1. < Transplants

Hepatic ductopenia and vanishing bile duct syndrome: Anyone?

Posted by beracha @beracha, Jan 12 7:46am

Hope everyone is having a good day. I am post OLT and after 25 yrs had acute rejection which is now chronic rejection. I have never talked to anyone about ductopenia. If anyone has been diagnosed please respond to what I can expect my path will be. Thank you.

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hello1234 | @hello1234 | Jan 13 12:30pm

Hi @beracha
It's very nice to meet you. I am hopeful that a liver transplant patient will respond to your question about ductopenia shortly.
In the meantime, I have a question regarding your acute rejection after 25 years. Was there a change in your immune suppression meds or dosage that brought this on after 25 years? Are you currently taking Tacrolimis and Mycophenolate to treat the chronic rejection or what is the treatment plan?
Thank you so much for sharing your story.

REPLY
2 replies
beracha | @beracha | Jan 14 4:40am
In reply to @hello1234 "Hi @beracha It's very nice to meet you. I am hopeful that a liver transplant patient..." + (show)
@hello1234

Hi @beracha
It's very nice to meet you. I am hopeful that a liver transplant patient will respond to your question about ductopenia shortly.
In the meantime, I have a question regarding your acute rejection after 25 years. Was there a change in your immune suppression meds or dosage that brought this on after 25 years? Are you currently taking Tacrolimis and Mycophenolate to treat the chronic rejection or what is the treatment plan?
Thank you so much for sharing your story.

Jump to this post

Hi. I take tacrolimus and have since 1990. I was in clinical trial for fk 506, now tacrolimus. Prednisone for first 3 months. All was great until 2015 when I experienced major stress, husband diagnosed with cancer and 3 weeks later my mother passed. My numbers were in normal range but for 25 yrs my numbers were same. They rose despite being in normal range. Ggt is. Got biopsy and diagnosed with rejection, ductopenia, and pancreatic cyst impinging on bile duct. Dr increased tacrolimus to high level for 3 years. I also tested positive for donor antigen which can cause issues. Because my transplant was 33 years ago I did not have the testing that current patients go through. Thank you for caring .

REPLY
1 reply
hello1234 | @hello1234 | Jan 14 9:03am
In reply to @beracha "Hi. I take tacrolimus and have since 1990. I was in clinical trial for fk 506,..." + (show)
@beracha

Hi. I take tacrolimus and have since 1990. I was in clinical trial for fk 506, now tacrolimus. Prednisone for first 3 months. All was great until 2015 when I experienced major stress, husband diagnosed with cancer and 3 weeks later my mother passed. My numbers were in normal range but for 25 yrs my numbers were same. They rose despite being in normal range. Ggt is. Got biopsy and diagnosed with rejection, ductopenia, and pancreatic cyst impinging on bile duct. Dr increased tacrolimus to high level for 3 years. I also tested positive for donor antigen which can cause issues. Because my transplant was 33 years ago I did not have the testing that current patients go through. Thank you for caring .

Jump to this post

Hi @beracha
I am so sorry to hear about your husband's cancer diagnosis and your mother's passing. Either event by itself would cause major stress, but the both together is unbelievable. How is your husband doing with his treatment?
It sounds like the liver transplant team was able to get your rejection episode under control and your liver enzymes are slightly elevated, is that right?
What is the treatment that is recommended for ductopenia and the pancreatic cyst?
Thank you for sharing your experiences. It's wonderful to hear from an experienced transplant patient!

REPLY
1 reply
beracha | @beracha | Jan 19 4:04pm
In reply to @hello1234 "Hi @beracha I am so sorry to hear about your husband's cancer diagnosis and your mother's..." + (show)
@hello1234

Hi @beracha
I am so sorry to hear about your husband's cancer diagnosis and your mother's passing. Either event by itself would cause major stress, but the both together is unbelievable. How is your husband doing with his treatment?
It sounds like the liver transplant team was able to get your rejection episode under control and your liver enzymes are slightly elevated, is that right?
What is the treatment that is recommended for ductopenia and the pancreatic cyst?
Thank you for sharing your experiences. It's wonderful to hear from an experienced transplant patient!

Jump to this post

Thank you for kind thoughts. My husband is in remission 5 yrs so it's wonderful! My ductopenia and impingement on bile ducts from pancreatic cyst diagnosis is a progression of scarring. I do CT, Mri,liver duplex, measuring flow volume, annually with ultrasounds and monthly blood work. I am happy to share. Sorry for the delay in responding.

REPLY
beracha | @beracha | Jan 27 5:28am
In reply to @hello1234 "Hi @beracha It's very nice to meet you. I am hopeful that a liver transplant patient..." + (show)
@hello1234

Hi @beracha
It's very nice to meet you. I am hopeful that a liver transplant patient will respond to your question about ductopenia shortly.
In the meantime, I have a question regarding your acute rejection after 25 years. Was there a change in your immune suppression meds or dosage that brought this on after 25 years? Are you currently taking Tacrolimis and Mycophenolate to treat the chronic rejection or what is the treatment plan?
Thank you so much for sharing your story.

Jump to this post

Maybe ductopenia is better known as Vanishing Bile Duct syndrome. Ty for ur kind thoughts

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 28 6:59pm

@beracha, I am not familiar with ductopenia, bit it sounds like your medical team is keeping a close check on you. And from what I read in your previous post, you have a busy schedule of tests. I have not seen where you transplanted, but are they the ones who are monitoring you and running the tests? Do you live nearby so that you can drive back and forth?

REPLY
1 reply
beracha | @beracha | Feb 1 5:42am
In reply to @rosemarya "@beracha, I am not familiar with ductopenia, bit it sounds like your medical team is keeping..." + (show)
@rosemarya

@beracha, I am not familiar with ductopenia, bit it sounds like your medical team is keeping a close check on you. And from what I read in your previous post, you have a busy schedule of tests. I have not seen where you transplanted, but are they the ones who are monitoring you and running the tests? Do you live nearby so that you can drive back and forth?

Jump to this post

I am followed by Pittsburgh transplant team since 1990. I used to go out there for all imaging. Now I live near Harrisburg and insurance makes me use Penn State health. I am trying new UPMC imaging center so my transplant team can use their own radiologist. Thank u for replying.

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