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    The Fighters Chronicles

    The Fighters Chronicles - The Salty Cysters Pt 1

    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.

    The Fighters Chronicles - Jesse Ryan Martin

    The Fighters Chronicles - Jesse Ryan Martin

     

    MY STORY

    My name is Jesse Ryan Martin and I was diagnosed with cystic fibrosis at 8 months old.  My life was awesome when I was growing up, I was raised my amazing parents Jesse and Wanda Martin. Everything was great growing up, I don't remember ever having any issues with cf when I was a child.  Then at 7 years of age I was admitted into the hospital.  This was pretty traumatic experience for me due to the fact that they sent me home with the antibiotics and they did not check my levels.  My kidneys shut down and was on dialysis.  The doctors didn't think my kidneys would ever fully recover, but miraculously they where fully healed.  I contribute that to God and my praying family.  Nevertheless fast forward to age 21 and that was the only hospitalization I had ever had.  I remember going to an adult cf doctor for the first time ever at the age of 21, I was in such bad shape with my O2 levels at about 70% and my FEV1s at 40% and weighing 114lbs at 5'7.  Needless to say the doctor and I had a very serious conversation about my health, he said "If I did not change then I would not live to see 25".  This was a very eye opening experience for me.  I am now a certified personal trainer through ISSA, and I have dedicated my life to help all cf patients I can to reach their full potential health wise absolutely free. 

    For those who do not have cf I still help them and 10% of all proceeds that come in go straight to the CF Foundation. If you would like for me to help you please contact me! I also have a small but growing youtube channel to help everyone with their fitness goals with a special emphasis on CF patients!


    PLEASE FEEL FREE TO CONNECT WITH ME HERE:

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    Facebook

    Instagram

    The Fighters Chronicles - Ashley Mathis

    The Fighters Chronicles - Ashley Mathis


    MY STORY

    There I was, a 24 year old with a brand spanking new baby, I should have been overjoyed and ecstatic. I was already separated from my now ex husband so I was not only a new mom, but a new single mom. I got a call from my son's pediatrician saying he tested positive for cystic fibrosis on his newborn screening blood work. At this point Mikey was 13 days old. I knew prior to this call that something wasn't right, he didn't seem to be digesting milk properly and wasn't gaining any weight. I was familiar with cystic fibrosis from nursing school, so I was scared, really scared. I just hugged my baby and made the necessary appointments to figure out our next steps. Once all of his medications and treatments were thrown into our lives I thought, "thank goodness I'm a nurse". I was easily able to understand what I was doing and what medications I was giving him. I then realized I needed to change my negative thoughts into positive ones, and that God chose me to be the mom of a child with CF for a reason. He knew I could care for him and give him the most love he needs and deserves.


    "He's my hero." 


    When Mikey was a baby, I was afraid to let him do almost anything for fear of germs and illness. I wanted to put him in a bubble. When he was in the early walking stage I didn't even want him to go on playgrounds because I had no control over how clean/dirty they were. Mikey had his first round with pseudomonas aeruginosa at a year old. I have been able to take care of his illnesses at home with oral antibiotics and increased treatments and for that we have been very fortunate. Since that first bacteria scare, I learned that I can't control everything. He needs to be a child first before anything else. Bacteria is everywhere and no matter how much I want to control it I can't.  I now have the sweetest, happiest, most loving 3 year old boy any mom could ask for.. he just also happens to have CF. He loves race cars, trains, airplanes, and outer space (his vest is galaxy theme!) He goes to preschool, loves to play on his iPad, run outside on the playground, go swimming, play catch, shoot baskets, and play with his friends just like any other kid. He's not at the point yet where he knows he has an illness, but I hope he never loses his amazing spirit. He's my hero.

     

    FEEL FREE TO CONNECT WITH ME HERE.

    Personal Facebook

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    The Fighters Chronicles - Loriann Reynolds

    The Fighters Chronicles - Loriann Reynolds

     

    MY STORY

    In 1973 I was born as a twin.. We are two minutes apart. My twin brother does not have CF and I am okay with that, primarily because the doctors had told my parents that if he had been born with the disease instead of me, he would not have lived.
    My parents were also told to not get too close to me emotionally, because I would probably not live to see my 3rd Birthday... I just turned 43 1/2... Yes, the halves count!
    I grew up on Long Island, NY and probably have had as many hospitals stays as I've had birthdays.. Just to be safe, add a few more hospital stays onto the forty something number. I've had 13 surgeries, 3 Port A Caths, 2 oxygen machines, and a partridge in a pear tree.. Just wanted to see if you were still reading along....
    Three and a half years ago I moved to Las Vegas, Nevada in the hopes of drying out my lungs. I also was diagnosed with MAC/MAI. My fiancée and I were fans of the southwest, so we decided without much hesitation that we would give Sin City a shot.
    Although my fev1 is on the lower end, and I require o2 and a wheelchair when we go out, I have found my niche here in southern Nevada volunteering my time with fundraisers for the Nevada Chapter of the Cystic Fibrosis Foundation. I'm enjoying being a significant part of a cause that I know backward and forward. Whether I am speaking to parents of their newly diagnosed child and trying to ease their fears, or asking for and collecting donated items for our yearly events, or speaking about my life thus far to a room full of 500 or more people, I am committed to my Chapter to help bring about awareness to Cystic Fibrosis.
    On a daily basis, I'm eager to shed light on this disease for which so many of us live with and I will talk to anyone who might ask me out of the blue why I'm coughing or why am I wearing oxygen.... The more people who know about CF, the more people will fight with us to find a cure.
    My wish is for everyone to have a happy and healthy holiday season...
    Best,Lori

    PLEASE FEEL FREE TO CONNECT WITH ME HERE.

    Facebook

    CFF Nevada Chapter

     Email : Lreys15@yahoo.com

    The Fighters Chronicles - Taylor Vanover

    The Fighters Chronicles - Taylor Vanover

         

    MY STORY

    I'm 23 years old, from Black Mountain, NC. I was diagnosed with Cystic Fibrosis at the age of 11 months. After being rushed to the hospital from day care with a fever of 103, doctors started to run tests to figure out what was going on. I had a cousin named Misty who had Cystic Fibrosis; so my father asked the doctors to test me for CF. The doctors at first refused; and only wanted to test me for Leukemia and other cancers. Once those came back negative, the doctors finally decided to do a sweat test and it came back that I had Cystic Fibrosis. As soon as Misty, my cousin, found out about my diagnosis; she quickly got in contact with her pulmonologist in Chapel Hill; and we have been going there for CF care since 1994. Growing up, my family helped me to live as normal a life as possible even with Cystic Fibrosis. I was very active, from an early age with competitive fastpitch softball. Through that, we were able to travel all across the Southeast United States, and even one trip to Denver, Colorado. The doctors believe that the physicality of fastpitch softball is what kept me so healthy up until I was around 20. Once I hit her 20s, my health had started to decrease, which actually led to me being intubated and on a ventilator/life support for 8 days in November of 2015. Since that scary incident, my lungs were unable to recoup like they used to; and I was placed on the list for a double lung transplant on May 20, 2016. I received the call for new lungs on May 28, 2016 and I am now recovering and working hard towards breathing easy.

    PLEASE FEEL FREE TO CONNECT WITH ME HERE.