I did my breathing treatments, took enzymes and vitamins and the occasional round of oral antibiotics. I had doctors appointments every few months. But between the fact that I was still very much a child and naive about my illness, my "doctor Mom" doing everything she could to keep me healthy and what I can only choke up to being "lucky," I hadn't yet experienced the harsh reality that many with cystic fibrosis face. Honestly, as a child, I barely remember even having CF. When I walked into the Pediatric Ward that Monday, I had no idea I was about to hit a breaking point. That Monday was a catalyst in my healthcare journey because for the first time in my life, I began to understand what cystic fibrosis really was. In some ways, I actually consider it to be my "first" admission because the illness I knew before was nothing compared to what I've known since.
I spent 23 days in the hospital that April. During which, I was diagnosed with CF related diabetes and a mycobacterium abscesses lung infection. I was started on insulin therapy and learned to give myself a shot with every meal. I also had a central line permanently placed in my chest, which I used for IV antibiotics, 3-4 times a day, every day, for the next 3.5 years. In a matter of days, everything I knew about my life changed.
I went from being your average sophomore in high school, to practically earning my nursing degree. I learned how to do dressing changes and run antibiotics at 5am like there was nothing to it. I had to reschedule my entire life to fit my new medical regimen. I ended up being held back a year in school because I just didn't have the physical or emotional energy to keep up. Thankfully, my mom in anticipation that I would eventually get sick, had encouraged me to push ahead in school when I was younger, so I ended up just graduating on time rather than a year early. I was overwhelmed and frustrated. I didn't understand. I think, prior to that admission, I had this idea in my head that I wouldn't get sick until I was "older" and I wasn't even old enough to drive a car, so how was I old enough to be this sick? At one point, I had a doctor telling me I might need a lung transplant before I even graduated high school.
Since that admission, I've been hospitalized 23 more times and had nine surgeries. I've had literally countless peripheral IVs, over a dozen picc lines (and who knows how many attempted ones), another central line and a mediport. I've had three insulin pumps, four if you count the one currently sitting in my pocket. I've changed out the continuous glucose monitor sensor attached to my thigh about 75 times. My lung function has declined from over 80% to just 35%, on a good day. I've gone through four pulmonologists and at least three complete ward rotations of inpatient residents, nurses and corpsmen and dozens of consults with different specialties outside of my respiratory care. I've had four drug reactions and eight blood transfusions. I've been prescribed "tanning" to as an exploratory treatment for chronic vitamin deficiencies and received brand new FDA approved therapies within weeks of them coming on the market. I managed to eradicated my mycobacterium infection, one that I was told would never go away and would require antibiotics for the rest of my life to manage. I've had the flu at least five times, including the swine flu in 2009, as well as pneumonia three times and MRSA twice. I've dealt with multiple secondary conditions or complications including depression, anxiety, DIOS and gastroparesis. I've had panic attacks so severe I ended up in the Emergency Room and once was in the beginning phases of cardiac arrest. I've had probably close to 300 doctors appointments and spent equally as many hours on the phone with doctor's offices, medical suppliers, pharmacies and insurance companies. And speaking of insurance, by my last count, I was approaching 2.8 million dollars worth of healthcare, but that was before I started taking Orkambi which costs nearly $800 a day, so... oh and at my last clinic appointment, my nursing coordinator informed me I had just started volume #5 of the 3-inch thick folders they use for medical records.
In ten years, I've taken (approximately) 73,000 pills, 109,500 enzymes, well over 200,000 units of insulin and 16,500 cans of formula through my feeding tube. I've done 29,000 breathing treatments, 32,000 inhalers and 3,600 hours of airway clearance. And spent 3,000 hours hooked up to IV antibiotics and 2,500 hours hooked up to supplemental oxygen while sleeping... give or take a few thousand.
Ten years ago, I was admitted to the hospital and my life as I knew it was torn apart. I didn't have the slightest clue what trials were ahead of me. I had no idea what it was like to be chronically ill. There have been so many days in last decade that I've wanted to give up completely. I've wanted to raise my white flag and let cystic fibrosis win.
I spent 23 days in the hospital that April. During which, I was diagnosed with CF related diabetes and a mycobacterium abscesses lung infection. I was started on insulin therapy and learned to give myself a shot with every meal. I also had a central line permanently placed in my chest, which I used for IV antibiotics, 3-4 times a day, every day, for the next 3.5 years. In a matter of days, everything I knew about my life changed.
