My CF Life
I was born with Cystic Fibrosis. It is this great genetic disease! Kidding, obviously. CF sucks. There is no cure. There are tons of medications and treatments to help 'better' a persons life with CF but no solution. I was diagnosed shortly after birth. I have an older brother who also has CF. So I was tested right away. About a month into my life I developed pneumonia. I became so incredibly sick I had to be "paralyzed" so I wouldn't expel any energy. All my energy had to be saved for breathing. The doctors told my parents I probably wasn't going to make and to prepare for the worst. Well my mother kept by my side, rubbing my hand for hours at a time and I began to improve. I was finally well enough to go home. As I was being discharged from the hospital the doctors told my parents my CF was going to be very different than my brothers. They should expect to bring me to the hospital many times. PROVED THEM WRONG!! I didn't have to be hospitalized for a CF exacerbation until I was 19 years old. It is something I am rather proud of.
Sadly, since 19 I have had many trips to the hospital. In 7 years I have been hospitalized 20+ times. I have had 12 PICC Lines. I finally had a medi port placed to ease the amount of invasive poking. Each trip is about 2 weeks. I had one extend stay with extreme complications. In September of 2009 I was admitted for an exacerbation. While I was in this time, it was decided that a Port should be placed. It was also decided a feeding tube needed to be place due to poor weight gain. The Port was placed first and antibiotics were started. A week later the feeding tube was placed. Now it gets a little fuzzy for me at this point. Because of the back to back procedures that involved anesthesia, which my lungs didn't react well too, I ended up getting pneumonia. This was bad. Very, very bad. Within days of the FT placement I had to be intubated and sent to the ICU. I spent the next month on a ventilator fighting for my life. I have no memory of October 2009 at all. I am forever missing that month of my life. My mother sat by my side, as she did when I was an infant just rubbing my hand. Once again the doctors told my parents that it was very slim that I would be ok from this. My parents refuse to give in. (Can't thank them enough for that). It was decided after about a month on ventilation that I was well enough to try breathing on my own. If I couldn't a Trach Tube was going to be placed (YIKES!). Thankfully I was able to breathe on my own, with the help of oxygen of course. After a week of ICU and breathing on my own I got moved to the CF floor. I had to relearn to walk, swallow, hold my bladder. Many things that I definitely took for granted before this whole ordeal. It was very stressful but I did it. After another week I was able to go home. It was the scariest and longest stay I have ever had. I hope to NEVER do that again.
After those shenanigans it was decided that I would be listed for a double lung transplant. I started the process in November 2009, right after I got out of the hospital. I went through months of tests. You have to go through testing to make sure you body, although incredibly sick, needs to be able to survive a major surgery, like transplant. Many of the tests were painless and more of a pain in the butt. Some involved painful poking and prodding of my body. Finally on May 20, 2010 I was placed on a waiting list for a double lung transplant. After almost 2 years, I decided to get dual listed. And on January 17, 2012 I was placed on a 2nd list to help increase my chances of getting that call.
Well, After waiting 2 years, 2 months, and 2 days I got that magical call on July 22, 2012. Life has been GREAT! I spent a few days in the ICU. But quickly had my vent removed and started breathing on my own. The next day I had 2 of my 4 drain tubes pulled out. by day 3 I was then moved to the lung transplant floor and up walking around. I stayed in the hospital for a total of 11 days! I still had to stay in Cleveland for 2 months, but I wasn't stuck in a hospital. I've had a great recovery! I'm still working getting back to my complete normal self, - even 3 years later, but I have made great strides!!
Woke up to this mess on my arms.
First solo walk!
After my 1st Bronch. Still groggy
Workin' it out at Pulmonary Rehab
For more information about Cystic Fibrosis visit http://www.cff.org/
For more information about Organ Donation visit www.donatelife.org
The Rest of My Life
Aside from my CF I have a pretty normal life. I have 2 brothers, one older and one younger. I have 2 incredible parents. I have lived in the same state my entire life and love it. I have always been a good student. I went to college in Vermont for 2 years and then transferred to a school closer to home and my doctors and finished up my degree there. I graduated with a BA in Child Development. I have always loved working with children and originally wanted to be a teacher. But since being transplanted that dream has put on hold - there are just too many germs. Now I work for my older brother, not sure where I going in the future yet, but I'm not really worried.
One of the best things that has happened to me is meeting my husband. Relationships are hard enough, when you add a chronic fatal illness to the mix it just makes things that much harder. I never thought, I mean i hoped and dreamed, but never really thought I'd meet a guy who can care and not care all at the same time. He cares for ME, he doesn't care that I have CF. I met Brian online. We talked for about a month before we decided to meet in person. Our first date was dinner at my brothers pizza place (he owns it) and a movie. It was such a fun night, it was so easy. I knew by our 3rd date that I was in love with this guy. He let me give him sugar while we were playing pool, and best part, he gave it right back. There was just such a calm, easy flow of events, everytime we hung out. On June 15, 2014 I was returning home from vacation in Aruba with my Mother and Grandmother. Brian met us at the airport to pick us up. When I got off the plane the was standing in the lobby with a sign with my name on it. I thought it was cute, you know, like the limo drivers hold up when they are picking someone up. Well he opened up the sign with my name on it and it sai "Will you marry me?" I was floored. I thought he was joking, I couldn't believe it. I of course said yes! So the next year and few months we planned our dream wedding. And on August 22, 2015 we celebrated our marriage in front of all our family and friends. We couldn't be happier. Now we are on to our next phase of life, hopefully, making a family.
Niagara Falls, NY
Our Wedding Night
Another passion of mine has always been animals. I'm a huge animal lover, in particularly dogs. I had 5 dogs in my house at one point! Now I have 3 dog babies of my own (picture coming soon). They are the best thing on the planet. You can't have a bad day with them around. Forever loved. Another dream of mine is to have my own doggy daycare and kennel. In May 2011, I enrolled in a program to become a Certified Dog Trainer. I finished in June 2012! Maybe one day my life will slow down enough for me to start my own business but for now I'm very happy.
Interested in knowing anything else, Just Ask!!