Wednesday, October 08, 2008

HALT PKD study

I'm in.

Dr. Steinman persuaded me by saying, "Hey, you wanna do it?" Seriously, how can I resist such mind control?

Actually, truth be told, I'm doing it mostly for my mom, who thinks that if I am under the watchful eye of Dr. Steinman, perhaps everything will turn out okay in the end. I try not to tell her that she's in denial, that just because Dr. Steinman is you know, THE guy, that doesn't mean he is God and can reverse the whole kidneys turning into pus-filled bags of slime process. (That last part is a quote from my husband. I keep trying to tell him that cysts are fluid filled, not pus filled but he retorts, "Pus is fluid". So, just go with it.)

I'm actually kind of excited to be a psrt of this study. With my work as a speech therapist, I'm not unfamiliar with research methods and significance ratios. Although I may have just misused that term--it has been a while since I took research methods, I guess, so maybe all I'm doing is proving that I'm basically clueless after all. Whatever. What I'm trying to say is that I think medical studies are cool, I've read a lot of them in graduate school, and it's fun to think I'll be a part of one. And, if along the way, I get to rub shoulders with the people who are the best in their field, well, bonus.

Of course, thre is also that extra added perk of a paid trip to Boston twice a year without my kids. Not that it's always fun to be somewhere without the people you love, but sometimes it is. Yes, it is.

Some of you asked how I am feeling physically. I'm doing pretty well. I haven't had any side effects from the new meds. Quite the opposite, actually. I feel a little bit more energized with them, which makes me think I was definitely feeling that "fatigue" side effect with the last batch. Of course, it could have also been the whole baby not sleeping thing, too. Being up all hours of the night tends to lead to fatigue, too. Go figure.

So overall, things are good. I recognize that this will not always be the case, and I'm grateful. So grateful. Seriously, nothing like having a life threatening disease to make you appreciate the little things. And the little things are pretty great right now.


Di Hickman said...

very cool! Keep us posted on the study! Glad you are feeling ok despite the pus filled bags on your kidneys lol! Husbands eh?

Becky said...

you are so amazing! LOVE your infectious positive attitude. Thanks for always reminding us that life is to precious to take for granted!

tracy said...

Awesome on the study! What great news...

Pus filled bags. Yeah, that image is going to stay with me for a while!