Friday, January 02, 2009

Wash Out

I'm not a very good research subject.

I'm in the last few days of the "wash out" stage, where I go off all my previous meds to I can start clean for the HALT PKD study. The assignment is simple--take my new meds every day, and take my blood pressure every other day.

Apparently, that's just too much for me to handle.

Yeah, over the holidays, I had a hard time keeping up with the blood pressure readings. I did the best I could, and never skipped more than 2 days in taking a reading. Does this mean I get kicked out of the study? I hope not, but in a few days, I will be returning to Boston with a sheepish face and an incomplete log. Do you think they will still give me free food?

I'm actually a little nervous about this next appointment. It's a biggie, with the MRI looming large. I've had two previous MRIs, and I don't like them. I do okay, and I keep myself calm, but I come up with all kinds of scenarios that creep into my mind as I'm lying motionless, unable to move or help myself in any way. One time I imagined that there was a terrorist attack on the hospital, my technician got hit on the head, and I was stuck in the machine, alone, and died of thirst because nobody knew I was there. Since an MRI machine's walls are like a mile thick, nobody would hear my screams.

Yes, I know. I'm totally morbid. When I tell my husband about this kind of stuff, he's constantly amazed at my totally freaky imagination and tells me I should write a murder mystery or something. You know, so I could get paid for freaking myself out.

Anyway, I'll keep you posted on the appointment. And if anybody has tips on getting through an MRI that don't involve imagining a terrorist attack, I'd love to hear them.


Deborah said...

I just discovered your blog today and have enjoyed reading about your journey and have found it very informative. I was diagnosed with PDK in June of 08. I was not one to visit the doctor, but when I noticed a large lump just below my left rib cage, I thought I'd better have it checked out. I was immediately scheduled for a CAT scan and 3 days later the doc called with the news. He told me to look the disease up on the internet and scheduled some additional lab tests. Those results came to me in a letter with the hand written comment "everything looks fine, lower salt intake and have blood pressure checked and labs in 1yr" My creatinine level is .9 which is within the normal range, but I have no earlier number to compare to. I guess I will have to wait until I go in again in June to find out if things are going downhill. I never got to see the pictures from the CAT scan, so I was suprised to hear that you have so much information about your kidneys. I look forward to reading about your participation in the Halt study.

Becky said...

Oh...MRI' nemisis. I HATE them. I have yet to figure out how to get through the torture (much like the dentist chair). I'll let you know when I do. In the meantime, would an IPOD help? Good luck and don't feel so guilty. For crying out loud, we're MOTHERS! :)

cyd said...

In her book, Surviving Cancer, Margie Levine wrote about her MRI experiences: While lying for endless hours in the claustrophobia-inducing tunnels of hospital MRI machines, I made use of a special visualization. I allowed my mind to turn the ear-blasting banging of the machine into the visualized imagery of hovering angels hammering at my tumor with golden axes. Chip by chip, piece by piece, I envisioned my tumor decreasing in size."

Perhaps your cysts will respond to those angels' hammers too.

Andrew said...

So I know you've already been to your appointment and it turned out to be an open machine so no freaking out necessary, but I just have to say this anyway: VALIUM. (Or would that mess up the results??) I had a closed MRI (in Washington, D.C. also, interestingly enough) and they asked if I was claustrophobic and I said YES, YES, A THOUSAND TIMES, YES so they gave me this nice little blue pill with a "V" cut out of the middle and I nearly fell asleep in the MRI machine, which was a bad thing because they needed me to hold my head just so. I just wanted them to leave off bothering me so I could catch some ZZZZ's!!! Not freaked out at all. :)

(The ID says Andrew but this is MB.)