Primary Sclerosing Cholangitis (PSC)

Hi, Sandy!
I was diagnosed with PBC (primary biliary cirrhosis) in 1992 at the age of 48, solely on the basis of elevated liver enzymes. A liver biopsy was done to confirm the diagnosis and stage the disease and returned positive for cirrhosis. At the time I lived near Chicago, so had good medical care available and the GI guy started me on methotrexate which had been one of the Mayo protocols for treatment and I understand has since been discredited as a treatment for PBC. Nonetheless, due to the drug or by coincidence, the enzymes began to fall and slowly, very slowly, returned toward normal. It turned out I had a heavy autoimmune component to my disease and it progressed very slowly, allowing my liver to accommodate and I had 25 years of extraordinarily good health while being followed for PBC. Eventually in 2017, a couple lesions showed up on a routine MRI which turned out to be hepatocellular carcinoma. That's when I first reached out to Mayo and it was the best decision of my life. First they took care of the cancer and then did a liver transplant in November of 2018. I could not have wished for better or more compassionate care.

I am doing well and hoping for many more good years. I hope this offers you some hope for your daughter. I'm now 74 years old and have led an active and full life; thanks to the Miracle of Mayo it has been extended. My best wishes for you and your daughter.
Sharon

@sandyjr well i would say try to apply for SSi disability. And if she is thinking about Divorce then usually a lawyer can get her Medical coverage thru her husband exspecially if she can't work.

@silverwoman, Welcome to Mayo Connect. Congratulations on your perseverance and your commitment to take care of yourself. You have been on quite an amazing journey. I am happy to hear that you are doing well. I will be celebrating 10 years in April, so I invite you to come along and enjoy the post transplant life for many years! I was once told by 3 gentlemen, all transplant recipients who called themselves the Three Amigos, that the 'secret' to long survival is to take your meds and take care of yourself. I think that is good advice for us, don't you? Together these guys had 50+ post transplant years.

Here is something that I always enjoy sharing with new transplantees: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
If you have not yet discovered the Transplant Pages - https://connect.mayoclinic.org/pages/
I suggest that you check out the regularly updates Newsfeed posts presented by the transplant staff members. You might even recognize some of them!

How has the adjustment to post transplant life gone for you?
What is the best part of being post transplant for you?

@sandyjr, Has she considered talking to a lawyer? I saw where another member has suggested this.
I hate to hear that on top of her health problem she is living in a threatening environment. She is going to need support both emotionally and physically if her health begin to fail.
Is her medical team aware of her home and financial situation? Has she spoken to a social worker?

Thanks for your welcome and the shares, Rosemary. I'd love to join you for many years of post transplant life; it's such an inspiration to know that you and many like you have enjoyed so many, many years. Thank you for the shares; I will check them out. As for adjustment to PT life, not being 100% my old self yet is a bit frustrating.....not quite ready for my old pace yet. I'm trying to avoid crowds in this first six months PT, and being, by nature, very gregarious, this is a challenge. The best part is having the anticipation and concerns about the operation behind me and knowing that my family and friends have been so supportive and caring, a solid foundation of love and prayer. Life is good.

This is fairly new, so she has not had time to do much but go for tests and Dr’s appointments. She has an attorney, but has not been able to get in touch with him. He can guide her about who to see for disability and maybe give her some additional advice. She has no health team yet. She just has her GP who noticed the stuff with the liver enzymes and the gastroenterologist that she ended up with in the ER. She had seen her former gastroenterologist who was taking his time getting tests for her. The new Dr has gotten her a number of tests to diagnose the PSC and he is also treating her for her Crohn’s. I am liking how well he treats her and is working for/with her. We are new to this, so just finding our way. Getting away from the husband is a problem as he carries the health insurance and has told her if she leaves he will just quit his job....he really loves her, right? She does pretty well standing up for herself, but she sure does not need the stress and confusion. I have been single for 27 years and truly like my life and I think she would too, if she ever gets the opportunity.

Hi @sandyjr and @silverwoman, it's been a while so I wanted to check in. Would love to get an update. How are you?

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?

@sandyjr, I am a PSCer who has had a transplant. I do not know the answer to your question to Colleen about communication with doctors at Mayo for PSC, but I will share my own experience with you.
I live in central Kentucky. My PCP first noted that I had elevated liver function in my routne labs. He sent me to our local gastroenterologist (GI who had some experience and knowledge of liver disease, and who also had professional relationship and connections with the liver specialists at both of the regional Liver transplant centers (Univ of Kentucky and Univ of Louisville). In collaboration with one of his hepatologist buddies he was able to diagnose and monitor my PSC. I credit him with being a major influence in me being alive today. He referred me to the liver transplant department at the Univ of KY (most convenient location - 45 minute drive) when I was ready for that step. I received excellent care there. And I would have transplanted there except that situation got suddenly complicated. It was my UK team who referred me to Mayo for treatment and eventual transplant.
I want to add that I did not have Crohns. I took URSO and it didnt cause me any issues.

Strength to your daughter. I think she has found a good proactive doctor!

To my fellow PSCers.
@jacinta, @sandyblair, @monty49, @jenchavez, @sandyjr, @silverwoman,

Today I am thinking about all of you and since I have not heard from you for a while, I want to check on you. From my experience, I know that PSC can be a long and miserable journey.
How are you doing?