DC’s Finest Campaign

As many of you know, I was born with a genetic disease cystic fibrosis (CF). If you are new here, CF causes extra thick and sticky mucus throughout my body. You wouldn’t know that mucus can cause so many problems but it’s actually found in every major organ of our bodies. Particularly in the lungs, making it harder to breathe, sinuses, causing chronic sinus issues, & digestive systems, making it hard to digest and absorb nutrients.

Because of cystic fibrosis, I have fought for every breath I have ever taken and every pound I have ever gained. While CF can be an awful disease, I have chosen to choose joy through it all and remain positive. CF has tried to take my life many times in my short 26 years. And one time, especially, it almost succeeded. On June 21, 2016 I received an emergency, life-saving double lung transplant. My life was hanging by a single thread but I’m a fighter and I fought with everything I had (and a lot of help from my amazing doctors) to stay alive.

I was invited by the Cystic Fibrosis Foundation to participate in a program called “DC’s Finest.” DC’s Finest honors the area’s best and brightest young professionals. I was selected because I am not only making a positive local impact but because I am committed to supporting the CF Foundation’s mission, a cure for cystic fibrosis. Through this 17-week leadership program I will have the opportunity to attend professional development classes and meet other like-minded individuals.

The Cystic Fibrosis Foundation is part of the reason I am still alive today. As the world’s leader in the search for a cure for CF, virtually every approved cystic fibrosis drug therapy available now was made possible because of the Foundation and its supporters, people like you! The Cystic Fibrosis Foundation will not stop until a cure for ALL with cystic fibrosis is found. And that cure will come sooner rather than later because we are CLOSER THAN EVER.

It has become one of my personal missions to raise awareness about cystic fibrosis and support the CF Foundation in any way possible. I want SO BADLY for CF to stand for Cure Found. I am honored to be selected as a Finest this year. Here are a few ways you can join me in my fight against cystic fibrosis, to be part of finding a cure.

  1. Purchase a ticket to the Breathe Easy Bash, our final DC’s Finest event. A night full of food, drinks, silent auctions and FUN! It will be held on August 22, 2018 at District Winery in Washington, DC. Tickets may be purchased HERE.
  2. Donate to the Cystic Fibrosis foundation through my Finest campaign HERE.
  3. Ask your company to become a corporate sponsor for our Breathe Easy Bash. (Please contact me if your company would like to become a corporate sponsor.)

Thank YOU for your support!!

Why I Decided to Take Time Off From Work

I wrote a blog post for the Cystic Fibrosis Foundation that went live yesterday. You can find the post below and you can also find it on the Cystic Fibrosis Foundation blog here. I hope you enjoy!

“I have always been someone who wanted to work. When I graduated with a degree in finance in May 2013 and started my first career job that September, I was pleasantly surprised to find that working 9 a.m. to 5 p.m. helped me become more compliant with my CF treatments than ever. The days I found myself missing a treatment were on the weekends when I wasn’t on a schedule, and friends were asking me to hang out.

Don’t get me wrong — waking up was HARD most days and I felt exhausted a lot. But, once I arrived at work, I found camaraderie, meaningful work, and goals. I was glad to be there. Overall, work kept me motivated and on a great schedule.

When I was working, Monday through Friday looked almost identical. I’d wake up, do my treatments, go to work, come home, eat dinner, watch TV and hang out with my roommate, do my treatments, and go to bed — like clockwork. Doing my lung care allowed me to stay healthy enough to work, and having a work schedule positively correlated with my CF treatment compliance.

Then, in June 2016, my health took a rapid and unexpected turn for the worse. I told my manager that I’d be back to work in one week. In actuality, I was out of work for 11 months. In just a few days, my lungs declined, and I was placed in a medically induced coma and connected to an external lung machine called extracorporeal membrane oxygenation (ECMO). I was immediately listed for a double-lung transplant, which I received just days later. I spent four and a half months in the cardiovascular intensive care unit (ICU) at Inova Fairfax Hospital, and did a lot of rehab at home after that.

Jackie-Price-Hospital-Rectangle

Once I was able to walk again and my health started to improve, I frequently made comments to my doctors about how I wanted to go back to work. For a while, they said I wasn’t ready. But finally, in May 2017, I got the OK to head back to the office. It could only be for eight hours per week, but it was something.

For two days a week, I went to the office for four hours. Then, I increased it to 10 hours a week in another couple of months. However, I was always stressed about appointmentsinterrupting my work schedule.

