“…but sure as you’re born,
You’re never gonna see a unicorn!”
Sorry in advance for the long, rambling post but I’m too tired to edit the day’s notes into something more readable.
A blaring alarm awakened us way too early after a fitful night’s sleep. It was followed very shortly by loud, obnoxious music. I groaned, whined, and complained bitterly about getting up. Michael told me to go back to sleep. It was the alarm left over from the last occupant. We slept another hour until 5:30 when our more gentle alarm reawakened us. Michael made me my breakfast shake, and we caught the shuttle at 6:30. Getting onto the NIH campus took awhile due to security. We had to exit the van and present our IDs, as well as pass through a metal detector.
Fortunately, all of my appointments will be in the same building this week, the Mark Hatfield Clinical Center. First stop, admissions to sign initial consents and provide info about where to send results. Then, up to the 12th floor clinic. I was disappointed that I’ve lost more weight despite trying hard to eat extra this week. BP and other vitals all normal range.
We spoke with Kristen, clinical nurse and Tiffani, physician’s assistant. Kristen did consents. Tiffani took an extensive medical history and did a brief physical exam. When I read the literature last night, it sounded like I wouldn’t necessarily get any results or benefit from the study. However, after talking with Tiffani, she indicated she thought they’d be able to help me, particularly with skin and mouth biopsies, and dental, eye, and gynecology exams. Apparently, I’ll get the full set of results sent to me, as well as to Dr. Bahrani and Dr. Jones. One of the questions Tiffani asked was, “Who does the litter boxes?” She says that transplant patients will always be at higher risk and therefore should avoid contact with the litter forever. 🙂
We then got our secrity badges which will simplify getting onto and around the campus the rest of the week.
I had 21 vials of blood drawn and provided a urine sample (never a problem for me).
We had lunch at Au Bon Pain, Thai coconut soup and southwest cornbread with extra butter for me and a turkey sandwich for Michael. After lunch, Michael bought me a lab rat sweatshirt
at the official NIH gift shop. We went for a little walk outside, a beautiful fall day.
Then we headed back up to the 12th floor to meet with Sandy for a lengthy quality of life questionnaire and a couple of quick concentration tests. She was amused by my out loud commentary regarding some of the quality of life questions. “Running? I never did that in the first place! Vacuuming? That’s what the house cleaner is for.” The first test was a simple connect the dots task. The second was slightly more complex: connect a-b-1-2-b-c-2-3-c-d-3-4-d-e-4-5…. It actually got easier as I built up a rhythm.
Time for a chest CT scan now. Since I was wearing an underwire bra and zippered pants, I had to change into scrubs. Breathe in, hold, breathe. Repeat. Breathe in, breathe out, hold, breathe, repeat. That was quick and easy.
Next we saw the nutritionist, Marnie. She believes I would benefit from more protein, zinc, vitamin A, vitamin C and vitamin D in my diet. As a rule of thumb, one needs approximately 10 times his or her body weight (in lbs.) in calories per day to maintain weight. She suggested trying to eat pasteurized egg white in drinks as a perfect source of protein. Cheese is also good, although she doesn’t recommend bleu because of the mold (contrary to my transplant doc who placed no restrictions other than raw fish, meat, and eggs). She said to take zinc and vitamin D tablets (otc is better than prescription/animal vs. plant), and eat colorful foods in sufficient quantities at least a couple of times a week for vitamin A. It’s stored in fat so doesn’t need to be eaten daily. In addition to peanut butter, try using other nut butters – almond, cashew, etc. in shakes and for eating. She’s going to send me some more ideas.
We spent so much time with Marnie that we were running a bit late for Dr. Pavletic, the study principal investigator (PI). We saw him with Tiffani and a dental fellow in observation. The doctor remembered my initial email to him last summer. He asked a lot of questions about my symptoms and did a brief physical exam. He said he didn’t see anything obvious but wanted me to consult with gastroenterology, so another appointment was added to my already full schedule for the week. He said he’d mail a report to my doctors and me with all findings and recommendations and would also talk to my transplant doctor after all the test results are in.
Finally, I saw an apheresis specialist, Karen, to assess the viability of my veins for the leukapheresis scheduled Friday. She concluded that my veins are good and explained the procedure. Blood is withdrawn and spun into its separate components in a centrifuge. The white cells are removed and the remaining cells returned to your body. The procedure takes about 90 minutes and ends up taking about 20% of your white cells.
We caught a shuttle back to the hotel after our 11 hour day. Michael took a nap while I updated my notes. We ate dinner at the hotel.
I am tired! More tomorrow.
P.S. Everyone seemed surprised and impressed that I’d had no immunosuppressants and no infections (knock on wood).