09/20/2016-It's been a month. Since then, Steven continues to have a rash and also had a sore throat with cough. We have been trying to get out but the minute someone starts coughing or blowing their nose, I want to send HAZMAT in to take care of any infectious agents. We check in for his blood draw and then go to clinic. Our clinic has been moved to the 3rd floor....the hall is lined with children's drawings. Ugh....pediatrics, so unfair. While I scan the area for any moving petri dishes we check in to our new surroundings, and I'm confused. Steven is the only person in the waiting room with a mask on and I feel we are in the wrong place.
One of the nurses from the CMV study that Steven is in comes to speak with us. She says our part of the study is over. If you'll recall, when Steven was admitted to COH he was approached to participate in a CMV (cytomegalovirus) study. When CMV+, the virus can cause major issue to the BMT patient when it becomes active. Participants were given either a placebo or a vaccine to neutralize CMV. She said the study monitors patients for a year and their data (blood draw and general overall health) is compiled. When the study is over, we want to know what Steven received...morbid curiosity! And of course, we want to read the paper that will be published. We won't know anything before that.
At clinic, our oncologist said our results look pretty good except those pesky kidney function tests, BUN and creatinine. The questions begin, and we think between the hot weather, medications and Pseudophed for the "cold", his kidneys have rebelled. Drink more water. Steven still has the rash on his chest and neck so they want to see us in 2 weeks, which is our one year anniversary. I won't remember all the tests that will be ordered but it includes a comprehensive blood draw, chest X-ray, ECHO, pulmonary function, flu shot and vaccinations! Even though Steven has a mild case of GVHD, they want him to decrease one dose of Tacrolimus each week. The goal was to be off all anti-rejection at one year but that clearly is not going to be the case.
As if this wasn't enough fun, we have an appointment with the endocrinologist. Steven has been continuing to monitor his glucose with daily finger sticks. Our insurance will not support the glucometer we currently have anymore (even though they told us to buy this particular model) so we need to find out which one the endocrinologist will recommend. The Dr. is impressed with Steven's glucose levels and his A1C is just slightly above normal. He concedes that Steven's glucose levels were medication induced and that his body has readjusted. He stated that not every patient's levels return to normal, and struggle with Type 2 Diabetes the rest of their lives. This was pretty important for me to have this stated in his chart. Type 2 Diabetes would have, not only an affect on Steven's health, but would impact our health insurance rates. And the bonus, Steven's fingers get a reprieve and he doesn't have to check his glucose anymore and we do not have to replace the glucometer. We don't have to see the endocrinologist for 6 months, time for his body to adjust after holiday food!
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