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    The Fighters Chronicles — cystic fibrosis

    The Fighters Chronicles - Nicole Turple

    The Fighters Chronicles - Nicole Turple

    MY STORY

    My name is Nicole, I'm 26 years old, and I am a Cystic Fibrosis warrior. Diagnosed at age 4 my parents had no idea what Cystic Fibrosis was. All they knew was what the doctors told them,  "Her lungs are bad, she's terminal, and she likely won't  live to see her teenage years." Many people can't remember things that happen when they're that young. But I do. 

    I remember being told they found out why I cough so much and why I always get belly aches. I remember being told I had to start taking pills, and lots of them. I remember being told I had to stay in the hospital for a sleepover, but I wasn't allowed to come home until I learned how to swallow pills. I remember the needles. So many needles. Blood work and IV's, beeping machines and oxygen masks. I remember being alone. Alone with nurses and doctors who became like family. And I remember being scared. Being so young and being told that you're never going to get better? That's scary, and it wasn't something that anyone sugar coated. That's what made me who I am today. 

    At age 16 I was also diagnosed with Diabetes. My pancreas just really doesn't like me! My other illness you ask? On top of CF, and being diabetic, I suffer from anxiety, depression, and severe malabsorption syndrome, all for which I take medications/needles for. Around 100 pills a day actually, and about 5-7 needles. I've also had over 150 hospital admissions, 4 sinus surgeries to remove nasal polyps that continue to grow inside my nasal cavity, a broncoscopy to suck mucus out of my lungs and get a good culture, tonsils removed, tubes in my ears. I've had several feeding tubes to keep weight up while I'm sick, as well as NG tubes that go from my nose to my stomach which gets pumped with medicine to help my digestive system when it just doesn't want to cooperate; and my most favorite surgery - my port a cath insertion! Having a catheter in my chest is my SAVIOR. No more collapsing veins while trying to get an IV for my long-term antibiotics. It's there, it's permanent and it's easy as heck to use. In fact, I've taught nurses how to access it while in hospital, and I also do my own flushes every month to make sure the line is clear from blood clots. 

    CF makes you smart, you know. A lot of my family and friends often treat me as if I'm a nurse. Always naming off symptoms, and asking my opinions. Because they know 'Nicole has been through it all!' 

    I would love to become a nurse and help others but I wouldn't want to risk my health or anyone else's so I chose a different path in life. I didn't graduate with my friends on time as I was sick and living on my own trying to keep a full-time job to pay bills. But I went back and graduated from the Nova Scotia Community College with my High School diploma. A couple years later I made the choice to enroll in college. "What's the point," they said. "What if you get too sick and can't finish?" they said. My response: "But I can." And I did! I enrolled in the Culinary Arts program at NSCC and I graduated with honors, and second highest in my class. I competed in a Culinary black box competition and brought home a silver medal. And I walked across that stage, received my diploma, and proved all the doubters wrong. I moved forward with my culinary career for a couple of years but then it got hard. Hot kitchens, long hours, etc. So I decided to switch my path of life and find a job that wouldn't be so hard on my health. I then became an income tax preparer and office administrator, which i have been doing since. Just because I get sick often and have a disability does not stop me from working. I just had to change what I was doing to make sure my health wasn't being jeopardized. 

    My boyfriend, our pitbull furbaby Lexi, my close friends and family members are my everything. They watch me get sick, come to doctors appointments, and comfort me when I'm having one of those "I JUST DONT WANT TO DO THIS ANYMORE" days. My friends are like my family. Especially my Cysters and Fibros. Those are people that get you, because they're going through it too. The hard part? Getting close to people with the same terminal illness as you. Forming bonds and friendships. Then they get sick. And they don't get better. Sometimes they die. I've had to attend far too many funerals of close friends who's battle was over. And that makes me fight harder. I fight for Megan, I fight for the Coffill twins, I fight for Amanda, Alex, and for Bryan. I fight for all who were not able. I am determined to grow and be alive when they make the announcement that CF stands for Cure Found. I will become a wife, a mother, a grandmother. 

    My name is Nicole, and I have Cystic Fibrosis, but I will NOT let it have me.

