Superdance Assembly 2018

Today I had the honor of speaking at Bishop O’Connell High School. Each year they have an assembly to kick off the Superdance, a cystic fibrosis fundraising event that has taken place for over 40 years. The Superdance is a 12-hour dance marathon held annually at Bishop O’Connell High School to raise money to help find a cure for cystic fibrosis. The students of Bishop O’Connell have raised more than $4 million since the dance was founded in 1975. This event is the largest high school fundraiser for this cause.

The assembly is full of fun, games & speakers…a way to get the kids excited about raising money but also the opportunity to share stories so they know how important and meaningful their fundraising efforts are. I shared my story with them and hope I left an impact on their lives.

We recorded my speech below:

 

The written version:

This isn’t my first time on stage talking to students like you. When I was in elementary school, I announced how much money the sophomore class raised at the Superdance.  I never guessed I would be back here fifteen years later telling my story.

Can I get a show of hands – How many of you are related to or directly know someone with Cystic Fibrosis? How many of you would still know about Cystic Fibrosis if you went to another high school?

This is why it’s important for me to raise awareness and share my experience of living with CF whenever I can. Many people have “heard of” cystic fibrosis but don’t really know what it is and don’t know how it affects those of us living with the disease. They also don’t know that cystic fibrosis is considered an orphan disease, defined as a condition affecting fewer than 200,000 people. There are only 30,000 people in the United States with CF. That sounds like a lot until you realize there are 1.7 million people diagnosed with cancer annually. Because CF is an orphan disease there is no government funding. This is why your participation and fundraising efforts are so important and meaningful.

My story began 26 years ago. As my mom (who is in the audience) reminds me, I was sick from the moment I was born. Nurses said I was the sickest baby they’ve ever seen make it out of the intensive care unit, also called an ICU. I was in the ICU for weeks, laying in an incubator, hooked up to expensive machines that helped me survive. I was there because my intestines ruptured due to Cystic Fibrosis.

Unfortunately, what happened to me last summer makes the ICU experience from my birth seem easy. You see, on June 21st, 2016, I had a double lung transplant. I received two new lungs.

Let me tell you how I got there. Before I do, let me say this isn’t the story of a “normal” life. But what is normal anyway? I’m honestly not even sure anymore and really, if your life is normal, it is probably pretty boring.

Considering what I’ve been through, sometimes maybe a little boring would be okay. I’ve spent more time in the hospital, taken more pills, and had more surgeries than 10 people with “normal” lives combined.

But when I look back on my childhood, I don’t focus on all of the medical stuff. I look back and remember playing with friends, going on vacations to the beach, sledding during the winters and spending time at the pool during the summers. I’ve never focused solely on my disease because I am not my disease. I am Jackie Price. This is my story.

Today, I take pride in having Cystic Fibrosis and when someone asks why I’m coughing or asks me if I’m sick, I tell them I have CF. As humans, we are naturally curious beings and I always have found it easier to tell someone I have CF and to educate them about what CF is. One person asking me why I’m coughing means one more person learning about the disease which equals more awareness raised.

But when I was in high school, like you all are now, I HATED having Cystic Fibrosis. During my junior year this hatred bubbled to the surface. I rebelled. I stopped doing my vest, a machine that shakes the mucus from my lungs. I stopped my nebulizers, machines that blow antibiotic mist into my lungs. I put my life at risk. And I saw my Dad cry for the first time in my life. Dad’s don’t cry, especially not my Dad. I still remember the day so clearly. I couldn’t even look at him and I had to leave the room.

While seeing me let CF takeover hurt my parents, they had adopted a philosophy that this was my disease, not theirs. They couldn’t force me do my treatments. They could only let me realize for myself that if I didn’t do my treatments, I wouldn’t be able to enjoy life. Then the reality of my actions hit: For 21 days during my summer between my junior and senior year I was confined to a hospital room because I wasn’t taking care of my body. My friends were lifeguarding together, going out with each other and having an amazing summer. I was stuck inside the hospital.

Now, I HATED myself more than cystic fibrosis. I realized if I actually took care of myself, CF would be a much smaller part of my life. If I didn’t, it would be my entire life.

I left that hospitalization a different person than when I went in. I grew up during those 21 days. I had lost a lot of lung function that I never got back. I couldn’t play soccer for as long anymore and coughing became a regular part of my day. But I did my treatments and I made sure to take care of myself. I wanted to go to college, I wanted to experience things every other 20-year-old experienced. I wanted, in a way, to have as normal of a life experience as possible (just not boring). That was my motivation.

I dedicated myself to doing my treatments and doing everything I could to control CF. Overtime, I proved to my parents and my doctors that I was responsible enough to go away to college.

I graduated high school in June 2009 and started my freshman year at Radford University in September. Life was good. Walking was hard. Thankfully, I had the greatest group of friends who would drive me to and pick me up from class. Would piggy back me when I was tired. Who treated me like one of them. I kept up. I had a lot of fun my four years at college.