I frequently thought to myself, “They have just given me 11 months off from work and now I need to change up my schedule, again, because of an appointment?” I felt guilty. When I’d call a doctor’s office to make an appointment, the first thing I would blurt out was, “It can’t be on Tuesday or Thursday until after 2:30 p.m.” Sometimes, the doctors only were in the office on those days and I’d spiral into, “Okay, how am I going to work this out with work?!” Because I was being followed closely by my medical team, I had appointments scheduled pretty much every week.

I continued to work 10 hours per week until mid-October 2017, when I spent six weeks in the hospital due to complications out of my control. That hospitalization made me realize I needed to focus on ME. I realized I needed to be 100 percent before I started working again, and that I was actually a little crazy for going back to work seven months after being discharged from my transplant hospitalization and less than a year after the trauma I had been through surrounding my transplant.

The decision did not come easy, though. I cried as I emailed my manager to let him know I wasn’t sure when I could come back. But, after I pressed send, a weight was lifted from my shoulders. I no longer would have to worry about scheduling or feeling guilty on behalf of my company. I had to put my health first, no matter what.

For those of you making a similar decision, don’t feel bad if you have to take time off from work. And, always prioritize your health! That being said, here are some tips that I found helpful while navigating the experience of working with CF — from managing my schedule to deciding to take time off.

Some tips I have for those living with CF and working full time:

  1. Have a set work schedule, if possible. Do your treatments at the same time every day. Stay on a schedule.
  2. Don’t overwork yourself. Working eight hours is an accomplishment.
  3. If you are not feeling well, call out. Missing one day of work is better than making yourself sicker and missing a week.
  4. Ensure your life isn’t only work and treatments. Have some fun.
  5. Once you’re hired, decide whether you will tell your coworkers that you have CF. I’ve always told mine and everyone has been so understanding. They don’t even notice the coughing spells after a while … and no one will ask you if you’re sick.
  6. Be deliberate about managing appointments. Schedule for the very beginning of the day, lunchtime, or at the very end of the day.
  7. Don’t leave your health in the wind. YOU and your well-being are ALWAYS number one.

Some questions to ask when making the decision not to work:

  1. Is it getting in the way of your medical appointments/care?
  2. Is there any way to make both your career and your medical care work?
  3. Is your health declining because of work?
  4. Is it too distracting?
  5. Will work set you back in your recovery?

Ask yourself if not working is the right decision; you will know.”

Jackie-Price-Get-Well-Soon-Team-Photo-Rectangle

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.

Falling Behind: How Organ Donation Allowed me to Catch Up

Looking back now, I realize how much I pushed myself. “I am doing well!” was always the answer I gave people when they asked how I was, as if to convince myself. My lung function was 28% and in reality, every day was a struggle.

IMG_1012
Thomas Rhett & Jason Aldean – May 2016

I had breathing techniques just to help me get through putting away my laundry. Making my bed was a chore that took well over the normal time that should be taken to make a bed because of the breaks I took at each corner. I was the person everyone hated in the elevator because I took it up only one level…I became very accustomed to the dirty looks after pressing 2 from level 1. I would call an Uber to take me two blocks to the next restaurant after my friends & I had brunched in Washington, D.C. “I have a lung disease,” I would tell drivers so they didn’t think I was just lazy. My friends would give me piggy back rides up the stairs to a D.C. rooftop. Walking anywhere was not an option. I would see my friends briskly walk in front of me and wonder how nice it must be to walk so fast, so easily. I tried to keep up but I was falling further and further behind. I never wanted to miss a wedding, country concert, or brunch. So I went and I had an amazing time. I wanted to work, so I pushed myself. I loved my job (still at the same job working part time!). To me, living life was the only option and I would give everything I had to do just that.

Wedding - Memorial Day Weekend 2016
Wedding – Smith Mountain Lake, VA – May 2016

As June approached, my mom was coming over at least twice a week to bring groceries and help clean up. I didn’t have the energy to go to work every day, hang out with my friends, and do adult things like cook and clean. So I chose work and my friends to focus my energy on…those were the fun things, right? And all of my energy, it took.