    The Fighters Chronicles - Juliann Yungkans

    The Fighters Chronicles -  Juliann Yungkans

    Sixty Five Apparel - Cystic Fibrosis Apparel -  Juliann Yungkans

    MY STORY

    I've been living with Cystic Fibrosis for almost 26 years now. I was diagnosed when I was only 3 months old and have been dealing with the daily struggles CF brings to my life ever since. My younger sister is battling along side me as she also has CF. Along with CF I also have Asthma, chronic sinusitis and CF related Diabetes. My life is far from normal but I like to think more normal than a lot of CF'ers get to have. I have my daily treatment regimes and take pills with every meal as well as insulin through a pump, however I live my life to the fullest that I possibly can. I've had my fair share of struggles with CF from multiple sinus surgeries, countless hospital stays and even spending holidays in the hospital.
    Juliann Yungkans
    However, I strive to do the most with my life like graduate with my Bachelors in just four years, despite the hospital stays and struggles I've had during my time at college. I am currently enrolled in the MBA program at ASU in their Professional program that allows me to work full time and go to school. I never want CF to limit what I'm able to do in life, although my health has always been top priority to me. I wouldn't be where I'm at today without the support and love of all my friends and family who are always there when times are tough! 

    Connect with me here. Facebook

    The Fighters Chronicles - A Story of Two

    The Fighters Chronicles - A Story of Two

    OUR STORY

    My name is Kate Murray and on new years of 2016, I remember posting a picture of my significant other, Roger, and I and the caption being "I can't wait to see what 2016 brings us" well 6 days later I find out we are  going to have another baby!
    Our first ultra sound came about and I will never forget googling what a 9 week ultrasound looked like while Google suggested I looked at twin ultrasounds and of course I did. Then when it came time for this first appointment there it was on the screen. TWO sacks which means TWO BABIES. That's right we were having twins and they both were healthy.
    As weeks passed and the babies were growing everything was going perfect! I had two healthy baby GIRLS. 35 weeks seemed to take forever but that's when contractions started and to the hospital we went. I had gotten the round of steroids needed for the babies lungs. I felt great, contractions stopped and I got some sleep. Roger and I went home and enjoyed the rest of our evening. The next morning approach and I was awoken by the breaking of my water leading Roger and I on a hour long ambulance ride down to our specialist. Arriving at the hospital I remember being wheeled into our pre-op room and not feeling nervous at all about anything. Roger on the other hand was just his normal quiet worried self. It felt like forever waiting to get into the operating room. When we finally started the process at 1:19 baby A was born and at 1:21 baby B was born and they both came out screaming. I knew their lungs worked and it was a giant relief. I made Roger go with the girls while they finished up on me.
    After recovery I finally got to hold my beautiful healthy babies and show big sister her new baby sisters and mama and papa their newest grand daughters. I remember how perfect and little they were! As Roger and I got settled into out room of course we couldn't sleep so at 3 in the morning we went down to see our newest additions and got to feed our babies their first bottles. Everything was perfect until baby A [Brenley Lynn] spit hers back up and hadn't passed the first black poop (maconium) like normal. While baby B [Brixten Jane] continued to eat normally. As days passed and our baby Brenley went through lots of x-rays and enigmas still nothing and she started to look very pail and sick and things just kept getting worse. While blowing veins and IVs not lasting they had to put in a PICC line to continue her IV nutrition and keep her hydrated. Mean while Brixten was uping her feeds and growing slowly but surely.
    Then the dread day I was not looking forward to..discharge. Discharge without my babies, not how I pictured this perfect birth was going to go. After getting settled and unpacked at home I couldn't wait to get back to our babies and bring big sister. While running to the NICU to see our babies the look on the face of our daughters Dr said it all. When he started to talk and the "we think transfer your baby [Brenley] to children's will be best and they will decide is surgery is necessary" my heart shattered. I remember every emotion coming over me. I was numb, angry, & confused. They were going to separate my babies. If the NICU world wasn't hard enough this was just a big punch in the stomach. Little did I know it was only the beginning & plenty more to come. Everything was such a blur after kissing my baby and loading her up to be transferred. All I felt was numb. Roger was doing 100 mph I swear on the way to Children's. We got there and of course we beat the ambulance, I remember sitting there waiting and I got a phone call from the doctors. She tells me that our baby needs surgery. SURGERY! She was only 5 days old! So we met with the surgeon and they took her back!
    That's when they started talking about CYSTIC FIBROSIS. We have never even heard of it and in order to find out if that's what she has we had to wait days for the newborn screen to come back. So a few days down the line one of the doctors had came in and Roger asks "have we gotton the results" the look at her face said it all. "Yes, BOTH of the girls have CYSTIC FIBROSIS." 

    The Fighters Chronicles - The Salty Cysters Pt 3

    The Fighters Chronicles - The Salty Cysters Pt 3

    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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    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.