I wanted to explain a little bit about what all I’ve been through the past month, and why I’ve not been as active online recently. Everything started on June 30th. I was feeling off that day: a loss of appetite, a chest that ached like I had indigestion, and overall general sluggishness. I figured it was something I ate, or a little bug of some sort, and that it would work itself out on its own. Later that night someone was looking at one of the scars from my ankle surgery and noticed that I had three bright red dots around it. I figured they were nothing — tiny little bug bites, or perhaps new freckles or something.
I kept feeling worse and worse. Something wasn’t quite right. I went to work but getting through my normal day-to-day tasks was harder than it should have been. Then that Tuesday, while eating lunch in my car, I looked down at my leg and noticed that it was absolutely covered in these red dots that looked kind of like someone had drawn all over me with the tip of a red ink pen. I also felt one of my fingers puffing up like I had a spider bite, but it went away on its own after a few hours. I knew something wasn’t right, so I went to the walk-in Medical Care clinic to get checked out by a doctor. He examined me, did blood work, and in the end he told me he had no idea what it was or why it was happening. It could be viral or bacterial, so he gave me antibiotics “just in case,” and said if it was viral it would work itself out.
The dots didn’t go away, but I thought things were on the mend. Then on July 4th I woke up with my hand swollen to the point where I couldn’t move my fingers. Mom tried to get me to go to the emergency room right away, but I wouldn’t go. I told her if things got any worse, or any other body parts swelled up, then I’d go. Things got worse and worse, then all of a sudden around 3pm that afternoon my foot, knee, and other hand began to swell up. I was, naturally, terrified my throat would swell shut or something, so we went to the Urgent Care, who sent me straight on to the local ER. I had my blood tested again for a whole range of things, had my body examined, saw a couple different doctors, and was ultimately four 50mg Prednisone tablets and sent on my way. I took the tablets over the course of four days and the dots began to disappear. I followed up once again with the doctor I saw at the Medical Care for a follow-up from the ER visit, but he didn’t have any big epiphanies, apart from ordering yet another round of blood work.
That’s when everything really went sour. A day or so after the Prednisone ran out the dots returned, with vengeance. I first noticed it starting as big splotches on my feet, then things rapidly progressed from there. What were once non-palpable dots were absolutely horrific, burning, palpable rashes (purpura). I looked like Freddy Kruger. These things covered my feet, my sides, and stomach — pretty much everthing from the chest down. I was trying to avoid another ER visit (the first one cost me $650 out of pocket that night alone), but as things got worse I knew I had to go. Mom picked me up and drove me to the “good” hospital in the next city over. After several hours in the waiting room, then several hours in the ER, I was admitted to the hospital.
I had never been hospitalized before (not even when I broke my ankle and had surgery), so that was a new experience. In some ways it was nice (I actually really enjoyed the hospital food), but overall it’s not an experience I can recommend. You can’t sleep well. Someone is coming in every hour or so to wake you up for one reason or another. I had my blood drawn every morning at 5am, pretty much on the dot. I had to have my finger stuck and my blood glucose levels checked before every meal (those pricks hurt more than the blood work!). I couldn’t leave the hospital bed on my own because of all the monitors I was hooked up to. I constantly had IV fluids running into me, which wasn’t bad at first but by the last day the site where my IV was inserted got really sore and swollen. But the worst part was the waiting. Teams of doctors would come in, look me over, share theories and plans for finding new information, and then disappear. What did I have? Would I be released today? Tomorrow? The next day?
On the second day in the hospital they decided they needed to do a biopsy, which for those of you who are unaware, that means taking a tissue sample (read: chunk of flesh) and examining it under the microscope. Just to be on the safe side, they wanted to get two pieces. I’m sure every biopsy is different, but in this case two members of the surgical team came with these tools called “disposable biospy punches.” Basically they’re jumbo sized pens that, when you push down, cut a ring around your skin and pull out a fairly deep hunk of meat. It’s kind of like those ice cores you see scientists drilling in Antarctica, only it’s made of human — specifically, me. They gave me a local anesthetic (really painful shots to numb everything), then did the “operation.” It took about 20 minutes. Overall it wasn’t too bad, but those suckers hurt for weeks after. They stitched me up and I was ready, once again, to wait.
I ultimately spent three nights in the hospital. The biospy results still hadn’t gotten back, but the team felt confident they could safely send me home after a few days of IV steroids and a twelve-day step-down course of Prednisone. Their initial diagnosis: something called lukocytoclastic vasculitis, but they referred me to see a rheumatologist ASAP to figure out the underlying autoimmune condition.
The story here gets repetitive so I’ll spare many of the details. I followed up with a doctor a few days after being released. She ordered yet another series of bloodwork. Then I was sent to the rheumatologist, who — surprise — ordered even more blood tests (nine vials in one sitting!).
Fast-forward to today. Most of the spots have disappeared, or at least faded. I’ve been off of steroids for several days. I went back to the rheutmatologist this afternoon (or really yesterday, since this won’t be posted until tomorrow), who finally had all my results and could officially make a dignosis: IgA Vasculitis (also known as Henoch-Schönlein Purpura or HSP). It’s relatively common in children, but pretty darn rare in adults. My rheumatologist said she’s only ever seen three cases of it in adults (mine included), and that mine is the only one she’s seen with the swelling in the joints. Usually patients present with stomach and colon issues that mimics appendicitis, but once again I show my uniqueness by having a strange presentation. There isn’t a known cause for the disease, but it usually develops following a viral infection of some kind. There’s no “cure” for it (it could flare up again at any time for no reason), but typically it’s treated with either six months of steroids or a year of immunosuppresents, after which people often go into “full remission” and may never experience it again.
The only problem is, IgA sometimes causes kidney damage, and all my urine tests have shown blood and protein, which is cause for concern. I did one final “spot urine test” today. If the levels come back the same then I’ll be referred to Vanderbilt for a kidney biospy (which I really would rather avoid all things being equal). So fingers crossed for no blood or protein!
But that’s where I’ve been. As you can imagine, I’ve felt pretty crappy through all of this. I haven’t had much energy for my usual stuff, so unfortunately work on the Summer of Vocal has stalled for now, and I haven’t been updating my blog as much. I’m hoping things can now start to get back to normal. Pretty much all of July has been filled with doctors appointments, ER visits, and a hospitialization. I’m defintely ready to move on.
One thing’s for sure though: my 2019 has thoroughly sucked.