But balancing my CF treatments, studying, and a social life meant I had to work my butt off. I ended up missing a couple of weeks just about every semester because of a lung infection. I was hospitalized or on home IV antibiotics. I refused to withdraw from classes, though, and I was determined to graduate in four years. I graduated, on time, in Spring 2013. I felt proud and accomplished.

After college, I set my sights on my next goal: travel through Europe. Finding a job wasn’t my first priority. When you live with CF, life is precious. I wanted to see the world. I convinced my older brother in 2013 to travel with me through Europe. It opened my eyes to the rest of the world. I had the most amazing trip.

The next goal, which makes everyone nervous, find a job. I found one – but it wasn’t local. It was in Raleigh, NC. I packed up and moved in September 2013. I loved working. Work kept me on a great schedule with my CF care. I was thriving.

For a year and a half, I worked hard doing my CF care, keeping the lung infections at bay. Then a CF related infection started to take over. This time, it wasn’t because I wasn’t taking care of myself, it was because CF is progressive and sometimes, there’s nothing you can do to stop it. After an extremely tough decision, I moved home to Virginia because I needed the close support of my parents and friends. After a couple weeks in the hospital and a lot of rest later I was off oxygen and feeling better. I took back my life and moved out to an apartment. I worked from home for a while and then felt that I was ready to get back to an office.

I worked for 6 months as a financial analyst here in Arlington. Then CF happened again. But this time, it wasn’t stopping for anyone or anything. You see, that’s the thing about CF, it will come whenever it wants. It doesn’t care if you’re ready. I was admitted to the hospital on June 8th, 2016 with a fever.

On June 11th my lungs started to fail. I didn’t know it at the time. All I knew is that it was getting harder to breath and I was being transferred to the ICU. We would later find out an extremely rare fungus was in my blood steam and had quickly taken over my weakened lungs. In the middle of the night on June 13th, I texted all of my closest friends and told them I had never been so scared in my life. I asked them to pray for me. My lungs were failing right before my very eyes. Around 5am my heart could no longer handle the stress of my failing lungs and I was placed in a medically induced coma. My life changed forever that day.

During the four weeks I was in a medically induced coma my lungs had completely failed me. I was placed on an external lung machine, called ECMO, that oxygenated my blood, controlled my blood pressure, then returned the blood to my body. ECMO is used as a final tool when life can no longer be sustained otherwise, a last resort.

My kidneys failed and my body swelled to more than double its size. While I was sleeping, my family was wondering if they would ever be able to talk to me again, if they would ever be able to hug me again, if I would ever wake up. They were signing documents agreeing to procedure after procedure where the survival rate was only 50%, but if they didn’t sign them I had zero chance of surviving.

One day during those four weeks my doctor said to my parents, “Let’s list her.” They wanted to get me on the list for a double lung transplant as soon as possible. My only chance. It was June 17th, a Friday, and the insurance offices would close for the weekend. My doctors raced against the clock to get insurance approval. If my fever broke and I was eligible to be listed they did not want to wait until Monday. My body was declining fast. They got the approval Friday and donor lungs were found that weekend. I received a double lung transplant on June 21st, 2016…still unbeknown to me, as I lay asleep in the hospital bed. Many other complications followed my transplant. It was touch and go and at certain points, they weren’t even sure I would pull through. I had fought to live during the cystic fibrosis related trauma after my birth and I would fight to live again, 25 years later.

Finally, sometime in mid-July I started to stabilize, and they slowly started to bring me out of the medically induced coma. It took many days. During that period of semi-consciousness, days were a blur. I was still intubated with a tube in my mouth, breathing for me. My new lungs and body were not strong enough to breath on their own.

Then one day I remember seeing my mom for the first time. She told me I was listed for a lung transplant and I received my transplant only 4 days later. A miracle. She told me everything that happened during the weeks I was sleeping. The thing is, the four weeks I was in a medically induced coma was the easiest part for me. The hardest for my family, but easiest for me. I didn’t feel any pain and I didn’t know what was happening to me. I slept and I dreamt, I dreamt a lot. I knew I had been extremely sick but I think the reality of it all hit when my dad told me they discussed with my doctors about taking me off life support. Thankfully, they never had to.

The real challenge came after I woke up, physically and mentally. I still had a tube in my mouth to help me breathe. I couldn’t talk. My muscles had lost all their strength. My brain had disengaged…the term used by my doctors to explain to my parents. I couldn’t move. The nurses would put the bed in “chair position” we called it. Without the support of someone or something, my head would hang like a rag doll. I wasn’t strong enough to hold it up on my own yet.

For a week, I laid still in the hospital bed. It was just me and my mind, racing. I cried. I cried a lot. I mouthed to my mom one day, “I am in hell.” She replied, “I am in hell with you and we’re going to get out of hell together.”

I had polar opposite feelings happening at the exact same time. I was so thankful to be alive. I had survived what many wouldn’t. One of my very first thoughts was about my donor. Who were they? What did they like to do? How did they die? I later would find all of this out when I met my donor, Samantha’s, family.

