In 2023, I started feeling super weak. I couldn’t walk up the stairs or even stand at the sink to do dishes without feeling like I was going to pass out. I finally went to my primary care doctor for a general checkup (hadn’t gone in a few years 🙃). They ran bloodwork and found out my hemoglobin was at 4 (aka organ-failure level — not enough red blood cells to carry oxygen, so your organs start shutting down… wild, right?).
I was immediately admitted to the ER where I got three blood transfusions. The second I got more blood, I felt instantly better. Like, the turnaround was unreal.
Next, the doctors had to figure out why I was losing so much blood. They did a colonoscopy and endoscopy and discovered I had ulcerative colitis (an inflammatory bowel disease). The shocker? I never had any UC symptoms! Because of that, they were also able to diagnose me with Primary Sclerosing Cholangitis (PSC), a rare liver disease that only a small percentage of people with UC get.
And here’s the even crazier part — I have never had symptoms of PSC either. To this day, I am not in pain and I’ve never experienced any discomfort from it. That’s what makes this whole situation so hard to wrap my head around!
After those diagnoses, I was put on steroids to manage the UC and now get yearly colonoscopies (since I’m at higher risk for colon cancer). For the PSC, there’s no cure — just close monitoring. I see a hepatologist who does yearly MRIs, bloodwork, and liver ultrasounds to keep tabs on things.
Fast forward to now: at my most recent MRI in August, they found two masses on my liver and ordered a biopsy. On Friday, September 12th, the biopsy results came back and I was officially diagnosed with cholangiocarcinoma (bile duct/liver cancer).
So, now you’re caught up! Follow along on the main page for updates from my doctors, treatment plans, and what’s ahead. If you have questions, check out the FAQ page 💕
xoxo,
Kyra 💋✨
Hey babe, it's Kyra! 