Tuesday, October 4, 2011

Big H is for Hospital

Big H is for Hospital, and they know me oh-so-well here!

At this moment, I'm at Johns Hopkins, hooked up to an IV for a 3-hour infusion of life saving medicine into my body. This might sound dramatic, but I do it every 8 weeks to keep my immune system from eating itself. I have an auto-immune disease called Takayasu's arteritis. Basically, my immune system thinks my large and small arteries are bad, so it actively tries to destroy my large and small arteries. (That's bad, FYI.)

Without medicine, my blood pressure goes up as my arteries become inflamed. All this internal pressure leads to poor circulation throughout the body, less oxygen and nutrients circulating, and increased stress on the arteries. The decreased circulation means I heal super slow, more tired than the average 20-something, and am much more clumsy. Which is a great combo: I clumsily run into things, and then it takes forever to heal from the bruises I get! Under all that pressure, these arteries balloon out in places to attempt let the pressure out. This is how I got the (very life-threatening) aortic aneurysm. Or at least this is my 5¢ understanding and summary of the medical factors at play.

But thankfully, I have medicine! We (and by we I mean my team of doctors) usually have to tweak the medicinal cocktail from time to time to suppress my immune system. The heavy hitter is this infusion I'm getting now. Thank you Jesus for health insurance!! Without health insurance, this treatment would kill me - or at least my pocket book. This medicine is about $9,000 a treatment. At 6 times a year, this treatment alone would come to $54,000 annually. That's more than I make before you even take out taxes, and that's not including all my other medical treatments.

Aside from coming to the hospital every other month, I take a slew of medicine and supplements every morning:
  • Coreg CR for blood pressure (ugh, and it's about $50 a month)
  • Prednisone for inflammation and immune suppression
  • Cellcept also for immune suppression
  • Asprin as a blood thinner and for pain
  • iron, folic acid, calcium, potassium (all the medicine drains these out of my system, so I have to actively replace them.)
  • 2-3 Emergen-C packets a day to restore electrolytes. I've found out since this summer and spring this makes a HUGE difference in my lymphatic return (big word for circulating fluids throughout your system).

So this is why when I get headaches I worry that I have a brain aneurysm. Or why when my heart starts to thump too hard I worry that it's exploding. Or why when I see a bump on my skin I think I've got cancer.

I'm not normal. But I like it that way. My health keeps me humble.

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