The Fighters Chronicles - The Salty Cysters Pt 1

MY STORY

My name is Lea, I am your typical 26 year old girl born and raise in Maryland. I live a very happy, active, and full life however what most people do not realize about me is that I fight cystic fibrosis at every single second of every single day. I was diagnosed with CF at the age of 3. Growing up with CF I went to school, played sports, and lived a very active and normal life. I never let CF stop me then and I don’t let it now. I went on to college where I graduated with biology and nursing degrees. I currently have a job that I love working as a nurse taking care of other people’s loved ones and I volunteer a good amount of my time with the Cystic Fibrosis Foundation as a CF ambassador sharing my CF story, a co-chair of Baltimore Great Strides, a Great Strides team leader for Team Leaf & recently I took on the role as the National Ambassador of Great Strides for 2017 across the United States. When I’m not found working or volunteering my time I can normally be found at the beach, traveling to new places as much as possible, or spending time with my friends and family.

My CF story got interesting in high school when I ended up developing hemoptysis (coughing up blood) to the degree that on a regular basis I would cough up a hand full to toilets full of blood every time I would lay on my back or right side. This went on for 7 years and I had more surgeries than I can count, however nothing seemed to do the trick. The only thing that gave me some relief was when I started a research medication my freshmen year of college to correct one of my CF mutations, however close to the time I graduated from college the study was abruptly ended and I was taken off this medication. Over that next year I drastically declined. My lung function dropped and the hemoptysis came back even worse than before. I went on to fight for the next year to get back to where I used to be but despite my efforts I was referred for a double lung transplant. 

The moment I was told I needed to be referred to transplant clinic was one of the most devastating days of my life, however I decided to be positive and give my lungs one final fight before accepting transplant as my only option. I did this by enrolling myself in physical therapy, getting back on the research medication I had been taken off of, and finding a surgeon determined to put an end to my hemoptysis. Thankfully my efforts were successful! I stabilized my lung function, my surgeon finally figured out what was causing my hemoptysis after all these years and I had an entire year almost completely hemoptysis free, & I was ultimately able to avoid a double lung transplant.  I am extremely thankful for my CF care team at Johns Hopkins Hospital, the CF research team at Boston Children’s Hospital, and my family and friends who have supported me along this journey because without them I would not be where I am today, but all that pain I experienced getting to this point has been a driving force behind starting Salty Cysters with Tiff. I never want anyone to feel the pain I did or be taken off a medication that is keeping them healthy and I want a cure for this disease so that others don’t have to go through even half of what I have. 

Salty Cysters - Pt 2 next week.