My transplant journey may have been unplanned at the time and may not have been like others with cystic fibrosis. I wasn’t ever on oxygen and I never wondered each day if I’d get a call for lungs, I wasn’t awake to do that. But I know what it’s like not to be able to breathe. To have to spend hours a day doing treatments just to function. What it’s like to watch friends participate in kickball or pick up soccer leagues and wish to do the same. I know what it’s like to experience that cough attack in a public place while people watch & wonder what is wrong. To miss birthdays and get togethers from being in the hospital with a lung infection. I’ve experienced that person who says, “I’ve got that too,” after a cough spell and the only thing to do is smile and awkwardly laugh. I know what it’s like to try to catch your breath, I tried for 24 years.

New York City - August 2017
New York City, Central Park – August 2017

Today I can breathe because of organ donation. Because of my donor, Samantha. My lungs no longer have cystic fibrosis (the rest of my body still does…I will do another post to explain this). I can do things without worrying if I’ll be able to catch my breath. Avoiding walking a block is in my rear view and I’m not looking back. I no longer constantly cough (while I do miss my 6 pack!) and taking the stairs is possible. I can exercise for more than mere minutes without feeling completely out of breath. I’ve walked the streets of new cities, visiting family and friends. I enjoy the outdoors now and plan to more spend more time there, biking & walking & exploring. There is so much I can do and so much I have done and so much that I plan to do. The possibilities are endless. My life has changed because of organ donation. Living is still the only option I give myself today. But living is a lot easier when breathing is easy too.

 

Anya

I lay in my hospital bed in room 224 in the CVICU at Fairfax Hospital. I turn my head to the left and see a young blonde woman pass my room. “She must have cystic fibrosis,” I think. There are not many people under 50 in the cardiovascular ICU, or any pulmonary floor for that matter. And when there are, my first thought is always CF. She has a trac in her neck with a tube tracing back to a ventilator pushed by a respiratory therapist. My next thought, “She must also have had a lung transplant.”  Then she walks around again, and again, and again. Each time she passes, before I knew it, she is back again. I look to my mom & tears start to run down the side of my face. “I want to be her. I want to be able to walk the halls with my ventilator,” I mouth, unable to speak because of intubation. I want to be walking so badly. I want to be able to move so badly. At that moment, I want to be anywhere except where I am. “You will be, Jackie. I promise, you will be,” my mom responds, holding back tears herself. Anya passes my room day after day, multiple times a day. Dr. Brown comes in during her usual rounds and I write to her in a notebook, “I want to be her. The blonde woman who walks past my room.” Unable to say much, Dr. Brown simply replies, “She is on a different journey than you.” But she takes note.

Anya
Anya Crum Huie
Later that afternoon, a woman from the hallway hands my mom a note. The corner has been ripped from a sheet of paper, on it said www.anyasstory.com. Curious, I immediately ask my mom to get my phone. With hands barely strong enough to hold it, I go to the web address. I read Anya’s story. I find out that she had a transplant in 2008. That she had won 2nd place at the transplant olympic games in the 100m dash. She had an amazing husband and an extremely supportive family. All of this she shares with us, people she doesn’t even know. I also find out that her body rejected the first set of lungs she received and she went through a second transplant in 2014. So I am right, she did have a transplant, but that’s not why she is in the hospital this time. Her body is also rejecting the 2nd set of lungs and she has developed an infection. Some people would feel defeated. But from what I witness, not Anya. I’d never met her and I could tell she was more determined than ever just by the way she passes my hospital room every day. One day, on the ventilator, she walks a mile around the CVICU. That is over 15 laps. Amazing.

Anya’s mom comes by my room just to check in and see how I am doing. This becomes a regular occurrence along with Anya’s walks around the CVICU & past my room. Except now Anya smiles & waves. We are friends. We could never actually meet in person because of cystic fibrosis and because of the bugs we each might cary. But we are friends. People with CF, they just get each other. It’s almost like an immediate bond is made when you find out someone has CF.

That summer I learned a lot watching Anya walk past my room. I learned that everyone is on their own journey. No two people are the same. I learned that it wouldn’t be easy, but I could be walking the halls on my ventilator. And I would be soon. I learned that someone could have the worst possible thing happen to them post transplant, but still have sheer determination. She inspired me before I ever even said “Hi” to her. I wanted to work hard and get through my tough time because I saw Anya walk past my hospital room, fighting CF and fighting rejection. In my mind that’s what inspiration is, someone making you want to be better or do something more. Anya did just that.

