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.