My "CF" Info

I have been reading so many amazing CF stories the last couple of days and lets be honest I have nothing but time right now so I thought I would tell you mine!

• My name is Jennifer

• I just turned 27 on Feb. 3rd

• I was diagnosed at 2 months old for failure to thrive

• When I was a baby my mom would mix my digestive enzymes in banana baby food before I could eat.....to this day I can't stand the sight or smell of a banana! Eventually, I just learned at a VERY young age how to swallow a pill.

• At around the age of 8 or 9 I started doing daily breathing treatments and my mom did my CPT.
  

• When I was in 3rd grade I had a make a wish. My wish was to meet Michael E. Knight who plays Tad Martin on "All My Children." It was a WONDERFUL experience and he is an amazing man who I kept in touch with for years after. (This kind of puts my love for soaps into perspective...it started at an early age!) :)

• My first hospitalization wasn't until I was in middle school. Other than that I had a completely "normal" childhood. Once I hit high school my hospital stays became once a year.

• Other than the occasional sinus headache/pressure I have never had any serious issues with my sinuses that require surgery or any maintenance on them (knock on wood)
  

• When I was younger not only did I take horseback riding lessons but I also took voice lessons for years and was an opening act for a dance troop performing at many places around FL.
  

• When I was 20, I had to have my appendix removed. Because the doctor was worried about putting me under I was awake for the whole thing and was given an epidural for the procedure. It was NOT fun.

• In 1999 I was told I should start thinking about tx. Back then the list was based on seniority not need and since my blood type is O negative, the idea was for me to go early and get on the list so by the time I would need it I would have moved up the list.

• In my early 20's I started going for my "tune-ups" about every 6 months. It was around this time I warmed up to the idea of a medi-port and when I was 21 I finally had one put in. Its not in the usual spot, mine is on my left side under wear my bra strap is. When I am not accessed you would never know its there....I wouldn't have it any other way!

• I have my AA in Accounting an have worked at a bank for 5 1/2 yrs. I plan on going back to school once I am healthy again! Oh yeah....I also went to school for phlebotomy before I went to school for accounting. I LOVED it but soon realized that if I wanted to work post-tx being around sick people wasn't necessarily a good idea.

• I was diagnosed with CFRD 2 years ago. When I am not in the hospital all I need is 1 shot of Lantus a day (a 24hr insulin.) When I am sick and in the hospital/on steroids I need novolog to cover my meals too.

• It was also 2 years ago when I started sleeping with oxygen at home.
  

• When I was 20 my mom lobbied to change the law in FL. Because of her hard work and determination Medicaid in FL now pays for adult double lung transplants. Before her they did every other organ BUT lungs....oh yeah and did I mention the law is named after me! :)

• I have 2 little brothers and a little sister. Nobody in my family (to our knowledge) has had CF but me.
  

• In June 2007 I married the BEST man in the world. It was an awesome day and it just keeps getting better. He always makes me laugh even when I am trying to be mad at him! :)

• With my health not getting any better and my FEV1 declining I was once again sent to Shands at the University of Florida. I re-did all my tx test to get a score and in May 2008 I was "activated" on the list. Since then I have been working from home and twice a week attend pulmonary rehab classes to get prepared for surgery.

There is SO much more but my brain is hurting just trying to remember all the dates/facts! I have had such a great life I could be here ALL night writing about it, but don't worry I won't. I have a wonderful support group of family and friends and can't wait till I can add to this list all my great tx milestones. Goodnight!!