Primary Sclerosing Cholangitis (PSC)

Posted by jacinta @jacinta, Aug 21, 2017

I’m told I need to have a partial liver transplant. I do have a Donor. My question is: should I get a second opinion ? I have an appointment with Mayo Clinic. I heard that they are the best.

I’d love to hear from people that had the partial liver transplant. Are you glad that you had it done? And are you getting a better quality of life.

Jacinta

@sandyjr

Hi Colleen. My daughter has started taking infusions of entyvio. She has been having stomach aches which are especially noticeable in the night. She stopped taking the ursodiol and has had some relief. She had her first infusion this past Wednesday. She sees her Dr on Monday, so hopefully they can get to the issue of the constant stomach ache. On your sight, I think I saw something about communicating with Mayo doctors. We live in NJ, so being that her PSC diagnosis is relatively new and in it's early stages, I do not think the doctors out there would consider her sick enough to see in person. Her doctor is not a specialist in the illness, but is far better than the specialist she was seeing who could not seem to get approval from her insurance company for the tests needed for diagnosis and the new doctor has been able to with no problem…what the heck? He wants to continue as her doctor and is very willing to communicate with the doctors at Mayo about her. Is this possible and if so, how is it done?

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Hi @sandyjr,

I came across this post about your daughter and thought you might be interested in viewing this video where Mayo Clinic gastroenterologist, Dr. Mark Topazian talks about IgG4-related sclerosing cholangitis or IgG4-associated cholangitis – especially since they mimic primary sclerosing cholangitis.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/

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@rodney9999

I was just curious if anybody out there experienced bad lower leg pain and swelling prior to transplant? Personally I experienced calf swelling and lower leg pain and then post transplant it disappeared.

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@rodney9999 I had a lot of swelling in my feet and lower legs but my liver problem was cirrhosis. Before I knew I had cirrhosis we were traveling and my feet got so swollen that I had to buy a cheap pair of beach shoes to wear, nothing else would go on my feet. Until shortly before my transplant I had some minor swelling and had to really watch my sodium. About six weeks before my transplant my feet swelled again as they had when we were traveling, I could only wear slip-on slippers. I also developed ascites then and felt like I had a barrel around my body. I had lost weight (intentionally) and saved some of larger clothes. If I hadn’t I wouldn’t have had anything to wear.
My transplant came through two months sooner than we expected, what a blessing that was.
JK

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@rodney9999

I was just curious if anybody out there experienced bad lower leg pain and swelling prior to transplant? Personally I experienced calf swelling and lower leg pain and then post transplant it disappeared.

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@rodney9999, I received my simultaneous liver and kidney transplant for PSC in 2009. I don't remember having a specific lower leg pain with swelling . However I did experience swelling in my legs, feet and ankles (edema) along with fluid accumulation in my abdomen (ascites). I went from being a daily walker to being barely able to walk across the room. I was hospitilized for acute kidney failure, and placed on dialysis. I remember that my nurses had to lift my legs for me because they were so swollen and I was so weak. Physical therapy, dialysis, and my desire to recover, helped me to regain my movement, along with reduced edema. I also had many paracentesis procedures to drain the ascites. Like you, the swelling went down after my transplant.

Rodney9999, Did you have any mobility issues prior to your transplant? I'm curious, Are you a PSCer?

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@jacinta

I had an ERCP on 15th May and unfortunately it didn’t get rid of the scratching. I contacted my Nurse and Specialist. I begged them not to let me slip through the cracks. Both ignored me.
However, The Doctor that performed the ERCP had his Nurse contact me. An appointment was set up for 5/28. When the Nurse saw me, I could see her reaction to my body that was full of scabs and blood from scratching. She wanted to have blood work done immediately, but that Department was closed. She begged me not to fly home to Ireland, but I had my flight paid. I had only 90 minutes to get to my flight to check in etc. I told that Nurse that my own Nurse and Doctor ignored my begging plea to see me before I flew home and ignored me.

Anyway, I returned from Ireland, had blood drawn. I’m now waiting for an MRI on 24th June. Until then, I continue to destroy my body by scratching

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@jacinta, I send you my thoughts and hopes that your June 24th MRI provides enough information for a treatment and relief for your itching.

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@rosemarya

@rodney9999, I received my simultaneous liver and kidney transplant for PSC in 2009. I don't remember having a specific lower leg pain with swelling . However I did experience swelling in my legs, feet and ankles (edema) along with fluid accumulation in my abdomen (ascites). I went from being a daily walker to being barely able to walk across the room. I was hospitilized for acute kidney failure, and placed on dialysis. I remember that my nurses had to lift my legs for me because they were so swollen and I was so weak. Physical therapy, dialysis, and my desire to recover, helped me to regain my movement, along with reduced edema. I also had many paracentesis procedures to drain the ascites. Like you, the swelling went down after my transplant.

