Journey to the NIH

infinite possibilities

My Journey to the NIH In August 2006, I went to the National Institutes of Health to see doctors who are studying my rare platelet disorder (delta storage pool deficiency). It was an amazing, exhausting week. I appreciated the care and expertise of everyone at the NIH so much. I learned a lot and felt reassured that it appears that I don't have any of the complicated syndromes associated with this platelet disorder. Here are some photos and stories from my time at the NIH.
My Room...with a view!
	I was thrilled to find out that I would have a private room, and look at what a nice room it was! The view from my room was of the Children's Inn (kind of like a Ronald McDonald House on the NIH campus).

Around the NIH Clinical Center
	I didn't have a whole lot of time to explore, but I did see the main hallways and the atrium pretty often on the way to/from tests and appointments. It's all quite impressive (and big!).

The Patient
	That's me on Day 2...well, my arm anyway. I was wearing a holter monitor to monitor my heart for 48 hours (which was all normal), and I had a pressure dressing for a skin biopsy (a routine part of the study). By that point, I had also done a 24 hour urine study, seen a gynecologist, had an echocardiogram, had an abdominal ultrasound, talked to the nurse practitioner for three hours about my medical history, and had 24 (of 37) vials of blood drawn. After just two days, it felt like I had been there forever!
	At left: I did have computer access right from my bed. Yay! I didn't have a lot of time to use the computer, but it was great to be able to check in with some people by e-mail. That's me on Day 3. That day involved pulmonary function testing and two hours worth of eye testing. And 10 more vials of blood. At right: Day 4 was really the only day that I truly felt like a hospital patient. The day started with my last blood draws, followed by an IV. Then I had to get a CT scan, which was difficult for many reasons. This picture was taken before the CT scan. (My Mom took a picture of me after the CT -- when I was wearing scrubs -- and I'm pretty sure that picture will look like the very definition of pathetic. I was so drained by then.)

Despite the exhaustion by the end, I'm very glad I went to the NIH and that my platelets are part of the growing body of research about storage pool deficiencies. Some of my blood was sent overseas. The doctor said, "We'll send your platelets to Europe and they'll send pictures back." My mind immediately came up with the image below!
© Sandy
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The NIH trip also involved some sightseeing in DC (the day before my admission) and some pretty views on the drive home. You can find those pictures on my Washington DC picture page.

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