So since May is CF awareness month, I thought I'd do a series of random posts about CF, how it affects my life, etc., as well as debunking any myths that need, well, debunked.
First, a quicky summary for those of you who may be joining us late. I was diagnosed late, for CF standards, when I was diagnosed at the age of 11. Until then I had had no real pulmonary symptoms. I had a constantly runny nose, which was misdiagnosed multiple times, as well as an inability to gain weight. At the start of sixth grade, I weight 58 pounds. Now Ohio, like many other states, includes CF in the mandatory newborn tests that all babies undergo, so I would've begun treatment much faster.
CF affects most of the body, but primarily the pulmonary and digestive systems. Once I started enzyme therapy, I gained weight fairly well (until the ever-present infections showed up), and had a relatively mild case until I was in high school/ college. After being in the ICU for two weeks during my sophomore year (Oct. 2001), my lung function rapidly started to go downhill, and transplant was mentioned. I was listed in May 2005, after finishing my college education at Capital University in May of 2004. Due to a ridiculous amount of Irish and German stubbornness, I graduated with the rest of my class, with majors in Political Science and English Literature.
I was on the list for a little over a month when I received the call for transplant on July 10, 2005. I was the first double lung transplantee at Children's, so I am forever inscribed in their History Books. :) There were many ups and downs, and you can dig around in the archives for that.
Some things about CF that are important to know:
--It DOES NOT affect your mental capacity
--Women with CF can get pregnant. Men are usually sterile.
--Some CF patients develop diabetes, some don't. CF-related diabetes is different than regular diabetes. I developed it post-transplant, which can happen due to the steroids and anti-rejection drugs. I think we've got a pretty good handle on it, though.
--People with CF often look perfectly normal from the outside. Do not assume that they're "fine" if you see them emerge from a handicapped parking space!!! (This is a huge pet peeve of mine)
--The gamut of CF is far and wide. Some people have very mild cases. Others receive transplants while in their teens. Some have feeding tubes, others are on supplemental oxygen constantly. Some people are in and out of the hospital and some are hardly ever there.
--For some reason, the joints can be affected in CF. I had lots of joint pain from my sophomore year of high school until after my transplant. However, when it's cold I still get joint pain. The steroids help a lot here. That's another reason the handicapped placard is my friend.
--Life expectancy, as ever, is an AVERAGE. Some kids die when they're 17, and some are joining AARP. If you know someone w/ CF, DO NOT automatically think you're going to outlive them. It may not be the case.