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.
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
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
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 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
They did tell me to be patient that the process should fix it but could take up to a year. Pancreatitis is a possible side effect they watch for after an ERCP. I'm sorry to hear you got it. Try and relax, trust your doctors, ask all the questions you want to ask even if you feel you've asked them before. If you are wondering about it, they can give you the information again until you feel your question has been answered. Although my leak is resolved, for now, I still have the stricture and they are working on widening it. I think I have 3 stints in the duct right now. Every time I go in they say, we will either, add to or remove but don't know what they are dealing with until they get in there. It can be a long process with lots of worry. I can tell you I'm feeling much better 9 months out but there were many times I was filled with worry and felt down about my recovery. It will get better.
Yes, I so relate! You definitely had a cacophony inside you, geez. You are so right, when you wake up from transplant, you know it is a new dawn, that the page has turned to a new chapter in your life. Then you and the medical team have to deal with "clean up on isle 5" until all stabilizes medically and mentally. I am sure your wife would be very proud of you for fighting for your life because it is not an easy journey. Now I see your picture on your speedboat and give you a grin and a thumbs up!
Thank you, Kandi! I am not the creator of the orchestra analogy, that came from a young doctor in Rochester in the first few months after my transplant. The vivid description stayed with me not only at that time but also 3 years ago when I had a major cancer surgery with significant remaining issues. I am cancer free at this point but have paid a high price for that. My orchestra has not yet found its tune but the transplant survived it all like a champion.
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
@kandidubrall, Happiness is hearing that you are 6 months, and starting to feel better!
I also had my transplant at Mayo Rochester and it took some time and blood pressure medicine changes until my blood pressure reached a satisfactory stable level. I did have some light headedness and dizziness several years ago that was remedied by a slight adjustment. I hope that you will let your transplant team know about your blood pressure problems and the episode where you passed out. Do you use the patient app?
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?
@lsheerin, I agree that the waiting is hard. And there is no way to predict how long your husband and you will be waiting as @ssapp1, @firecat, @katebw are discussion with you.
Since you are new to the transplant journey, I have located some discussions with some useful information for you from more patient/caregivers like yourself.
Connect
Connect
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Helpful
Hug
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
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1 ReactionI went to Mayo Clinic 1/7/23 had my transplant 1/23/23 very quickly, I received 3 offers hope this help
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1 ReactionThank you for sharing what a wonderful way to explain a transplant you are a great writer
Hello everyone,
I am having trouble with my blood pressure, even passed out , any one else, having B/P problems
Thank you
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
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Helpful -
Hug
1 ReactionHI @kandidubrall ,
They did tell me to be patient that the process should fix it but could take up to a year. Pancreatitis is a possible side effect they watch for after an ERCP. I'm sorry to hear you got it. Try and relax, trust your doctors, ask all the questions you want to ask even if you feel you've asked them before. If you are wondering about it, they can give you the information again until you feel your question has been answered. Although my leak is resolved, for now, I still have the stricture and they are working on widening it. I think I have 3 stints in the duct right now. Every time I go in they say, we will either, add to or remove but don't know what they are dealing with until they get in there. It can be a long process with lots of worry. I can tell you I'm feeling much better 9 months out but there were many times I was filled with worry and felt down about my recovery. It will get better.
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Like -
Helpful -
Hug
1 ReactionYes, I so relate! You definitely had a cacophony inside you, geez. You are so right, when you wake up from transplant, you know it is a new dawn, that the page has turned to a new chapter in your life. Then you and the medical team have to deal with "clean up on isle 5" until all stabilizes medically and mentally. I am sure your wife would be very proud of you for fighting for your life because it is not an easy journey. Now I see your picture on your speedboat and give you a grin and a thumbs up!
-
Like -
Helpful -
Hug
1 ReactionThank you, Kandi! I am not the creator of the orchestra analogy, that came from a young doctor in Rochester in the first few months after my transplant. The vivid description stayed with me not only at that time but also 3 years ago when I had a major cancer surgery with significant remaining issues. I am cancer free at this point but have paid a high price for that. My orchestra has not yet found its tune but the transplant survived it all like a champion.
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Like -
Helpful -
Hug
1 Reaction@kandidubrall, Happiness is hearing that you are 6 months, and starting to feel better!
I also had my transplant at Mayo Rochester and it took some time and blood pressure medicine changes until my blood pressure reached a satisfactory stable level. I did have some light headedness and dizziness several years ago that was remedied by a slight adjustment. I hope that you will let your transplant team know about your blood pressure problems and the episode where you passed out. Do you use the patient app?
@lsheerin, I agree that the waiting is hard. And there is no way to predict how long your husband and you will be waiting as @ssapp1, @firecat, @katebw are discussion with you.
Since you are new to the transplant journey, I have located some discussions with some useful information for you from more patient/caregivers like yourself.
- It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
- Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
- Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
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Transplant Blog Post
- Preparing for Transplant Surgery: Helpful Tips and Considerations
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/preparing-for-transplant-surgery-helpful-tips-and-considerations/
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