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

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.

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!

I am three years post transplant I was wondering if anyone had stomach bowel issues ? I am on prograf. I recently developed diabetes never had bad A1C counts but the month my magnesium went to 1.2 my a1c was 10. I have been on insulin shots for a month but I am wondering if I can get off them. Anybody have any similar experience. thank you

Thank you for sharing, I have had bile duct leak, right after my transplant, and stricture, got pancreatitis, I have had 4 ERCP since January, on my fourth got pancreatitis again after that still have structure no improvement very nervous, did they tell you this would fix everything

Thank you for sharing what a wonderful way to explain a transplant you are a great writer

Hi
I am in the being of my 6th month, Yes I have had abdominal distention and bloating, burping, nausea , difficult eating, finally starting to get better, but I drink a protein drink now which has help instead of eating slow process

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?