Everything started when I was 10 and fell off a swing. I was in a lot of pain and had quite a nice bruise on my foot, so the doctors thought I had broken or bruised some bones. A year later, the bruising was gone but I was still having pain, and the pain was coming from up higher. The doctors X-rayed from my hip to my knee, and found two nickel-sized holes in my femur.
I have what’s called an AVM, or an arteriovenous malformation. It’s when a bunch of blood vessels are clustered and tangled together, and the blood doesn’t circulate well in that spot. There are different kinds of AVM, but they’re usually found in the brain. My form is rarer. Everything sort of wrapped itself around my femur and then broke through it. AVMs can be removed by surgery, but mine has already done so much damage to my femur that you can’t remove it without compromising the structural integrity of the bone. There’s an old X-ray showing my leg looking like a Christmas tree because of all of the stuff they put into it.
I’ve had a lot of surgeries. I had my first the summer before eighth grade, and I’ve had 19 since then. Puberty and surgeries: That was not fun. I did it with a lot of support and a lot of things that I knew would make me feel better. In the hospital after a surgery, once I was out from under the anesthesia and cognizant, my mom would put on comedians like Jeff Dunham and Ellen DeGeneres. I usually had a stuffed animal that rode into surgery with me on my shoulder. And I made sure that I was educated, because I wanted to know what was happening to me, who the doctors were, and how they were taking care of me.
That way I could trust them while I was asleep.
Because what I have is so rare, I made a book that I could show doctors if they hadn’t already heard of the condition. I started it last year because I was tired of having to whip out my phone to show pictures to doctors. I looked up all of the conditions on the Internet and printed out pictures because, well, I suck at drawing. And I figured that if the doctors could read blurbs from a medical journal or whatever, it would help them quickly understand it, because people have said so many times that they’ve only seen what I have in textbooks. There are detailed notes of everything, procedural notes. Having the book is very comforting and writing it was a catharsis.
I’m majoring in chemistry at UC Riverside, and I want to do medical research and development. I want to think like a scientist, but I also want to think like a patient, and the book is part of that. There are tons of amazing doctors out there, but some doctors were so fascinated by my case that they forgot I was a little kid.
I don’t have any surgeries scheduled right now. I go back for monitoring every couple of months, but I’m done growing, everything looks stable, and I’m not in any pain. So the doctors want me to just enjoy my college time, whether it be my first midterm—which I had today—or doing my laundry by myself for the first time. That was interesting!