I have not yet needed to be driven to Chicago, physically, but I do need to have a second driver in the car. It is a long enough drive, and I can get sick so quickly, that I could start a drive feeling fine and not be able to complete it. I do some of the driving, but I also take naps (while not driving).
My family and I are becoming very familiar with the stretch of I-57 between Champaign and Chicago. I think we're even seeing the same hawks sitting on the same fence posts on our various trips.
Whenever I have parked up at the clinic, I have had to go to the very top of the garage before finding a spot. My dad has always found a spot on or near the first deck. Lauren is currently in first place, after finding a spot about 8 cars in from the exit we take to walk across the street to the clinic.
I check in for my appointment and get sent over to Apheresis for my blood draw. Apheresis takes vitals and then sends me over to a different lab, because my doctor wants to make sure the Prograf level test is done on blood drawn from my arm. (My blood pressure is 100/60, which is low for me.) Then it's back to wait for my appointment.
I get called in at 3:00, half an hour before my appointment. Maybe we're going to get out of here sooner than expected. Some questions from a nurse, then waiting in the exam room.
I feel something on my tongue. Like a small piece of food, but I haven't eaten in hours. I pick it off my tongue and put it on a tissue. It's the size of a split pea, mostly yellowish, but with fine streaks of black or dark brown. Then I feel more, almost all smaller than the first. Some look like single short hairs, an eighth of an inch long. Some are just pale little yellow chunks. I gather them on a couple of small tissues to show the doctor, but I know what it is.
Ever since I had the Black Tongue, the flora of my mouth has been out of whack. Brushing my teeth and rinsing with mouthwash after every meal helps. Brushing the tongue is very helpful, but I can't brush all the way to the back of my tongue due to the gag reflex, and that is where things grow — on my tongue — during the day. For some reason, the party dies down at night. At times during the day, I can feel a bumper crop of crap back there, but I can't get rid of it.
Now, waiting for the doctor, my tongue is shedding. It's disgusting. But good!
The fellow comes in. I proudly show him my harvest of whatever it is that's coming off my tongue. He appreciates the visuals and gives me permission to throw them out. He has preliminary blood test results for me. Mostly reasonable, especially the hemoglobin, so my prediction was wrong. My creatinine level is higher than desired, an indication that I am dehydrated and that my kidneys are having some trouble. He floats the idea that I might get a rehydration IV before leaving and/or receive one at home in the next few days. He leaves. More waiting, more shedding.
Around 4:30, my doctor comes in. She wants to know how often I'm peeing. I think every four hours is pretty normal, but it's not enough. She wants me drinking enough that I'm peeing every one to two hours. Also, no tea, not even herbal, which has been a staple of my days. Even herbal teas can dehydrate you. So, I have really had two drinking problems: not drinking enough, and some of what I'm drinking being the wrong stuff.
My doctor's solution to the dehydration problem — drink more of the right stuff — illustrates one of the things I like about her. She seems to be firmly in the "first, do no harm" camp of medicine, where other doctors seem to think first what medical intervention will help — what pill, what procedure. My doctor, though not averse to prescribing procedures and pills, respects the body's ability to heal itself, given a little help.
After my appointment, I have to get some blood redrawn, because the sample that provided the preliminary good news about blood counts turned out to have clotted, rendering its results invalid. This means I leave the clinic not knowing my blood counts or my Prograf levels.
Today (Tuesday), is a day of heavy drinking and frequent trips to the bathroom. I check in with my doctor at the end of the day, having not heard anything. As I assumed, no news is good news. The second blood draw yielded valid and solid blood counts. My Prograf level is a little higher than desired, which probably explains the elevated creatinine counts. She adjusts my dosage.
I'm headed back on Friday for a pulmonary function test and the first bone marrow biopsy since my transplant.
But right now, I have to go pee.