On the eve of my first complete week here at the NIH Clinical Center all I have to say is "WOW, what a week!" But let's get up to speed with the events of yesterday.
Friday started (if you don't count the 2:00am blood draw) at 7:00am with more vials of blood being taken for neurological tests. According to the neuro Docs, we are "hoping to find nothing". I can almost guarantee that will be the case...
After that, I was on call for the major IPSS (the one we went to St. Louis to have in early June) test. So I sponge bathed, got my hospital gown on, and waited. My number came up at about 11:00am and then things started to move at the speed of sound. An excort with a wheel chair was sent for, papers and records were arranged, calls were made. DC was mobilized! I got wheeled downstairs to the 1st floor nuclear medicine department where Dr. Chang, the performing physician, discussed the procedure with me and got me up to speed with what they were going to do. Good thing I'd had it done before! And I'm such a dork I just kept saying "how cool!". Then I got wheeled into the big room by Steve, a very, very tall nurse. Sorry, but these are the things I notice. The nurses and Dr. Chang got me all prepped, situated, IV'd, and off we went. I was awake during the procedure, but had some loopy juice running through my system. And I know that more than a few of you reading this right now are saying to yourself "how can you tell?". Ha, Ha, very funny.
The procedure itself involved running catheters through veins in each groin up to my pituitary and getting them into the base. Then they take samples, inject goo, and take more samples at specific timed intervals to measure the goo's effect on cortisol and ACTH production. blah, blah, blah. Have your eyes glazed over yet? It is a pretty cool process just because I'm amazed it can be done. But we learned that I have tiny veins going into my pituitary, so they couldn't shove the catheters in as far as they wanted. We will have to see if that is a variable that comes back to haunt us as we get further down the diagnostic road...like on Tuesday! Anyhoo, unlike when I had the test done in St. Louis, my doctor had the results of the test to go over with me by 6:00pm, and they had already had a team meeting on them before Dr. Neary came to see me. This is just another reason I am such a lucky girl to be here.
Bottom line is that this test neither ruled in nor ruled out the pituitary as the cause of my Cushing's. The results were in the negative range, but close enough to the positive cut off that the team was not ready to call it one way or another. All of these tests build on each other and are taken as bits and pieces in a big puzzle. The gaggle of medical professionals working on my case has already been sucked into the mystery...and that's a good thing.
If things go according to plan for me today, I'll be taking my bus tour of Washington DC at 1:00pm. It's an activity organized through the Recreational Therapy department here at the NIH Clinical Center and I'm really looking forward to it. Not only have I never been a tourist in DC, but it'll be fun just to get out of here for a few hours and forget about being poked, prodded and scanned for a while. Not that I'm complaining!! I will hopefully be able to share my outing with you here - I'll try to take copious pictures!
Haikus are coming!!
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