"It is health that is real wealth and not pieces of gold and silver."

"It is health that is real wealth and not pieces of gold and silver."

~Mohandas K Gandhi

Monday, December 27, 2010

Medical science can't do everything yet...

So, you might be wondering how does one treat someone like me?  Basically, you put out fires.  If I get sick, you put me on an antibiotic ten to fourteen days.  Depending upon the antibiotic, I could have zero side effects, or I could have nausea, diarrhea, sleeplessness, sleepiness, jitters, hot flashes...the list goes on.

I am on a daily maintenance inhaler, which I inhale twice daily.  I rinse my mouth out afterwards, because inhaler usage + immune deficiency frequently = oral thrush.  Yay.  Fortunately, I do not seem to experience the same discomfort most do, and most of the time, I only know I have thrush because when I go to the doctor or dentist, they tell me.  I wonder sometimes if, because I've had it so often, the pain recpetors in my mouth are damaged. 

I also take an antihistimine, for environmental allergies.  (Fortunately, I am not and never have been allergic to animals.)  And I am on medication for heartburn now, too.  My pulmonologist thinks the constant throat=clearing I've been experiencing may be because I have acid reflux.  So far, it does seem to be helping, but losing a good thirty pounds would probably help that, too.  I'm not kidding about that, either- people keep telling me I don't need to lose that much, but I do.  I just hide it really well. 

The Big Thing I do now is called IVIG, IV administered immunoglobulins.  Basically, the stuff my immune system does not make is culled from dozens, if not hundreds, of blood donors, and I get an infusion of this once a month.  A home health care nurse comes to my house, hooks me up to an IV, and sits with me while I'm getting the stuff.  I sometimes get headaches afterwards, really bad ones, which is a common side effect.  They even have a name for them- infusion headaches. 

The trick with IVIG is, it costs about $10,000 a pop.  I am not making that number up.  My insurance has been paying for it the last almost-four years (how that came about is another tale), thankfully, but they make me jumps through hoops for it.  Now they're giving me a hard time about it again, and it's so frustrating, I could cry.  They've denied payment on my last three infusions, saying it's because they didn't have recent enough lab work done on me.  I had blood drawn in August!  If they want me to go get blood drawn every month, I'll do it, but don't tell me afterwards.  Believe me, I do not have $30,000 to fork over to the infusion company.  I'll keep you posted on how that turns out.

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