Thursday, August 11, 2011
No, my post is not about a race between a horse and a rabbit. Well, I guess it could be if you look at it from a weird angle... but this is actually a post about my bone marrow.
As many of you reading this know, I was diagnosed with Aplastic Anemia in 1997, right in the beginning of my first semester of college at UWSP. I lived on the 2nd floor of the dorms, and I remember starting up the stairs to go to my room, and about 4 or 5 steps in, I felt very sluggish. My legs felt like they weighed 3 tons each, and I labored to lift them up each step. I got to the landing on the 2nd floor, and my legs gave out and I landed on my knees. I looked down at the floor in shame, shook my head in disgust and thought to myself, "I have GOT to get in better shape. This is rediculous."
I wasn't in that bad of shape at the time, actually. What I didn't know at the time, was that my bone marrow stopped making blood. My red blood cells had dropped and were not carrying the normal amount of oxygen through my body, making me very lethargic. I'd been tired a lot before this stairs issue. But when you go into a clinic as a freshman in college (or a high school student) and tell the doctor you're tired a lot, they will pretty much giggle and say, "get more sleep." It makes sense, I suppose. Staying up late with friends, doing homework, whatever... Well, unfortunately in my case, that wasn't the cause of tiredness!
When I was first diagnosed with Aplastic Anemia, I was told that I was young enough (18 years old) that this "thing" could turn around and be fine. The hematologist I saw at the time told me to go home and continue with my normal life, get my blood drawn regularly so they can monitor my levels, and come back in a few months. So I did. I wasn't hearing anything from anyone about my levels, so I kept busy with my new college life and didn't worry about it. I didn't actually realize at that time what sort of impact this was having on me -- and what sort of impact it would have on the rest of my life.
When I went to the hematology department a few months later for my checkup, I assumed everything was okay. Or the same. But it wasn't. I had a new hematologist, and after sitting in the waiting room for a while, the nurse called us into a conference room. It wasn't a clinic room, like you would normally be brought into. My mom and I sat down at the table (the only reason my dad didn't go was because we hadn't heard anything and assumed everything was okay). The doctor was very to-the-point and let us know that my counts had dropped significantly, I would need blood transfusions right away, and treatment for the Aplastic Anemia as soon as possible.
It's funny the things you say when you're confused, scared, or nervous. My reaction was, "I can't do that, I don't have time. I'm in college."
By that time, the end of my first semester wasn't too far off. So I received some transfusions and they sent me to Mayo Clinic for some more tests, to get me on the Bone Marrow Registry, and to discuss treatment options. I was going to need to receive treatment that summer at the latest.
Oh, and a fun little sidenote: When you have "gotten used to" not having any red blood, then you receive 3 pints of the stuff -- it's like freakin' DRUGS. I was bouncing off the walls... well, more literally, running though the hallways in the hotel we were staying at! It was incredible!!
Treatment options were limited to (1) Bone Marrow Transplant or (2) Antithymocyte Globulin (ATG). My brother was tested as a potential match for a bone marrow transplant, but unfortunately he wasn't a match. At the time, my possibility of surviving the transplant with an unrelated donor was a pretty low percentage, so we decided to go with the ATG. This was not a "cure" like a Bone Marrow Transplant would be, but instead could potentially put me into remission.
Which it did. I received the Horse ATG. It's a treatment derived from horse's blood, and I couldn't tell you how it works exactly, but the best way I've heard it described is that it shuts down your bone marrow, then restarts it. So my computer was shut down and rebooted. My battery was drained and then jump-started. However you wanna look at it, I restarted and have been doing good since.
It wasn't an easy road... I almost lost my life after experiencing a sever side-effect of the treatment. I had several major seizures and was air-lifted to the hospital in Marshfield where I was placed in the ICU and actually read my last rites by a priest. When I came to, I couldn't remember my birthday, who the president was, or some simple math. But after a few days I regained that memory and was told by the neurologist that I shouldn't experience any permanent damage.
There are two types of ATG -- one derived from horses, and one from rabbits. And the AA&MDSIF just put out an email talking about a study that was done between the two treatments... and that the horse has been more successful than the rabbit. It's hard to think of whether or not you might live or die based on a percentage, but sadly, some people are stuck making a decision -- I went with 80% instead of 60%. And you just can't think about it too hard -- you just can't think about which bracket you're going to fall into... you just have to shrug, smile and say, "Eh... I've got this." For me, mentally, that's all I had to work from.
Thanks to God, my doctors, nurses, mom, dad, friends, family... I made it. And I always stress that I didn't do it alone. It was "our journey." And I could never, ever, in any way whatsoever, say "thank-you" to those that got me through this in a way that would mean it as much as I want to mean it. Humbling.
Oh... and dare I forget to say thanks to whatever horse(s) were involved, too. And thanks to ALL the horses and rabbits that are helping so many others. Right now, sounds like the horse is in the lead, but they're both working harder than ever, and still saving people, so way to go Horses and Rabbits!!!! I'm rootin' for ya' both! :)