Wednesday, November 11, 2009

Georgetown CFS Study: Day 1

Please see I'm in the Georgetown CFS Study for background.

It's very late, but I felt the need to write a quick post about the Georgetown CFS study that my husband and I are participating in.

Kenny and I arrived in Washington, DC late last night. Here's the best part: no migraine! My dad picked us up, and we spent the night at my parents' house.

This morning we checked into Georgetown University Hospital and immediately started getting down to business. In addition to going over our complete health histories (mine took over an hour; Kenny's took about two seconds), we did pain testing (not as bad as it sounds), strength testing (turns out I'm not that strong...big surprise), pulmonary function testing (the exhausting part was when they made me hyperventilate intentionally), a couple of other random tests (like measuring my nasal passages), and had blood drawn. All this took all day and went into the evening.

Somewhere in between tests, they let me sleep for about an hour and a half because the testing was so exhausting.

Tomorrow is the cheek swab, lumbar puncture, and urine collection period, and Friday involves more blood tests. We'll be released around noon on Friday.

And believe it or not, the hospital food I've had so far (lunch and dinner) has been great! Well, except for the green jello, which I found to be questionable.

I haven't felt nervous about the lumbar puncture so far, but Kenny has a lot of anxiety. I am hoping he feels OK to do the procedure tomorrow. The hospital staff has been amazing. The primary researcher and his assistants are fantastic and have a wonderful bedside manner, and the nurses are quite attentive.

I'm really excited to be a part of this study!

That's it for now, I have to sleep.

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, sensitivity to light, exhaustion.

Mood (10 is best): 7
Energy (10 is best): 4 (after my nap)
Physical Discomfort (10 is worst): 3


Lori said...

You go girl! How interesting to hear what it's like. I hope everything goes well for you both today.
Keep us posted.

Jo said...

You are so brave! Glad the flight didn't trigger another headache. Any idea what made the difference?

Waiting for the next instalment.

cinderkeys said...

Yay! Hope all continues to go well.

upnorth said...

From a fellow M.E./cfser, thanks so much to both of you for doing this!

alyson said...

Thanks for the notes! I will continue to post updates on the research.