Re-occurance of PCS post transplant

All,

8 weeks or so ago, my wife, attended the liver transplant clinic for her 3 monthly checkup. We were told that her LFTs were off, and to re-test in the next few weeks. Before re-testing she was taken ill and was admitted to hospital for a week - an MRICP was carried out onthe liver during her stay.

Following the release follow-up, we have been told that there is some evidence of the PSC returning, although things are at a very early stage.

My wife, recevied her transplant Christmas day 2009.

Has anyone been through this situation, that can offer any insight. All, and any information, would be great.

Thanks to all, hope all are well.

Antony

Hi Antony and wife. I have had the PSC return in my transplant.

Brief history. First PSC dx in 1993. 24 ERCP's and cholangiocarcinoma tumorectomy later a transplant in May 2006. Did well for almost 2 years. Then started rejections - 8 in one year, knocked out immune system and by that fall rediagnosed w/ PSC. To date 39 ERCP's and well on the way to another transplant.

Info received from Dr. Trotter then at Univ of Colo transplant unit. According to their records about 25% of their PSC transplanted have PSC return. The disease progression the first time may not equal the progression the second - could be more or less aggressive. Of that 25% 1/4 had already had other transplants.

And one person was on his 3rd transplant - very rapid disease progression.

Your wife will be eligible for another transplant but you do have to get in line and go through the whole thing again. I have not returned to work since summer of 2009 when they knocked out my immune system. My adrenals crashed from a prednisone withdrawal and now I take adrenal supplements and am on permanent disability. Low energy, low blood pressure and no adrenaline response to stress are chief characteristics of this.

Thus I have ERCP's every 3 months. Personally I had a Power Port put into my chest wall so I didn't have to have venipuncture anymore. Prednisone destroys your veins and mine are so painful, small and blow easily. This has made going through this again a huge difference. With a port you do have to have a nurse trained in that do the access. I go to an outpatient infusion center once a month for blood draws. When I have PET scans - 2x a year I let them know on preadmit I will need port access.

And ER visits I make them use the port. I have had my port since April 2009. If you take good care of it, it can last a long time. It needs to be accessed ever 30 days or less.

Please contact me anytime if you have questions - ■■■■■■■■■■■■■■■■.

Deb

Thanks so much for sharing!

Deb,

As Scott says, thank you so much for sharing - it sounds like you've had it unbelievely tough. Our heart and thoughts goes out to you, and your family. You strength must be an inspiration to all. Certainly to me.

My apologies for not replying sooner - has been extremely hectic recent, on a number of levels, but I needed to respond to you.

My wife is doing ok - it turns out that she has not been re-diagnosed with PSC but her doctors, believe there is evidence of its return. As you can expect this has hit her pretty hard, and psychologically she has some pretty bad days. Lindsay has struggled all her life with health issues, and post-transplant continues to have ups and downs. Most recently she continues to suffer from diarrhoea, which the doctors beleive is due to pouchitis. As a 30 year old, things causes her more psychological issues, as well as the additonal associated health issues.

It is a struggle but knowing there are others out there with your strength, certainly helps.

I have your email address, and if need be I'll be in touch. Mine for the record is ■■■■■■■■■■■■■■■■■■■■

Antony and Lindsay

Brisbane, Australia

PS Scott - I guess just thank you ...

Hey Antony & Lindsay,

I have to say getting rediagnosed was one of the hardest and most bitter moments in life. I felt betrayed, let down, a failure but most importantly I felt that weight that had lifted off my shoulders being disease free creep back in. And btw it took 9 mos to rediagnose for sure.

Just last night at dinner I was telling a good friend that I really don't know if I can go through this whole process yet again. Knowing you are going to get more sick and gradually losing more control and certainty. So I don't think about it but focus on living life large right now.

Working on the bucket list. And really feel more alive than ever which is the positive side of this. I'm no longer afraid to be and do and go after what I want and who I want to be.

If it helps any I've written my autobiography. It is at www.debpetersen.com. There is my life story and there is an essay on my thoughts about how I handle the psychological issues.

All the best. Thanks for the email.

Greatdane61,

I posted comments along with you about a year ago and then lost contact with your story. Since then, I had a live donor transplant on February 2, 2012 and am in very good health, today. You are living proof that PSCer's are survivalists. Survivalists never give up. Never. That's how I am. I got very sick before the transplant. My MELD was just 12. The surgeon told me that I would not live long enough to get a cadaver liver. That was March 2011 after I had been on the transplant list for 2.5 years. By God's good grace, we had a high school friend of my daughter become my donor. They had not seen each other for 15+ years. She saw my need on my daughter's Facebook page. God works in wonderful, mysterious ways. He gives us strength and courage to resist this awful disease. We, who fight PSC are pioneers that will one day lead to finding a cure. I actually think they will find a way to re-grow livers in our bodies using stem cells in a much less invasive surgical procedure. They are actually studying that process. It's not science fiction. I am uploading a picture taken for me by an operating room nurse that shows my donor's healthy liver graft that was moments away from being transplanted into me and the second picture shows my liver after removal and how PSC had ravaged it. My doctor said he did not know how I was functioning with this.

Take care of yourself,

Paul



greatdane61 said:

Hi Antony and wife. I have had the PSC return in my transplant.

Brief history. First PSC dx in 1993. 24 ERCP's and cholangiocarcinoma tumorectomy later a transplant in May 2006. Did well for almost 2 years. Then started rejections - 8 in one year, knocked out immune system and by that fall rediagnosed w/ PSC. To date 39 ERCP's and well on the way to another transplant.

Info received from Dr. Trotter then at Univ of Colo transplant unit. According to their records about 25% of their PSC transplanted have PSC return. The disease progression the first time may not equal the progression the second - could be more or less aggressive. Of that 25% 1/4 had already had other transplants.

And one person was on his 3rd transplant - very rapid disease progression.

Your wife will be eligible for another transplant but you do have to get in line and go through the whole thing again. I have not returned to work since summer of 2009 when they knocked out my immune system. My adrenals crashed from a prednisone withdrawal and now I take adrenal supplements and am on permanent disability. Low energy, low blood pressure and no adrenaline response to stress are chief characteristics of this.

Thus I have ERCP's every 3 months. Personally I had a Power Port put into my chest wall so I didn't have to have venipuncture anymore. Prednisone destroys your veins and mine are so painful, small and blow easily. This has made going through this again a huge difference. With a port you do have to have a nurse trained in that do the access. I go to an outpatient infusion center once a month for blood draws. When I have PET scans - 2x a year I let them know on preadmit I will need port access.

And ER visits I make them use the port. I have had my port since April 2009. If you take good care of it, it can last a long time. It needs to be accessed ever 30 days or less.

Please contact me anytime if you have questions - ■■■■.

Deb

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