I went from being your average sophomore in high school, to practically earning my nursing degree. I learned how to do dressing changes and run antibiotics at 5am like there was nothing to it. I had to reschedule my entire life to fit my new medical regimen. I ended up being held back a year in school because I just didn't have the physical or emotional energy to keep up. Thankfully, my mom in anticipation that I would eventually get sick, had encouraged me to push ahead in school when I was younger, so I ended up just graduating on time rather than a year early. I was overwhelmed and frustrated. I didn't understand. I think, prior to that admission, I had this idea in my head that I wouldn't get sick until I was "older" and I wasn't even old enough to drive a car, so how was I old enough to be this sick? At one point, I had a doctor telling me I might need a lung transplant before I even graduated high school.
Since that admission, I've been hospitalized 23 more times and had nine surgeries. I've had literally countless peripheral IVs, over a dozen picc lines (and who knows how many attempted ones), another central line and a mediport. I've had three insulin pumps, four if you count the one currently sitting in my pocket. I've changed out the continuous glucose monitor sensor attached to my thigh about 75 times. My lung function has declined from over 80% to just 35%, on a good day. I've gone through four pulmonologists and at least three complete ward rotations of inpatient residents, nurses and corpsmen and dozens of consults with different specialties outside of my respiratory care. I've had four drug reactions and eight blood transfusions. I've been prescribed "tanning" to as an exploratory treatment for chronic vitamin deficiencies and received brand new FDA approved therapies within weeks of them coming on the market. I managed to eradicated my mycobacterium infection, one that I was told would never go away and would require antibiotics for the rest of my life to manage. I've had the flu at least five times, including the swine flu in 2009, as well as pneumonia three times and MRSA twice. I've dealt with multiple secondary conditions or complications including depression, anxiety, DIOS and gastroparesis. I've had panic attacks so severe I ended up in the Emergency Room and once was in the beginning phases of cardiac arrest. I've had probably close to 300 doctors appointments and spent equally as many hours on the phone with doctor's offices, medical suppliers, pharmacies and insurance companies. And speaking of insurance, by my last count, I was approaching 2.8 million dollars worth of healthcare, but that was before I started taking Orkambi which costs nearly $800 a day, so... oh and at my last clinic appointment, my nursing coordinator informed me I had just started volume #5 of the 3-inch thick folders they use for medical records.
In ten years, I've taken (approximately) 73,000 pills, 109,500 enzymes, well over 200,000 units of insulin and 16,500 cans of formula through my feeding tube. I've done 29,000 breathing treatments, 32,000 inhalers and 3,600 hours of airway clearance. And spent 3,000 hours hooked up to IV antibiotics and 2,500 hours hooked up to supplemental oxygen while sleeping... give or take a few thousand.
Ten years ago, I was admitted to the hospital and my life as I knew it was torn apart. I didn't have the slightest clue what trials were ahead of me. I had no idea what it was like to be chronically ill. There have been so many days in last decade that I've wanted to give up completely. I've wanted to raise my white flag and let cystic fibrosis win.
I've cried more than I ever thought I could. I've cried so hard that I hyperventilated and cried until I puked. Cried to a point of complete and utter exhaustion, until I honestly couldn't cry anymore. I've screamed and slammed doors. Cursed at myself, my family, my friends, my doctors and my God. I've refused medications and skipped treatments. I've gone days without eating. Or had days where I only managed to get out of bed for an hour or two. I've tried over and over to understand why this was all happening, why I had to be sick. I've been at a loss for words trying to explain to family and friends what it all meant. I've wondered if I would live long enough to see my siblings grow up. I've gone through break ups because of my health and had to hear from people that I loved with all my heart, that they couldn't handle my disease or the idea of me dying. I've had conversations with my mom over end of life care. I've tried to rationalize my thoughts and my feelings to dozens of mental health providers. I've spent hours in my car driving aimlessly because I just didn't know what else to do. I've felt so out of control of my own life that I questioned my own sanity. I've experienced physical and emotional pain so deep that I wouldn't wish it on the devil himself. I've found myself in the darkest of places, where I desperately begged for God to just let it end, where I was convinced I just couldn't do this anymore. I couldn't handle being sick for even one more day.
