Tuesday, September 22, 2009

IT has entered my system

So I've started this new drug, for Pulmonary Arterial Hypertension (PAH). It's toxic, perhaps not like chemotherapy, but I still wish there existed some sort of support group. Actually I've wished that there was some sort of support group for general congenital heart defects. There aren't (in this small city). There are many cancer support groups, but not congenital heart support.

I'm trying not to think about the side effects, I'm trying to think about other things (I have much to do after this entry to take my mind off this new designer drug spinning about in my system). I hope I'm a lucky sort: that I don't experience the very bad end of the side-effects. I never did like throwing up even when sick. It's not something I want (then again, who would welcome it?)
I wish I knew others on this drug. I wish there existed non-medical information (phenomenological).

Actually, I just took a moment to look up non-pharmaceutical company sponsored monographs and it seems there's a side-effect that's more disturbing than vomiting: death. And that side effect wasn't in the -.05 percentile. It was much higher in teh 2006 FDA reports. I'm sure there's some way to explain it - otherwise my Cardio-man wouldn't have prescribed it for me. Then again, one can never know what and how a drug will react with some one's body. I dunno, 640 deaths is a lot in a group of no less than 3000. I never did well in stats, but that is a stat that's not well! I realize there are other variables (such as the fact that most people given this drug are on their way out anyway) but it just makes me itch.

The last time I took any sort of heart-related meds I was a child. By the time I hit 12 I hated what I was taking so being the stubborn-know-it-all that I am, I stopped taking them. I wanted to prove that I was pumped with pharmaceuticals from the time of infancy to 12 for nothing. I really truly believed it was just a waste or money and taxing my liver etc. And you know what, when my pediatric Cardio-man found out and ran a bunch of tests, they realized that those paediatric heart meds did squat. (No worries, I'm not so crazy as to go off these Designer-meds without some discussion and consultation). But that little experiment shaped how I viewed pharmaceuticals from that day forward: as a money-making scheme for big companies, promising big-dreams to sick people all over. I know that there are meds out there for which work and really do help rather than hinder people. I'm on others for other non-heart stuff but I still think these drug companies rob us silly with their outlandish costs. And besides, what did we do before pharmaceuticals? Plants, faith, courage, etc. That's pretty much how I've lived most of my life - and even for this complicated congenital defect, that was enough. It's no surprise that I'm in heart failure. No surprise. It sucks, but I really did receive so much more life-time than anyone ever thought- including those fancy MD types. Pharmaceuticals? No, avoid them if you can. You really can live without most. Just dedicate a bit more time to the maintenance of your overall health: mental, emotional, spiritual as well as physical.