At the same time, my life changed in an instant. Before I got so sick my lung function was hanging around 28% but I pushed myself. I worked full time and went out with friends on the weekends, now I couldn’t even lift my hand. I knew I had a long road to recovery in front of me and I could either dwell on what I couldn’t do or I could fight to get my life back. And the thing about those of us with CF, we’re fighters. Giving up isn’t an option.

I eventually got a trach in my neck, moving the breathing tube from my mouth to my neck.  I would work on breathing with little support. At first, after just 1 minute I would start to feel like I couldn’t breathe, I would panic. My doctors told me the numbers all looked good but my mind thought otherwise. They’d turn the ventilator back on. It was scary and each day I would spend a little more time off the ventilator that helped me breathe.  I spent hours doing physical therapy. It hurt, my body hurt so bad. Slowly but surely I could lift my arm and then my leg. Then another major milestone, sitting up on my own. Then I would stand. Standing was so scary. I was afraid I would fall forward and face plant. The physical therapists joked that if I fell it would be way too much paperwork. I first stood for one second, then 30 seconds. I didn’t walk for nearly two months. Then one day we were practicing standing with a walker and I said, “I want to walk.” Before I knew it I was stepping, one foot in front of the other. I walked only 10 feet that day. But as each day passed, I walked a little more and then a little more. My nurse would play music to get me pumped up and taking more steps each day. We even recorded this video.

As the days passed, I got a little bit better. It was baby steps. And it wasn’t easy. I would wish for night every morning. Because when it was night it meant that I was going to sleep. To wake up one day closer to going home. And finally, that day came. I spent 136 days, almost half an entire year, in the hospital. And after 136 days I finally went home.

I still have to go back to the hospital at times because of complications and the uniqueness of my case. I’ll be getting a hip replacement next month and eventually a kidney transplant, both due to complications from the medications I have to take to make sure my body doesn’t reject my new lungs. We recently got the news that my mom is a match and will be able to donate me one of her kidneys when the time comes.

On Super Bowl Sunday, someone asked me if I still enjoyed my life, despite the complications I am having. I said, “Of course.” Her response: “You doooo? I would be depressed.” And at that moment, I realized, once again, how strong those of us with CF are. The true strength of a person is shown by how they react during the toughest of times. I love life and I have the will to overcome obstacles. To live. Since my transplant I have traveled to Charleston and Boston. I have visited the White House and have celebrated friend’s weddings. All thanks to my donor, Samantha. I’ll make it through the road ahead because like I said before, those of us with CF, we are fighters.

I’ve learned a lot throughout my life and especially 2016. I learned how powerful the mind actually is. If you set your mind to something, you will achieve it. It will take a lot of hard work, but you can do it. If you keep a positive mind, your body will follow. Living with CF, I already knew how precious every breath is, but having my life hang by a single thread, made that a reality.

Life can change today. Life can change tomorrow. So live in the present, don’t worry about your past, and never take a single day for granted.

I learned that family and friends are two of the most important things you have. So hold onto them.

I learned the power of community, of people coming together to help my family when they were in need.

That modern medicine is incredible, and research is insanely important. That CF research, specifically, is so important. The medications that have been created since my birth, they have saved thousands of lives. The life expectancy was only 18 when I was born. Now, the life expectancy is 47 years old! Incredible!

I can also promise you all the problems from high school won’t matter in 5 years. If you’re struggling right now, it will get better. And if you’re not struggling right now, you’re lucky.

I want you all to look at the person sitting next to you and if they’re your best friend, look to other people around you. (give a few seconds) That person you’re looking at, they’re going through something you don’t know about. Every single person in this room has a story. Remember that before you pass judgement on anyone.

I learned all of this because I have Cystic Fibrosis. Because Cystic Fibrosis has tried to take my life, but it hasn’t.

Cystic Fibrosis has completely changed during my 26 years on earth. I’ve seen it go from very few medications and my mom pounding on my back for airway clearance to so many new medications, some that even help with the root cause of cystic fibrosis. I’ve seen friends pass away at young ages to now kids never spending one day in the hospital. I’ve seen CF research focus solely on creating new medications that help prevent infections to focusing on CF transplant and prevention of rejection because those of us with CF are living long enough for it to matter. It’s been incredible that I’ve lived to see cystic fibrosis change so much. My hope is that the younger generation of CFers don’t have to experience the things I have. That there will be a cure in their lifetime. And that cure will come because of people like you and me. Fundraising and raising awareness for CF. The CF Foundation has taken HUGE strides and are closer than ever to finding a cure. They have led the research efforts and without them, I may not be here. Thank you.

6 thoughts on “Superdance Assembly 2018

  1. Jackie this is beautiful, thank you for remembering my sweet baby. You are so strong and beautiful, keep fighting, never give up, because God has plans for you.
    Ilyabaapaahayn faad 😘

    Like

  2. I have followed your journey since you were born, and you’ve grown up to be a strong, compassionate and courageous young woman who is celebrating and honouring the life she has been given. You are helping to bring light to this difficult journey for the young CFers who need the very guidance and help you can give them. It has been an honour to know you and your truly amazing family.

    Like

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