Anya lost her battle with CF on September 7, 2017. Anya reminded me of something important. You don’t know what someone is experiencing just from watching them walk the halls past your room. They may appear the strongest of person, but are fighting a battle of their own.  Anya also gave me hope. Hope that I would make it through and hope that I would be walking the halls, just like her. Anya and I may not have been close friends, but one thing I know is that I will never forget watching her walk past my room every day.

People with CF, they should never be forgotten for they are some of the strongest and hardest fighters. We know how precious every breath truly is. The ones who lost their lives fighting to breathe should be a reminder that a cure needs to be found. That people with CF & lung transplant shouldn’t be fearful of the word “rejection” because that word shouldn’t even exist in our world. The CF Foundation is leading the fight against CF and recently, CF transplants and rejection. To find out more and donate in honor of Anya Crum Huie please visit http://www.cff.org.

Meet Dr. A. Whitney Brown

I’ve decided to share stories about important people in my life. Every so often I will feature someone on my blog. It may be a family member, doctor, or friend. Anyone who has shaped me into who I am today.

My first post will be about Dr. A. Whitney Brown, my primary pulmonologist.Dr. Brown

It was February 2015 and I was dependent on oxygen for the first time in my life. I was in the Emergency Department of INOVA Fairfax Hospital with one of the worst lung exacerbations I’d ever had. I was extremely weak and had the lights turned off. In walked a new pulmonologist I’d never met before. Most doctors would have flipped on the lights to examine and talk to me, but she didn’t. She simply sat on the chair next to my hospital bed. She told me her plan and was determined to get me better. As a patient with Cystic Fibrosis, I know a lot about medical care. Over 26 years I’ve learned things that can’t be taught in a classroom. Because of this it takes time to trust medical professionals. But I trusted Dr. Brown right away. And right I was too. She & a team of doctors led me out of that exacerbation and off oxygen.

Over the next year I started to see Dr. Brown regularly, every 1-3 months depending on how my health was doing. We talked about medicine but we also talked about life. About work, about my social life. Each visit I felt like she got to know me as a person and not just me as a patient.

Then in June 2016, I needed a double lung transplant and I needed one badly. I was in a medically induced coma and I hadn’t done all of the pre transplant testing yet. During that hospital stay they had planned to start testing for very early phases of the transplant process. Dr. Brown knew me well, though. She knew I was a compliant patient and she knew I could handle transplant life. It was Friday afternoon and the insurance companies would close for the weekend. Dr. Brown made the decision to get insurance approval before then. She was smart. Donor lungs were found that weekend. And my life was saved the following Tuesday.

Life happens in serendipitous ways. Had I not let Dr. Brown get to know me as more than just a patient, I may have never received those lungs. It’s not easy to get listed for any organ. Certain guidelines have to be followed and your case presented to a board of people. Dr. Brown was able to vow for my character and the way I handled my health. Because of her I was listed for a double lung transplant & I will forever be grateful.

Dr. Brown is still my doctor post transplant and we still talk about more than just medicine when I see her in clinic.  When my mother’s there, she says, “Two pretty people.”  She’s an amazing doctor who truly cares. Us patients of hers are so lucky!

I though it would be fun to ask her a few questions:

1. Why did you decide to become a doctor, a pulmonologist specifically?

I always wanted to be a doctor from a young age. It was either a doctor or a teacher…. and my dad told me doctors make more money and encouraged me to go in that direction. At one point, I remember saying I wanted to be a teaching doctor. I went into pulmonology for critical care. It is a combined fellowship training of both pulmonary and critical care. However, the more training I got, the more interested in pulmonary I was. During my fellowship training at UNC, my favorite parts were cystic fibrosis and lung transplant.

2. What is the best and worst part about being a doctor?

The best part of being a doctor is the people who you get to meet and develop special relationships with over time. The worst part is the long hours, and working weekends and holidays… which takes away from your own family.

3. What do you enjoy doing for fun?

For fun, I like traveling, going boating, and snow skiing with my family. I enjoy going out to dinner, to see live music, and dancing as well.

4. How many countries have you visited?

Not sure. I think around 15. But hoping to go visit many more over time.

5. What is your favorite food?

Mac & cheese

Mac & cheese is one of my favorites, too.

Why not me?

I learned a valuable lesson from my dad. Dad & IHe is 59 years old and has had muscular dystrophy for the past thirty years of his life. We understand each other & I think it’s because, although very different, we both have medical conditions.

