Wednesday, May 1, 2013

CF Awareness Month Blog #1

I was diagnosed at birth with Cystic Fibrosis on July 5, 1988. I did not pass my meconium (the black tar-like poop that newborns pass soon after birth), it was actually just stuck up there. When only a few hours old, the doctors told my parents that I needed to go into surgery to fix the blockage....And, I had to be transferred to another hospital in the area to perform the surgery. So my mom was still at the hospital while I was born recovering from giving birth, while I was being taken to a different hospital to have surgery -- I couldn't imagine how much of a wreck she was!
This is the best picture I have of my scars from
my surgery. I have three. Two tiny ones, and then
a weird shaped larger one right above my belly
button. (Don't mind the weird face, I was
cracking up about the height difference between
one of my friends and I!)
The surgery is called a meconium ileus surgery where they needed to go into my intestines and remove the blockage. I don't have too many details about the surgery itself, but as far as I know, it went according to plan. After the surgery, I did have to stay in the NICU (baby intensive care) until I was my birth weight again. From the surgery, I lost about one pound, so they told my parents I was not allowed to go home until very thankful for that!
I gained that pound back. It took me a month (so as you can tell, I've literally been struggling to gain weight my entire life!). Thankfully, after my parents took me home that August day, I have not been hospitalized since, which is a little rare for someone my age with CF and I am
Having the meconuim blockage is a tell-tale sign of a newborn having Cystic Fibrosis. I'm not sure if they performed a sweat test on me after that, probably, but my parents knew right away that I had CF. They had no idea what it was, and I'm sure they were terrified, because in the 80s the prognosis for CF was not very good! But luckily, I've stayed very healthy throughout my childhood, and now I'm doing a much better job of taking care of myself and keeping myself out of the hospital for as long as I can!

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