Want to connect with other post liver transplant patients

Hi @kandidubrall
I am almost 9 months post liver tx. My amazing brother was my live donor. I have been dealing with a bile duct leak and stricture issues since my transplant. I have had 5 ERCPs and will have my sixth in August. I was told this a common happening especially with live donors. For me the hardest part of the leak was the drains I had for about 8 weeks to make sure all the leaking fluid was being collected. But....eventually they do come out and they are doing an important job. My leak has since been resolved but they continue to work on the bile duct stricture. I've found the ERCP's to be an easy procedure when compared to all the other procedures we have endured for our health. Many other transplant recipients I have talked to who had leaks have told me to be patient, everything does resolve, it can just take awhile. My doctors said it could be a year before we have it resolved.

All of that being said, I am feeling really good. Healing takes time and lots of patience, which I lacked in the beginning. I had to make myself focus on rest, eating, exercising and taking my meds as my goals. When I felt exhaustion or fatigue I rested. When I got a cold or didn't feel well, I rested. I found for me, pushing too hard didn't make me heal faster. When I finally embraced my mantra, "I am Healing" I felt at peace about the obstacles and time it was taking to get better. If you have any specific questions, I am glad to help if I can.

Hang in there!
Erika @erikaclark

To bile duct cancer whole liver transplants. April 2022 at Mayo Phoenix I got my transplant. All was well until December 2022. My liver enzymes were spiking every 4 to 5 weeks. After 3 biopsies, 2 ultra sounds, 2 MRIs and weekly blood draws my liver is whole and well . However I keep getting checked for pancreatic cancer which so far is not evident and now I am being watched for a return of bile duct cancer. Because my bile ducts are thickening the Mayo surgeon who put in my stent thinks it is a return of bile duct cancer but the transplant team is more confident it is a scarring byproduct if the pretransplant radiation.
I don't know if your bile duct issue is leaking or thickening, if it is thickening then maybe it is a result of radiation scarring.
As for me, everything suspected so far keeps getting disproved by the follow up tests. I have been referred to as "an anomaly". Given my whole life I suspect I have always been an anomaly. So trust Mayo's eagle eye and persistence to find answers for your health and add humor if possible. It helps.
Hope this helps, Barbara aka ajdo129

Hi Everyone,
God Bless you all. I wish you all great health. My husband is waiting for a liver transplant. He will be going to Tampa General. I do have a question. I know everyone is different, but can I ask how long you all had to wait for "the call" and how long you had to get to the hospital? I appreciate any comments.

@lsheerin i was on the list for 2 years. Part of that was because I was listed at a smaller hospital. I transferred to UC Health in Denver around the 2 year mark. Then received a transplant within a couple of months. I got the call at 6 pm and had to be at the hospital by 9 pm. Got my transplant around midnight.

Thank you! The info is helpful. I’m hoping Tampa General is sooner than 2 years. My husband has only been on the list for a couple of weeks, but it’s torture. Getting on the list was the worst part. I do feel better that he is on the list. I am so glad you got your transplant and I hope you are doing well. How are you feeling?

Think of your organs as a fine tuned orchestra. Then one instrument(the liver) starts failing and continues to fail. The rest of the orchestra make adjustments to compensate for the failing musician, as the show(your life) must go on. The role of the different musicians(your organs) changes. Then suddenly the new musician(your new liver) arrives feeling good but not quite 100% well. The readjustment of the orchestra continues and will continue to do so until harmony is achieved. Your patience is essential, your body has gone through a big trauma. Think about it, an organ removed, another one put in its place trying to function in a different orchestra? Tough order! It does eventually all fall into place. Be compliant with what your transplant team tells you to do, they truly DO know better. Go help your orchestra make beautiful music!

Hello,
In my case wait time was determined by my Meld score. My donor was brain dead, so when I got the call I was told to pack up and drive safely. They new I lived 3 1/2 hours away.
Be patient and God will bless you as he did me😊

Thank you for your reply. When the waiting seems endless...it's only been 2 weeks...it's reassuring to hear people's success stories. Glad you are doing well.

I can relate to the getting on the list was the hardest part. For me, it all occurred within one year: a sudden diagnosis and very sick in March, I was evaluated by the MassGeneral liver team in Aug, listed Sept 29, transplanted Oct. 29. I’m a 2 hour drive from this hospital and I was given 2.5 hours to get there! I packed a bag of way too much stuff in 2 minutes and flew out the door. It would be a dramatic and interesting story if it happened to someone else! I am feeling very well now, 18 months later. Waiting is hard, but so worth it.

Might I ask what your current Meld score is? Mine was 25 for weeks then shot up to 29 after a heart catherization. I also needed a kidney and the dye from the catherization shut down my kidneys after a couple days. Weeks later I was transplanted. See, lemonade does come from lemons 🙂