Tuesday, December 16, 2008

HALT PKD study

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.


Becky said...

I'm SO happy for you. You deserve some special treatment. How did you get on this study? So am I understanding correctly that if this works, you just need lower blood pressure to make your kidneys function normally? Correct me if I'm wrong. Go celebrate - with a nice piece of red meat! :)

Melissa said...

They could have at least thrown in a massage and manicure! Slackers!

Heather O. said...

A massage and a manicure should definitely be on the agenda. I'll bring it up next time :)

Becky, it's kind of like that, but really, they are seeing if lowering the blood pressure with this specific drug combination, the ACE inhibitor and the ARB, can help slow the process of cyst development. My kidneys will never be completely normal--the grapefruit sized cysts on them have sort of spoiled their beauty--but PKD is progressive disease. Hopefully this drug combo will slow things down. It's not a potential cure, just a potential treatment. But we'll take what we can get.

Heather O. said...

And yes, there are steaks on the grill as we speak, even though it's 40 degrees outside. Can't wait.

I got involved with this study though the PKD Foundation. They were looking for participants, and I actually got to meet Dr. Steinman last year in person, and he asked me to be a part of the study. I'm glad I did, although with all the drugs I'm taking, it solidifies the whole never having another baby thing. But with my kidney function failing so rapidly (lost 40% in 2 years), it probably wasn't really an option anyways. Oh well. That's life, right?

SusanS said...
This comment has been removed by the author.
SusanS said...

I'm particularly happy about your steaks! (My previous comment had an unfortunate typo!)

Anonymous said...

Hi Heather--congrats on getting in the study! I'm still in half denial from when we met at the convention, but my worsening creatinine # has me seriously considering going vegan, not that I eat so much meat now.
Good Luck!
Liz from PA

Kelly L said...

I am so happy to see someone blogging about the HALT study. I had my screening on 12/19. I have to say I am hopeful, too. Washout begins on 1/17.