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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Old diagnosis, new member

Hi everyone,

I was diagnosed with PSC when I was eleven. However, since being diagnosed I have, thankfully, yet to experience any symptoms that are associated with the disease. My parents never talked with me about my PSC, so I just kind of ignored it for the past ten years. I get yearly colonoscopies, periodic bloodwork, and visit my gastroenterologist for my Crohn’s, but that is the extent of my care.

Now that I am out of college, I have started spending a lot of time thinking about the potential impact of this disease on my life. Any time I think deeply about my future with PSC, I tend to feel overwhelmed and upset. I thought that perhaps this joining this forum could give me a better handle on managing my PSC in the future. Given this information, I have come up with two questions.

  1. I want to take a more active role in managing my PSC. I think the first step is to find a hepatologist. What should I look for in a good hepatologist? I live in the San Francisco bay area if anyone has any recommendations.

  2. The second question (or group of questions) is broader and more difficult to answer. Essentially, I’m not sure how PSC should or should not alter my life plans. There are a lot of questions in this vein. For instance, should I plan to stay in one place rather than more to different cities during my twenties? Should I plan to have children? How should PSC affect how I plan for retirement? Obviously, these questions are very personal so they may not be easily answerable, but I appreciate any opinions from others with PSC.

I realize this a lot of questions and thanks in advance for any advice!
dgs

Hi dgs,

I am happy to hear that you don’t have any symptoms of PSC. It shows everyone’s PSC moves at a different pace. well, good that you have questions and glad you reached out to the community.

We live around the same area and visit Dr.Yinka Davies in Sacramento for our son. She has a lot of experience with PSC and her interest is Vancomycin only. Earlier we were at UCSF but they won’t prescribe vancomycin to treat PSC. May be you can visit/talk to her and see what she recommends to hear one side of the story. And get a second opinion as well from a different hepatologist.

Regarding the other question, everyone responds differently to PSC and you should live your life to the fullest as if PSC won’t hold your life back even a tiny bit. One piece of unsolicited financial advice is to max out your HSA if you aren’t already.

DGS,
Thanks for your post and for your increased desire to watch your PSC a little more closely. I would strongly encourage you to transfer your care to a hepatologist associated with a transplant hospital. This will be most important if and when you ever need a transplant. I’m glad you are thinking of contacting one.
I am happy to address your second question as well. All of us who have/had this disease have faced very similar decisions. We all will approach these a little differently but here’s my thoughts. As far as altering your life plans. I would encourage you to press on with each and every plan you have for your life. If you fall in love with a young lady and you decide you want to spend the rest of your lives together, by all means get married, start a family, do everything your hearts would desire. Do NOT let this diagnosis lead your destiny. One thing about PSC, when it rears its ugly head up, it’ll get your attention. And when it does you deal with it. There will be days down the road that you don’t always have the energy to do every single thing you’d like, but do what you can. Pace yourself. Don’t ignore pain or signs that you are getting a bile duct blockage. Know those signs and what to do if you sense a blockage or infection setting in. If your temperature gets much over 101.5 and you are having symptoms, by all means get to the ER. They will want to put you on IV antibiotics. I’d encourage you to ask your hepatologist about giving you a prescription of Cipro that you can fill and keep on hand so if you get a cholongitis attack you can start the medicine right away, even while still maybe needing to go to the ER. Make sure you have your hepatologists emergency night/weekend contact numbers. Know who to call and what to say to get help and answers when those are needed urgently.
Plan on your retirement, plan on a long and fulfilling life. If you find yourself needing to go on the transplant list and you live in a transplant region that it’s more difficult to get a transplant in your blood type, look into dual-listing with another transplant center in a different region that more suits your blood type. I have a contact of someone who specializes in helping patients find the best center for them in situations like this should that occur.
These are just some thoughts off the top of my head. We are here for you and will help in any way we can. Live life to its fullest, aim high for your dreams and not let this disease control your thinking. Good luck my friend.

PS - I guess I shouldn’t assume that you are male vs. female so if I got that wrong sorry! :slight_smile:

Mark
PSC 2011 / Liver Transplant 2015

DGS,

Many will answer your second question in their own way…

For me I have made a very conscious decision to never make a single decision based on what ifs or what could be or what about PSC this or that. I’ve done this when I was first diagnosed with no symptoms in my teens, through my schooling, getting married, kids, demanding career. Even today when symptoms certainly have an impact on my life and as I sit here today listed for transplant, I make every decision based on circumstances of that day, the present, never the future.

I almost take a strange satisfaction in making my decisions based on my own criteria, while giving PSC figurative middle finger in my mind as I make a decision that laughs in it’s face.

Just my way, that works for me.

Pls use this group for any questions, so many great resources here.

E

Thank you for your kind responses. They really brightened my weekend! These questions have been weighing heavily on my mind for a while now, so I’m glad that I finally decided to sign up for an account here. This forum seems like a great way to learn more about PSC as well as become better informed. I’ll be sure to post here if I have any more questions.

Thanks,
DGS

DGS,
This forum can be helpful with the first questions by asking questions. On the second one, as Eric said, we will all answer it in our own way. Both when I was asymptomatic, and when the symptoms arose, I accepted the knowledge I had a liver disease, but I tried my best to control my life as much as I could instead of it controlling me. In time, it began to be a balancing act.

So, the best answer will be determined by you. Keep in mind that one of your best defenses will be a good, positive and strong mental outlook and preparation.
Jeff

If you live in Bay Area, then Stanford University liver clinic (offices in Palo Alto, Menlo Park etc) is probably the most convenient choice. They are all familiar with Vancomycin and they should be top quality in general.

Stay positive and go on with your life. Besides, new treatment options are under development (two official phase3 level trials plus Vancomycin already available).

(and I would skip Yinka since she is far away and pediatric gi - Stanford docs are fully aware of vancomycin)