Being a research study subject rocks.
I just got back from my screening appointment to be a part of the HALT PKD study, which Dr. Steinman is conducting out of Beth Israel Deaconess Hospital, in conjunction with Harvard Medical School. It was actually kind of fun.
They took some blood, fed me, talked to me about every detail of my life, explained the study, gave me some info, explained the study again, took some urine, fed me again, and then let me talk to a dietician who told me that she's more concerned about increasing my intake of broccoli than she is about restricting red meat. (Woo-HOO!) They paid for everything, including cab fare to and from the hospital, as well as my plane fare. This is good stuff.
So, what is this study? I'll try my best to explain, although I'm sure my own understanding isn't quite right. Basically, they are trying to figure out if keeping a low blood pressure using ACE Inhibitors and ARBs (Don't ask me what that stands for--I've totally forgotten, as it was a seriously $5 word) has a positive effect not only on hypertension, but also on the development of the kidney cysts themselves. And, if it DOES have a positive effect, they want to know how low the blood pressure needs to be--standard, 120/80, or lower than that?
If somebody else has a better explanation for the HALT PKD study, please share.
Anyways, right now I'm in "drug wash-out", which means that they took me off the ACE inhibitor I was on, and put me on a beta blocker (which doesn't have anything to do with kidneys) to keep my blood pressure under control as my system washes out the lisinopril, the drug I've been taking for the past 6 months. That's the ACE inhibitor they want to do the study with, so I have to start with a clean slate, or, in this case, clean blood, if you will. I need to take my blood pressure every other day, 3 times a day, and this beta blocker once a day. Then I go back at the beginning of January, and things really get moving then. I'll give them more blood and a 24 urine, and they will give me an MRI and hopefully a few more free meals.
I told my parents all of this, and my dad said, "Who is going to pay for all that? Does your insurance cover this?"
Oh, the beauty of being a research subject. I pay for NOTHING, nada, zippo, zilch, and I get my kidneys imaged every 6 months. Even in these tough economic times, science has to go forward. Harvard, whining about losing millions from their endowment in the last year, still has a few million sitting around, and NIH can apparently still afford to cough up some dough as well.
And being a study subject is way better than being a patient. I didn't even have to put on one of those goofy gowns. I was hardly left alone, with everybody coming and going, and they were quite willing to cheerfully serve my every need. This is all still taking place in a hospital, of course, so it's not like I'm hanging out in the Hilton or anything, but it's still the nicest hospital room I've ever been in (except for the room where I delivered my daughter. Now that WAS like a hotel room, complete with pull out bed for my husband, but the recovery room totally, totally sucked, which makes me feel like it kind of made up for the earlier luxury).
So, I've got a new blood pressure cuff and some new meds, and I got to say hello to a city I dearly love. Not a bad start to the week.