Alyse Booth's Personal Profile
Campath Trial: Day 2
August 10, 2010. 8am. Picc-line (double) inserted. The preparation takes longer than the actual procedure, so I watch TV while the nurse is getting everything ready. She tells me that at NIH they take major precautions to prevent infection. Their infection rate is only one to two percent vs. five or six percent in regular hospitals. To make sure the line is inserted correctly, they do a chest x-ray immediately afterward.
When I get back to my room, Steve is carrying a giant queen-sized blow up mattress he has borrowed from his nephew. No one has seen such a large mattress in a patient room before so I think we may start a trend! Steve is here to stay and I am relieved that he will be with me throughout this ordeal.
Soon after the picc-line procedure, Dr. Scheinberg, who I find interesting because he is from Brazil, and Donna, the nurse practitioner who orders all meds and procedures, come into my room. They are followed by a small entourage of "fellows," physicians who have finished their residencies and are at NIH for additional training. Dr. Sheinberg says "What 'cha got?" I am confused by the question and reply: "I have Aplastic Anemia but you already know that." Donna translates for me. "He wants to know what questions you have for him," she says. Although he is from Brazil, he has only the slightest accent, so I don't think "What 'cha got?" is a translation of "What questions do you have?" from the Portuguese. I am pretty sure it is doctor speak, a language I am somewhat familiar with. When Dr. Roboz was considering sending me home after ATG, she said: "Let's spring you." I have finally gotten used to "two bags of red and one of platelets." My main question is "How bad will the Campath reactions be?" Dr. Scheinberg says that I may have reactions such as rigors (body shaking uncontrollably), nausea, low blood pressure, and rash at the beginning but is confident that they will diminish as the days pass.
About 1pm I go downstairs to have the holter monitor removed. That takes two seconds. Then back up for D-Day One: the intravenous one mg. dose of Campath. That is one-tenth the normal dose. Before the nurse gives me Campath, she puts on a blue coat that looks like a hazmat outfit. The small dose takes only about an hour and seems benign as it goes in, but about 15 minutes later I have horrendous shakes. Although my legs are moving uncontrollably, they feel paralyzed. Lisa had warned about this possibility, so I am ready for the nurse to pump Demerol into my picc line. (Thank God for the picc line.) Within seconds I stop shaking and feel as if I am lying on a cloud. I drift off to sleep for awhile and when I wake up I feel drowsy but okay.
We quickly realize that the night nurse will visit between 4am and 5am to take my vitals and blood and, dragging a large scale, weigh me. (Who said the hardest place to get a good night's sleep is in a hospital? That is so true.) I can't figure out why they weigh patients in the middle of the night but they must have a good reason. Thanks to our little friend, Ambien 5 mg, both Steve and I fall back to sleep after the wake-up.
Next: Campath Trial Day 3