Howdy, This will be a bit of a story…But I need to get it out…
I (37M) was diagnosed with PSC back in 2010 after routine bloodwork found elevated LFTs, no other symptoms. It all remained very quiet and well behaved until a series of flares in 2018 had me on the transplant list and waiting for the call within a matter of weeks. After a couple of months on the list, and 2 dry runs into the the hospital, my LFTs dropped dramatically, my bilirubin returned to normal and I was suspended then removed from the list. Things went back to “normal” and I continued on with my life.
Up until November last year things had been mostly OK, no major PSC problems to speak of, and I was just getting on with everything, but I felt as if my anti-anxiety medication (celexa/citalopram) was no longer working as well as it used to, so I discussed with my GP about changing it to something else.
This turned out to be a huge mistake, the new meds did not agree with me at all, and I had to stop taking them, which caused what what was my normal level of anxiety to explode into severe territory I’ve never been into. This was over the Xmas break as well and somehow I’d lost the prescription for my old meds, and no GP was available to re-prescribe. I attempted a visit to a local emergency room, presenting with severe anxiety, needing an emergency prescription, but had to leave after not being seen for over 7 hours.
Eventually I got back on my old meds again, at an increased dose, but somehow along the way I have lost my ability to be “okay” with my PSC. It used to live in a quiet place in the back of my brain, I’d go to my appointments and never really think about it. Now it’s ALL I can think about.
Every random pain, or odd feeling is "oh god its PSC, or the cancer, or my doctors have missed something, or reading and rereading the same medical information from the frankly terrible Dr. Google.
In the overall scheme I think I’m doing OK. There’s no other health issues (mental health aside), I’m seeing a therapist, I don’t have any IBD, I see my liver specialist every 6 months like clockwork, with 6 monthly blood tests including CA19-9 and some form of yearly imaging (US, CT, MRI), and I am in Australia, so there’s no insurance worries. Despite all that, I just can’t be…okay.
How do you all cope with your diagnosis? Is there some secret strategy I’ve forgotten along the way that will allow me to put this awful gremlin back in its little box in the back of my brain cupboard? How I can not stress and dwell on the cancer risk? How can I just trust my hepatologist and go with what she says, because it’s her job. How can I get my life back?