I realized I had not updated the site on my progress in some time, so here we go!
I was diagnosed with PSC in 2012. Though a bit shocking at first, I accepted the diagnosis and continued living a normal life until 2019. I had even worked as an Expat in South Korea four years.
March of 2019 I returned to the US and moved to St. Louis to take a position with a Biotech Company.
I had held my disease in check until around November or so of 2019, when my Bilirubin and Alkaline Phosphate started to jump. 2020 was a blur between my worsening disease and the COVID pandemic. I continued getting sicker as 2020 progressed, making it onto the transplant list in November of that year.
As 2020 turned to 2021, I have to admit I was not thinking I’d be around much longer with how fast I was declining in health. I was hospitalized January 26, 2021 with a MELD score of 42 (did not know they went that high), with my Bilirubin at 14.7 (ALK near 1000), bright orange eyes and skin, and down to about 125 pounds (back to 180 now).
I was lucky, my 3rd day in the hospital I was told they had a liver being flown in for me, and that I’d undergo surgery the next morning as they started prepping me. Without the liver becoming available, I likely would have never made it out of the St. Louis hospital.
I will not go into all the transplant experience entails, nor the recovery process (covered in another post), but one year later I will discuss what being a “survivor” of PSC is like.
I’ve not felt better in years! I think even before my liver failed, I was feeling the effects of the disease. What I used to call the PSC sickness (in bed for days with a swollen liver, shivers, no appetite, feeling like my liver was going to explode), to the nonstop itching and jaundice, are in the past. My blood work is amazing, with my bilirubin at 0.3 (though my ALK is still a little high at 212). I was warned that my cholesterol would likely jump after the transplant, as I had been in the mid 200s prior, but testing in November showed me at 170, well within normal range.
I even went back to work in May (less than 4 months after) to prove to myself I could be a fully functioning member of my team once again. But life is not a fairy tale Despite being more productive than I’d been in years, i was fired three days before Thanksgiving over a Microsoft Teams meeting. Reasoning? My past performance between March 2020 and November 2020. My former boss stated “I had not handled my illness to their satisfaction” and did not complete my goals prior to going on STD. If it’s not one thing it’s another Craziest thing is I worked for a Biotech CDMO and now I’m on Biologics for life!
Other notes: People close to you will look at you differently, especially if you are open about what you went through. Some will embrace your success, others will be one more distant to you as they doubt your long term survival. You will have to embrace the new you as far as appearance (I still had my shirt off during the summer and you can see people staring at the scarring). On the bright side I do not feel limited in any way. I’m still going to work in biotechnology like I have for close to 30 years (just for a new company), I’m still going to perform my hobbies (golf, paleontology, weights, hiking), and I’m still going to live my life as if I’m not a liver transplant survivor. I’m not going to take life for granted, nor put my career over my health as i did in the past. I feel in a way I’m “playing with house money”, as was not supposed to still be here in 2022. I want you to know there is hope for those of you in earlier stages of this nasty disease, but it will not come easy