Rodney9999, Did you have any mobility issues prior to your transplant? I'm curious, Are you a PSCer?

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@rosemarya Your post actually brought tears to my eyes, it made me remember just how miserable I was. About a month or so before my transplant I had an appointment with my hepatologist. I was so miserable when we got in the door of the hospital my husband asked me if I wanted a wheelchair. I said no, and regretted it. My feet were very swollen but I was still able to get some sandals on, with my feet bulging out of them.
The hepatologist looked at my feet and told me that things would get better. I was on two diuretics but they really did not help a lot, or maybe they did and I would have been much worse without them. I cannot imagine being any worse than it eventually got though. That last month or so before transplant really was miserable.
The swelling went down gradually after transplant. I am so grateful to be here today and to be well and feeling strong.
JK

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@contentandwell Your post is bringing back memories I had put out of my mind. During the last few of months of chemo I put on 50 pounds due to water retention. It got so bad I was diagnosed with congestive heart failure. I spent a week in the local hospital. I went home for a week and then was admitted again. This time my PCP sent me to Mayo where I was diagnosed with aHUS a disease that was slowly damaging my kidneys. It took several months of treatments and adjusting my meds before I got rid of all that fluid.

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@rosemarya

@rodney9999, I received my simultaneous liver and kidney transplant for PSC in 2009. I don't remember having a specific lower leg pain with swelling . However I did experience swelling in my legs, feet and ankles (edema) along with fluid accumulation in my abdomen (ascites). I went from being a daily walker to being barely able to walk across the room. I was hospitilized for acute kidney failure, and placed on dialysis. I remember that my nurses had to lift my legs for me because they were so swollen and I was so weak. Physical therapy, dialysis, and my desire to recover, helped me to regain my movement, along with reduced edema. I also had many paracentesis procedures to drain the ascites. Like you, the swelling went down after my transplant.

Rodney9999, Did you have any mobility issues prior to your transplant? I'm curious, Are you a PSCer?

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I did have mobility issues big time. I showed no symptoms until my early 40s when during a routine lab draw my labs were all over the place. My diagnosis was attributed to 100% alcohol. I did drink in my 20s and 30s however it seems real fishy to me this was the only reason given what I consumed. I did have an MRI that recommended Ercp however it was never conducted due to risk factors given my higher INR. I also never had a liver biopsy done.

Also I was tested for celiacs and was positive for both gene pairs however I have not had a small intestine biopsy yet due to my recent transplant.

I’m just very fortunate to have been transplanted and have been doing well 2 months post op.

So to answer your question, I’m not sure I guess 🙂

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@rodney9999

I did have mobility issues big time. I showed no symptoms until my early 40s when during a routine lab draw my labs were all over the place. My diagnosis was attributed to 100% alcohol. I did drink in my 20s and 30s however it seems real fishy to me this was the only reason given what I consumed. I did have an MRI that recommended Ercp however it was never conducted due to risk factors given my higher INR. I also never had a liver biopsy done.

Also I was tested for celiacs and was positive for both gene pairs however I have not had a small intestine biopsy yet due to my recent transplant.

I’m just very fortunate to have been transplanted and have been doing well 2 months post op.

So to answer your question, I’m not sure I guess 🙂

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@rodney9999, @marvinjsturing, @contentandwell
Wow! Just look at us. Different medical issues, and the same bothersome swelling. I think it really illustrates what my doctors have always said about us each being different. I marvel at the skill and knowledge that my doctors used to discover my disease and necessary care that led to my transplant. It was a miserable and frightening journey. There were times when I didn't know whether I would live long enough for transplant. I celebrate that I am beyond that, and as a result I take good care of these precious life saving organs. However, my heart is heavy with concern and caring for those who are currently experiencing their own complex issues while waiting and hoping for a transplant.
@contentandwell, I still shed tears,and so does my family when we remember those times.
@marvinjsturing, I commend you for the strength and determination that you have demonstrated to bring you where you are today.
@rodney9999, I am happy that you are doing well with your new liver. Thank you for posting this question about swelling. Regardless of the underlying cause for transplant we are here for each other. I welcome you to continue to ask questions and to read (and participate) in any of the discussions on Connect. You are among friends here and we would be happy to help you adjust to your new way of living with a transplanted organ.
Rodney, I only asked you about the PSC because there is a PSC Page that contains up-to-date research information about PSC as the search is ongoing for a cure. https://connect.mayoclinic.org/page/psc/

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