for a long time too.

I hope the eval goes well and produces good results, and that you will update us. I feel such a bond with those of you going through the process and who have HE. I think only those of us who have “been there” can understand completely.
Hugs to both of you.
JK

are all related. No one has confirmed that as yet. Grhhhhh!