I was diagnosed with cystic fibrosis (CF) when I was 11 years old, which is somewhat late for a CF diagnosis. CF is an genetic disease which affects the respiratory and digestive systems.
CF is an autosomal recessive trait; that means that both my parents had to be carriers of the recessive gene. And even then, they had a 25% chance of having a child with CF. So...I have CF, my brother and sister do not. They may be carriers. A lot of people are carriers and don't know. Since I have a large extended family, and my diagnosis was late, my cousins all had sweat tests done. Today, CF testing at birth is mandated by most states.
I was listed for a double lung transplant in May of 2005. I began the testing in the Fall of 2003 at the Cleveland Clinic (during my senior year in college). At the time, my CF center at Children's Hospital was working to create their own transplant center. In the Fall of 2004, that was realized, and I was one of their first patients. I had another workup done in March of 2005, during a period of hospitalization. The center was accredited and I was listed.
June of 2005 was spent mostly in the hospital. I was sleeping most of the day, and the simplest things, like washing my hair and brushing my teeth, took tremendous effort. Upon discharge, I was on supplemental oxygen at night.
On Sunday, July 10, 2005, I received the call that lungs were available in Minnesota, from a 50 year old woman. Around 1 a.m. on July 11, my family and I drove to Children's ER, where the registration process began. I was on the CF/Pulmonary floor (4AE) for the last time that night.
The surgery took 12 hours (A new record), and I was in the CICU for a few days, then down to the new transplant floor, 6T (now 5C). I was in the hospital for a month, undergoing med changes, rehab, and evaluation for the burn I received on my right arm during surgery. Finally, I was discharged in early August.
Since then I have had no episodes of rejection, and my PFTs are around 60%, compared to 20% (or thereabouts) before transplant. When I was discharged after surgery, I weighed 83 lbs. (Let's just say--I weigh more now.)
In 2006, I was interviewed as part of the Children's Fundraising Drive. Here's the video (with clips from docs and surgery.)
This one was for a TV spot that runs on our local CBS affiliate:
I've also become a volunteer for Lifeline of Ohio, which promotes organ and tissue donation throughout the mid and north central parts of Ohio.
My five year anniversary (an important clinical--and personal!--milestone) will be celebrated July 11, 2010.
Here are some of the news stories:
Medical News Today (about my discharge)
Nationwide Children's Newsroom