The Fighters Chronicles — Lea

OUR STORY

Lea & Tiff get asked a lot how they met, since they both have cf & obviously live on completely opposite sides of the United States. Their story began only two years ago, when Tiff was trying to check one more thing off her bucket list by meeting Taylor Swift. At the time Lea had no clue who Tiff was, however her Buzzfeed article went viral about meeting Taylor & all of Lea’s friends were sending it to Lea in complete awe of Tiff.

A few months went by & of course Lea was browsing instagram, like she normally does, when she came across Tiff’s account. Lea instantly added Tiff & Tiff added her back & thats when their friendship began with short messages of support & encouragement to one another. However, they didn’t become close until last winter. Tiff had uploaded her newest video on her youtube LUNGS4TIFF about the day she was referred for transplant. Lea cried her eyes out watching that video thankful that she had never been in that situation but fearful it could one day be her. Little did she know exactly 1 week later Lea would be put in Tiff’s shoes. Lea had her normal follow-up CF appointment. Honestly she was doing better than she had been over the past year, however Lea’s CF team decided transplant would be her best option in the future if they could not get her hemoptysis under control. Luckily at that appointment Lea’s mom was with her, however the news hit both of them hard & Lea was a total wreck. However, she would have been more of a wreck if she hadn’t seen Tiff’s video the week before almost prepping her for that moment.

Lea spent the next few weeks absolutely devastated, feeling completely alone bc no one could relate to her in her life, & unsure of what the future held, however she felt the need to reach out to Tiff & let her know that her video really impacted Lea. And to be honest from that day that Lea reached out to Tiff they became instant besties. CF may have been the driving force that brought Lea & Tiff together, however their friendship is so much more than just CF.  Tiff got Lea through one of the hardest times of her life when no one else could, they may live on opposite sides of the US but distance is no match for the love, support, & friendship they bring into each others lives. 

How Salty Cysters was born: 

In the Summer of 2016 Lea and Tiff were talking about how they could further help the CF community as well as raise CF awareness & funds for CF research. The thing about Lea and Tiff is that separately they’ve experienced a good amount of what CF can throw at you, but together they have literally been through almost every situation CF can put you through in life and together they handle it with even more positivity and strength than they do alone. So after a good amount of time throwing ideas and names back and forth Salty Cysters was born. They hope that over the next few months and even years down the road they can help to unite the CF community through different tools, help get us even closer to a cure by raising CF awareness through their stories and raise funds by selling their CF swag, and help others with chronic illnesses embrace all the obstacles that chronic disease can throw at you with a positive spirit. 

Part 1 Here

Part 2 Here

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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.