People often post about loved ones never asking why, seeming to make them appear stronger. But the fact is, they probably internalized the question “Why me?” at some point after a difficult diagnosis. They just chose to move forward, accept the life they were given and make the best of it.

It’s human nature for the thought to come across our minds and we shouldn’t feel bad about it. We also should never sulk on it, either. Because the answer to “Why me?”, it will most likely never be found.

When I was laying in the hospital bed last year, only able to move my fingers, unable to breathe on my own, the thought “Why me?” ran through my mind. I cried. At first, I cried every single day. I stared into space, a lot. I felt emotions I still can’t even comprehend or express. I was so thankful to be alive and to see my mom’s face when she walked into my hospital room every day. I was also in a lot of pain, physically and emotionally.

So when “Why me?” crossed my mind, I remembered what my dad had said. “Why not me?” I wasn’t exempt from bad things happening. I am no more or less special than the person who was sitting next to me on the train on Sunday. No more or less special than anyone. This is what I think people forget. Sure, not everyone ends up in a medically induced coma for a month and even fewer people have to experience daily life with Cystic Fibrosis. But we are all equal. And no one is exempt from life. If you’re fortunate enough never to have to deal with something bad happening, then I am jealous. But I don’t thing that person exists and if they do, let me know.

So next time you ask “Why me?” in a bad situation, don’t feel ashamed about it. But always follow it with “Why not me?”. You at least will have an answer.

For the Love of Shoes

High heeled.

Low heeled.

Boots or sneakers.

When it’s rainy, feet stay dry.

On the floor, in the closet,

Hanging behind a door.

Black and brown

And some are tan.

Some are plain

And some are patterned.

They make or break an outfit.

Wear them to work

And wear them to run.

Wear them everyday.

And when they wear out

It is so sad.

Replace them with another pair.

For my first Favorite Things post, I wrote a poem about shoes. Why? Because shoes are one of my all time favorite things! Retail therapy is real, my friends. A few months back DSW was having a sale and I had a $10 off certificate. So I decided to buy a new pair of flats for work. I already owned a pair in a different color, but they were so comfortable (& cute!) I decided to buy another. I texted my friend telling her I wasn’t sure how getting a good deal on a nice pair of shoes could make someone so happy. But it did! Pure happiness.Aldo Flats

It’s hard for me to find comfortable shoes these days. After my transplant, I developed neuropathy in my feet. On top of that, they swelled to the point where I couldn’t wear shoes at all. After I was discharged in October 2016, I wore slippers, even in public, for a at least 3-4 months. You know how they say after your feet swell from pregnancy, they’re never the same?  Well, it’s true! …except I wasn’t pregnant. When all the swelling had gone down, my shoe size had gone from a size 7 to a size 7.5/8 and my feet were very sensitive. They still are very sensitive. Don’t touch my feet!

When I was bored, recovering in the hospital, one day last year I went on a small online shopping spree and bought a few pairs of booties for fall. Hey, I needed a pick me up! Almost all of those shoes were donated, unworn, because I couldn’t fit into them anymore. I’m imagining them now, turning someone else into a shoe addict! I now am very cautious about what shoes I buy and where I buy them. I need to make sure they’re comfortable and fit well…You’d think I would have done that before, but as a certified shoe addict I was more concerned with looks & a good price than quality & comfort.

Frye Boots
Last week my mom went with me to a Frye Company store. I had some birthday money and she also wanted to treat me to a “you’ve made it to this point” gift. So together, we purchased my first ever pair of Frye boots. They’ll last a lifetime & I am in shoe love. Comfort, quality & looks! Can’t beat that. The first day of October is here and the weather is cooling down, it is finally time to pull out the boots!

What’s your favorite pair of shoes?

I Forgot to Introduce Myself

Hi everyone! I just realized I’ve never introduced myself. So here it goes…

My name is Jackie Price and I’m a born & raised Virginian.beach It’s the greatest state (in my [non] humble opinion) because it’s a short drive to the mountains and the beach (which I love)…the best of both worlds. On the weekends I’m usually hanging out with my family or friends. I’d say (I think my friends would too) that I’m the quirky one of the group and maybe a little weird. Or a lot weird, it just depends on who you’re asking. I ask a LOT of questions. But hey, I’m a curious person & if you haven’t given me enough information what else am I supposed to do? I put A1 Steak Sauce on my rice…and on my steak, of course. My favorite food? Yupp, you guessed it, rice. Or sushi. I can’t eat raw fish anymore so I stick with the cooked stuff now. People usually think I’m about 8 years younger than I actually am. (I’m 26.) But in 10 years I’ll appreciate that, right?! I own a [semi] hairless dog named Fae.

