there was me. :) OK, ha ha. But in the words of The Sound of Music , let's start at the very beginning...
I was diagnoed with cystic fibrosis (CF), at the age of 11. Yes, this was a late diagnosis, and it wasn't even lung issues that brought it out, it was digestive. I was 4'6" (maybe), and I weighed 58 pounds. Even though small girls ran in our family, this was a bit too small. I had a constant runny nose, and had become totally lethargic, which was rare for the Energizer bunny of our family. I spent the entire summer before sixth grade curled up by the local pool while my brother and sister splashed in the pool, and I wondered where I didn't feel at all like moving.
My diagnosis was confirmed by a sweat test at Columbus Children's Hospital, which was a familiar place for me, since I had spent a lot of time there when I had seizures as a kid. So they already had charts on me. The sweat test is what determines CF, since kids with CF have a very high sodium chloride level in their body. The excess salt causes the mucus in the body to become too thick, clogging the tiny linings in the lungs and pancreas. Since it's thick, it's hard for the body to clear, and the mucus is trapped here, leading to infection and scarring, which causes loss of lung capacity and, eventually, that's it. The thick mucus in the pancreas leads to the clogging of the ducts that release enzymes which aid in the digestion of food, and some CF patients become diabetics due to loss of pancreatic function (that, thank God, has not happened yet to me).
After the sweat test came back positive, I made my virgin trip to Children's CF clinic, which is, thankfully, one of the best in the coutnry. I had my first go with PFTs--that's Pulmonary Function Tests. Basically, you are handed a long, thick tube with a mouthpiece on the end, and a pair of nose clips (that's so you're only breathing through your mouth and not cheating). You breathe normally for a few breaths, and then when you're ready you take a deeeep breath and "push, push, push" it out (as the Respiratory Therapists--RTs) say, until you're empty. Three of these make a complete set, and the best one is the one that's taken. There are other tests that can be done, like going into "the box" for another look at your lung function. Complete PFTs usually consist of FEV1s (the first test), the "box", and another test where you breathe normally, push out all the air in your lungs and don't inhale for 10 seconds. Kathy was the RT that day, and she became a great friend of the family--she's sooo funny.
After PFTs I met with Teri (another GREAT nurse) who took my medical history, and then I met with "God", also know as Dr. Karen McCoy, who gave me the first examination of our relationship. :) Dr. McCoy is a petite woman with dark brown hair and gold-brown eyes, and a brain the size of Montana. She's also one of the best doctors I have ever seen (she's one of the top 125 docs in America, actually), as will be demonstrated as I tell the story. :)
D.r McCoy, after examining me, explained that I would have to be admitted for a "clean out," which is pretty common in the CF world. "When do you want to come in?" she asked.
"Today, I guess," I said. I was a pragmatic kid, and I wanted to get started as soon as possible. It was early morning, so Dr. McCoy said she'd have the papers ready by early this evening, around 4 or 5.
Dad and I went home to pack...well, OK, they packed, and I just sort of sat there, not quite sure what was going on. I wasn't upset, really, since I'd spent time in Children's before and was familiar with blood draws and the ways of hospital. My mom helped out termendously by ordering me a Felicity doll from the American Girl catalogue (I love those dolls...still do). My grandparents were already there, so Dad, Grandma and Mom (I think) went with me to the hospital, where I began my two-week stay on 5 Tower, where my room had a lovely view of a brick wall, but also a VCR, thanks to my Uncle Dave (my mom's sister's husband), who knew some of the higher-ups at Children's and could make things happen, like a VCR. :-D High tech in those days, let me tell you.
The first day began with an IV being placed by Jenny, who would be my favorite nurse during that hospitalization. Let me tell you, that IV hurt like crazy, and I'm not sure why, because it really shouldn't--it's just a tube, the needle is removed. But it hurt so bad, I still remember the burning sensation today. My grandma came into the procedure room with me, and I cried, big, silent crocodile tears, as Jenny tried to get the IV in, and succeeded on the second try. Issues with IVs were to become a common theme.
So I began my first stay in the hospital for a CF clean out, and we began to learn more than I thought possible...
that's enough for now...I'll post more later!
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