Liver transplant - Let's support each other

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.

@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.

@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

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 !

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.

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

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

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.

I’m trying to hold it together and yes I’ve had trouble with HE. I have been taking Xiphaxan for almost 3 years now. Unfortunately. This is only the tip of my iceberg. I don’t think anyone knows how I’m walking around. I guess I’m very stubborn. I can’t always respond to everyone bc I’m still working full time and I fall out when I get home. Most recently my AFP began elevating.
I just want to be evaluated by someone with more experience and knowledge than the NP I’m seeing. Thank you for your prayers!

@jeanne5009 I hope your HE continues to be that mild. Some people never have it at all so it probably will.
As I mentioned, for a very long time I just took xifaxan two times a day and that kept me HE free.
I hope your EDG and biopsy don’t unearth additional problems, and that your caretaker’s cyst will be taken care of easily. You and he have your hands full.
JK