Fae
Fab Fae.

She’s so ugly she’s cute. My favorite store is Target, basic right? Wegman’s might tie though. How does one love a grocery store so much!? I actually work in the corporate headquarters of another grocery store (that I also love…I can’t tell you which one, you might show up at my office one day…), so maybe that’s how. And if you’ve never had Popeyes onion rings, go. right now. and try them. Oh yea, and I have cystic fibrosis & had a double lung transplant last year.

So here I am telling my story to the world (or whoever decides to read my blog).

I decided to start blogging because I have not been dealt a royal flush or even a pair in the game of life. I’ve been through a lot of $%*# in my 26 years on earth, more (a lot more) than some people ever will in their entire lives. And you know what, that’s ok. Because life isn’t fair. But I’m still here today, remaining positive and living my life. I’ve learned a lot over the years, about myself and life. I know that I can help others who weren’t dealt that royal flush make it through anything. Or someone who’s just having a bad day. We can make it over any speed bump, or even mountain, together.

One day I’d love to do inspirational/motivational speaking. (If you’re interested in hiring a speaker for an event or assembly, contact me. I’ve been told I’m pretty good (I’d have to agree) & I’ll do it for free…for now.) So that’s the goal I’m working to…& I’m a hard worker so I know I’ll get there.

So, come follow along! No but really, enter your email address in that little box under Follow My Blog and click Follow. You won’t regret it!

Have any more questions for me? Post a comment and I’ll answer it!

 

Wow, Communication!

It was Sunday June 12th, 2016 and I sat enjoying a Wendy’s chicken sandwich, fries & a fountain coke. My friend Gabby had brought it, at my request, when she came to Inova Fairfax Hospital to hang out with me for the evening. This was my last memory.  A rare and unexpected fungus ignited my cystic fibrosis lungs. After an all night effort to keep my lungs breathing, I was intubated and placed in a medically induced coma. My life was saved that night by an ICU pulmonologist.

My next memory, sometime in mid July (I am not sure the exact date). I lay in a bed in the Cardiovascular ICU, turning my head to the left and seeing my mom in the hallway. My mind was blurry, I couldn’t move my limbs, my body was still. Tubes were coming out of my chest, my neck, my arms, and a tube was coming from my mouth, breathing for me. I couldn’t talk. I couldn’t move even if I wanted to. I learned that movement would come back in time but not right then. What happened? Where was I? Why couldn’t I move? My eyes looked left, looked right, up and down and back again.

My mom hurried in telling me she loved me, telling me I had a double lung transplant. “The doctors saved you. You had a lung transplant. Do you understand?” Apparently this was the 5th day she’d come in to tell me this. The medication they use in a medically induced coma has an amnesia effect. I understood what she was saying but still had so many questions running through my mind that I wanted to ask, but couldn’t. The only way to communicate was raising my eyebrows, they told me, to only “yes” or “no” questions. So I raised my eyebrows, signaling that I understood.

The following weeks, patience was tested.

Is the pain below your waist? Is it this foot? Is it that leg? Communicating only with yes and no questions is frustrating. Like a puzzle that sometimes goes unfinished. I just wanted to be able to tell them what was hurting or which way I wanted to be situated. My family adapted and quickly learned my facial expressions when I was annoyed, unhappy, or in pain. We are meant to communicate with our mouths, being specific. I couldn’t do that.

I became the best listener. I would overhear my doctors in the hallways talking about my medical care or my mom talking with visitors. When my friends came to visit they would sit there and tell me what was happening outside the hospital walls. Sometimes I would try to mouth words. Some were understandable while others not. I would feel frustrated they didn’t understand and would mouth more drastically thinking that would help. It only made it harder. Finally I would give up.

Communication tests people’s patience. Communication prevents confusion and let’s people relay their thoughts. Communication saves lives and ends wars. Communication is key to, well, everything. I was so happy when I was able to write, even though chicken scratch, with hands just beginning to reconnect with my brain, just beginning to move again.

The feeling at the time was helpless but I knew that I was going to make it through. I knew it would take a long time but one day I would be able to enjoy my new lungs. That’s what happened but those memories of last year remain clear in my mind.

Have you ever been in a situation where you had a hard time communicating?