my life as a guinea pig

I can't believe it's been almost a month! I never intended to go that long without posting to this blog. Blame it on too many deadlines and too many hours on the road.

Even though this blog is more about my life than it is about Marfan's--because other people have that really well covered--I do want to talk a bit about my current experience as a medical guinea pig for Marfan's.

Last summer, when I was in for my annual cardiac check, my cardiologist told me about a study being run out of Brigham and Women's Hospital in Boston (There's info at http://clinicaltrials.gov/ct2/show/NCT00723801.)

Turns out, it's not so easy to find adults who fit the profile for this study, because most people with diagnosed Marfan have had some sort of cardiological "incident" and have had surgery. Not me.

I've also never taken any beta blocker, because as those of you who have ready earlier entries in this blog know, I never saw a reason to. No one in my family has ever died of any complications from Marfan and I would bet cold hard cash I am the third generation to have this condition.

So now I'm taking either Atenelol or Losartan--only my pharmacist knows for sure. It's been interesting. I take the pills before bed, but at first I definitely noticed I felt more tired when I got up in the morning (beyond the normal late in the week omigod-I-can't-get-up-to-the-alarm another day tired.

Now I don't notice anything much, unless I have to climb a hill first thing in the morning. Then I'm pretty whipped. I'll be going off the medication in another three months. I'm looking forward to seeing if there's any sort of difference afterward.

So, this has been my bit for science.

The one thing I do know is that seven years ago I would have turned down the cardiologists' suggestion that I participate in the proverbial New York minute. I would't have wanted to be involved. Of course, back then I didn't know how I was going to live with this, and now I know that, for me, Marfan's is basically one more thing I know about myself, like my blood type (which I've forgotten), or my IQ (nope, not sharing that). Marfan's is not scary--any more. It's not something that has made my life turn out for the better (gag me). It simply is.

More soon, I promise.