i heard from my doctor in philly yesterday. she can’t say definitively yet — she wants to wait for my post-test, and she also wants to consult with some colleagues — but the signs are pointing toward treatment. apparently, my sinus scan showed i am quite the veteran with sinusitis (i wonder how they can tell that!), and only 3 out of 14 pneumococcal IGG Types were in the protective range (they usually hope for 7 or 8). my chest scan showed little thingies (yes, a medical term) lymph nodes, but as they are smaller than (i think she said) 4 cm, they aren’t considered significant. people with CVID usually show definite signs of never-ending sinusitis and/or some broncheo-something. (basically, lots of bronchial issues/pneumonia/that sort of thing. sorry. my brother could probably speak about this in more intelligent terms since he is both a doctor and a person with CVID.) i have been congested so long in my life, i don’t even realize i have sinus issues. so it looks like i’ll be hooked up to an IV every 4 weeks for the “foreseeable future” (which must be the euphemism doctors use instead of saying “for the rest of your life.”)

it sucks, but there’s a treatment, so it’s not as bad as something without a treatment. i’m not thrilled with the treatment, as it is expensive, has some risks, and is not the sort of thing i want to have to do every 4 weeks. but you gotta do what you gotta do, and i’m thankful i have health insurance and the ability to get treatment, as there are probably zillions of people who aren’t as fortunate.

still, i’m bummed.

many people are pissed that i haven’t actually written about my trip to philly to seek a second opinion. i’ll start to remedy that here.

i met with my brother’s immunologist in philly early in feb, and i’ll see her again in early apr. i really, really like her. she, of course, is also a researcher as well as an MD, so she has a very curious interest in the freakshow that is my brother and i. and she already is very familiar with his case since she’s his doctor, so i finally don’t have to explain everything 🙂 i get the feeling that there are two schools of thought vis a vis my treatment. the dr. in bethesda is from the cautious school — he wants me to go on IVIG already because while i am currently not in much danger, he’s afraid that down the road, i will get an infection and it will throw me for a huge loop (especially since i am allergic to several antibiotics). so he’s in the preventive camp. dr. philly, i am sensing, is not as impressed with my numbers (my IGA is in the toilet, but my IGG is merely low) and may just have my immunoglobulins monitored every 3 months or so to see whether i am going south, so to speak. of course, she had me take another HibB immunization so that we could see whether my antibodies rally; i have to go take the post-test on wednesday and we’ll see how i did. i am probably the best immunized grownup in the DC metro area. she’s checking my t-cells, my immunoglobulins, and all sorts of stuff. on the bright side, my platelets seem to still rock 😉
the thing that bothers me more than it bothers my brother is that if this freakshow is genetic (and it appears to be so), then i wonder what this means for my kids and his. i am interested in looking at our genes; my brother feels that if it would impact my treatment, he would go down that path. but if it won’t make a difference, he just doesn’t want to go there. i figure i am fucked as far as health insurance goes, anyway, should i ever switch policies, since i already have a diagnosis of common variable immunodeficiency, so why not check it out. we’ll see what hilarity ensues.

in the meantime, dr. philly told my brother that if i can drag my ass up from DC to see her in PA, the least he can do is drag his ass to PA to take me to lunch after my appts 😉 gotta love this chick. her office staff is screwy, though. they literally moved offices last week, so my reports all went to some place in the sky. i’ve been having stuff re-sent like there’s no tomorrow. i have to prove to the blood folks (quest) that i really am me and really want this stuff to go to my doc’s. sheesh.

so cheer on my antibodies, y’all; last time, they did a little something, though not what a normal (ha!) person’s antibodies would do. i imagine that if we really looked at them, we’d see that they’re probably napping or eating chocolate.