In ten years, I've seen, felt and experienced cystic fibrosis in the worst of ways. I've also seen, felt and experienced more beauty, compassionate, kindness and hope that I ever thought possible.
In ten years, I've seen, felt and experienced cystic fibrosis in the worst of ways. I've also seen, felt and experienced more beauty, compassionate, kindness and hope that I ever thought possible.
Since that April, I've taken a lot of medications and spent way too many damn days in the hospital, but I've also lived a life so full of love and success that I often wonder what I did to deserve it. To name a few... I was selected for a travel level soccer club and spent four years playing varsity soccer and volleyball. I started college classes at 16 years old. I graduated high school. And college, twice. All with honors and without needing a lung transplant. In college, I was recognized as the Outstanding Senior of the Year for my major of 400 students and was a finalist for the most prestigious leadership and service award my university offered. I've held four internship. I started a career that I love. I was selected as a Volunteer of the Year by three different non-profit organizations. I fell in love. I learned how to surf from pro surfers. I've traveled to four countries and over 20 states. I received a national service award from the White House. I've seen three of my siblings get married and been a part of all of their weddings. I've watched my two little brothers grow up into young men that I am beyond proud to know and love. I stood by my best friend of ten years side while she married the love of her life. I've learned that my mom is truly one of a kind and been blessed to have her not only as my mom, but as one of my very closest friends. I've had hundreds, if not thousands, of friends, acquaintances and even strangers send me get well wishes, cards, flowers, snacks, games, balloons, and more during my hospital stays... I've experienced so many moment of pure joy, where being "sick" was the absolute last thing on my mind.
And that's just the "normal" stuff. I've also had opportunities as a direct result of my cystic fibrosis. Opportunities like serving as a state ambassador for the Virginia Chapter of the Cystic Fibrosis Foundation for two years in a row. Or attending dozens of fundraising events for CF, raging from black tie galas to 5k walks. I've met hundreds of volunteers and donors committed to finding a cure for CF. I've been on TV, in the newspaper and on the radio. I won a "national selfie contest" when a friend submitted a photo I took during one of my hospital stays. I've been selected for scholarships and received top of line athletic wear from CF-related non-profits like the Boomer Esiason Foundation and Rock CF Foundation. I served on an national Adult Advisory Council for CFF. I've made some of my best and closest friends through our CF connection. I've spoken about my life with cystic fibrosis to crowds raging from 10 to over 500 people. I hiked a half marathon with 35% lung function to raise awareness and funds for much needed research. I've received over $10,000 in donations to the CF Foundation from my family and friends.... just to name a few.
Ten years later, I remember the scared young girl that sat in that hospital. Actually, sitting in my 13th floor downtown office writing this, I can look out the window and see the hospital across the river. I remember so vividly all the bad days that have happened inside those walls. Days that I felt like my world was falling apart, that cystic fibrosis had "won." I use to be ashamed and angry with myself. But you know what? It's been 3,653 days since I walked into that hospital and started this journey, so what's a few bad ones in comparison? If I have to muster through a few days to be allowed years worth of hope and happiness, then that's okay. My disease might have taken a W on a few rounds in the last decade, but I'd say I have a pretty solid lead on the final scoreboard.
Sitting in that hospital room, that scared young girl truly didn't believe she would even be alive ten years later to look back. And she was half right. Obviously not about the being alive part... spoiler alert, still very much alive and kicking it. But I'm not looking back (minus this not so brief reflection and extensive stalking I did of my own social media to make the following video). I'm looking forward to the next ten, because I believe they will be even better than the last. I know they won't be easy. There will still be blood, sweat and tears (and probably plenty of other bodily fluids), but that's just all part of the contract. This disease puts up a good fight and sure, it can knock me down, but it definitely hasn't and won't break me. Not as long as I have my faith, family and friends. Plus some decent health insurance, a good specialty pharmacy and maybe a lifetime supply of beef jerky to keep my stamina up.
These photos are just a small glimpse into the last ten years of my fight against cystic fibrosis (p.s. please don't judge my very cheesy music choice). The good, the bad and... well, not the ugly because I unsuccessfully tried to access my Myspace account today only to learn it's no longer in existence, so tragically, the most embarrassing of the bunch are forever lost in cyber space. What a shame... except not really. I hope you all enjoyed my little trip down memory lane as much as I did.
Until next time, which even though I am that bad at blogging, I promise won't be in ten years :)
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