Day +323: Have you ever stopped to think about what rats do for fun?

“Sure they crawl around and scurry…”

Same excuse as yesterday – I’m too tired to edit the day’s notes into something more readable.

I didn’t sleep well.  Why is that you always seem to fall sound asleep right before the alarm goes off? 

This morning’s trip to NIH was greatly facilitated by our security badges. 

I started off the morning by “donating” three more tubes of blood. At least it was quick and easy. We then headed up to 5th floor for my pulmonary function test.

The pulmonary specialist, Mark, administered a wide variety of lung capacity and functionality tests. I sat in a glass booth with a bunch of tubes, with an attractive view out the window of the children’s lodge and fall trees. I was even treated to a full rainbow. The hardest part of the test for me was having to wear the nose clips. The albuterol also made me a bit jittery. 

Next stop, dermatology with Dr. Cowen on the 13th floor. Fellow Dr. Niak asked a lot of questions about my symptoms, even those unrelated to dermatology. She did a full body examination. Dr. Cowen also asked a lot of dermatology and other questions. They seemed equally interested in the gi and skin issues. My lacy hyperpigmentation is typical of gvhd but it looks like it is healed/healing/older. One spot on the back of my neck looked more active. They biopsied it along with ordinary tissue on my arm to compare. The insect-bite-like spots apparently don’t look like gvhd. They took a small biopsy of one behind my ear. They suggested it could be a type of skin mite. I need to go to my primary care doctor to get the stitches removed in two weeks. I was worried about a couple of dark spots on my toenails but the doctors didn’t think they were a problem. The dermatologist was not encouraging about my hair getting a lot thicker, based on how it looks now, nearly 11 months post transplant.

I had a big (for me) lunch at the hospital cafeteria – a half portion of salisbury steak, mashed potatoes and gravy, cooked carrots, and yogurt.

After lunch, we went back down to the first floor to rehab. Dr. Galen Joe, physiatrist, asked a lot of questions about my medical history and current symptoms. I then did strength tests, range of motion, and endurance. I was timed walking six minutes as fast as I could with vitals taken before and after. Dr. Joe said I was 100% for my age except I was a little slower recovering afterwards.

I dashed up to the eye clinic on 10th floor (using the elevator, of course). The technician, Debbie, administered a standard vision test and then numbed and dilated my eyes and administered two schirmer tests. Both eyes were 3 both times, i.e., moderately dry (normal is 10). Dr. Datiles did a thorough eye exam, including dyes. He noted that I do have some cracks and gunk, signs of extended dryness. He also confirmed a definite diagnosis of gvhd in my left eye and also probable, although less severe, in my right. He prescribed Restasis (dilute cyclosporin) twice a day and said I may have to use it always unless the gvhd burns itself out completely in 5-10 years. I admitted that Dr. Akpec (who he knows) at Wilmer had prescribed the same but my understanding was that she didn’t think I have eye gvhd. Of course that’s entirely possible since Restasis is used for dry eye in either event. This time, I will take it as prescribed. I should have before.

We went to the pharmacy to pick up the prescription before catching the shuttle back to the hotel. It was a long wait for the drugs but they were free.

My gi appointment got rescheduled for tomorrow.

Today’s doctors were again surprised and impressed that I’d had no immunosuppressants or steroids.

We were too tired to go out for dinner tonight, even after a nap, so ate at the hotel again.

Goodnight all!

One Comment:

  1. Listen to the doctors. Take your prescriptions as directed. 🙂

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