I hesitate to put anything about this on Facebook, but I feel like I keep giving people different answers when they ask me how I’m doing, and people seem to be genuinely concerned about me, so I want to be straightforward.
I’m doing okay. Pretty good, actually. For those who don’t know, I was diagnosed with a rare disease (for adults anyway) called IgA vasculitis. I’m not an expert about it, but it’s a disease that affects the capiliaries and causes various issues. Most of the time it can be managed with steroids.
In some cases, it can cause kidney disease, which it has done for me. Two weeks ago we discovered that I had 3.5 grams of protein in my urine, which is alarming. They sent me for 1000mg IV steroids daily for a few days, and I’m on 60mg prednisone indefinitely now. Unfortunately today I found out that I’m up to 6.9 grams of protein in my urine, so things aren’t improving like they hoped. I see a local nephrologist (kidney doctor) next week, then I see two specialists at Vanderbilt near the end of the month. Right now it’s unclear what will happen but I’ll likely have to have a kidney biopsy done, just to confirm the issues are indeed caused by the IgA vasculitis (they have no reason to suspect cancer however).
Unfortunately, leaking that much protein causes other problems. I’m severely immunocompromised (I’ve been told my immune system is similar to that of an HIV patient), so I take an antibiotic three times a week. If you’ve noticed me avoiding crowds or staying away from schools more than normal, that’s why. I’m also at an elevated risk for a blood clot, but to be honest I’m not particularly worried about that part.
But for those that are worried about me, I promise — I’m doing fine. Some days I feel pretty dang good. Some days I feel a little crappy. Some days the prednisone makes me grumpier than normal, but other days it makes me feel like a million bucks. On average, I’m pretty well. I’m optimistic, I’m in good spirits, and I’m trying to go about my normal routine as much as I can running back and forth to doctor’s appointments and whatnot. Heck, I’ve even gone camping this weekend — life is good!
Thanks so much to everyone who has sent prayers and thoughts my way. Feel free to send more in my direction. But all in all, I’m doing just fine!