Par for the course – it’s been a while since I’ve provided an update. 😊
On the PSC front for me, things have been pretty stable since I last posted. Every once in a while, I’ll have a night of itching or nausea but overall not too bad and I’ve been able to live a normal life.
I did have my annual check-up with my Hepatologist down at Mayo in Rochester, MN in July. My MRI and bloodwork looked pretty good so we’ll continue to monitor symptoms as they come and check back in a year if nothing changes.
For anyone curious, my bloodwork (Liver Function Tests (LFTs)) are generally always elevated above the normal range even when I’m feeling well. When I’m experiencing narrowing in my bile ducts they shoot up even higher and my bilirubin level is typically outside the normal range as well. If blockages occur, our plan of action will likely be to have an ERCP (surgery) to go in and balloon dilate the bile ducts open to provide relief. The doctors are encouraged that it’s been 18 months since I’ve had to have an ERCP so hopefully it’ll be a while before I need another.
As I mentioned in my last post, I attended the annual PSC Conference in June and it was a great experience! If you’re a PSCer reading my story, I highly recommend trying to attend a future conference. It was really encouraging to hear from other patients and doctors who understand what we go through with this disease and even getting a little knowledge about what the transplant process is like was helpful. My favorite part of the conference was breaking out into peer groups and spending time talking with other women about our questions or experiences with where we’re at in the journey.
I was also very encouraged by the research that’s being done and doctors are hopeful they’ll figure this disease out. It’s just a matter of when.
Unfortunately, my brother was also diagnosed with PSC this spring when he experienced an itching episode that wouldn’t go away. It’s been a lot for our family to process both of us in this fight, but our parents want to do what they can to help so they have graciously put together a campaign to help raise awareness for PSC and funds for research. If you want to learn more or donate, you can check out their page.
As always, thanks for joining me on this journey.
~ Liver Life to the Fullest