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!!

Thank You CF

An open thank you letter to cystic fibrosis (CF)…

Thank you, CF, for showing me the real strength of a human being and thank you for giving me the strength to fight you. Without you, I would not believe how strong our minds are and how strong our bodies can be. I would not know that a positive mind can influence our body’s health so much. I wouldn’t believe that us humans can go through a lot of sh%# without giving up.

Thank you for allowing me to realize the difference between a small and a big problem, allowing me to know that I shouldn’t fret over the small stuff. I need to focus on what’s important. You’ve helped me realize that I can think independently and that I don’t need to rely on someone else for my own happiness.

Thank you for sending me to an amazing team of doctors who know how to help me. You’ve showed me how to trust these doctors and realize that they know how to go up against you, that their care plans work.

Thank you for the understanding of all the medical terminology that is constantly thrown around me. This has helped me become more knowledgeable about my medications and the care plans, about the treatments I need to fight back against you.

Thank you for making me realize who in my life are my true friends, those friends who put up with the inconveniences you try to create, who put up will all the gross things that come with having CF. You’ve also helped me to cherish those friends who stick around.

Thank you for introducing me to some amazing people. I have met many people through the CF community and social media, people who understand and can directly relate to a lot of the struggles I go through. I understand the good in people and communities of people who come together for causes greater than themselves.

Thank you for showing me that I need to work for the things I want. Having CF makes me work for my health and understand if I don’t, I will get sick. That hard work has spilled over into career and has made me a hard worker in all that I do in life.

CF, thank you for allowing me to realize that there is always joy to be found, despite suffering, and that without that joy, my life would be so different. You’ve given me a story to share, allowing me to spread this joy to others through my story. Because of the joy and my ability to focus on the good, I have fun and I don’t think about you as much as I otherwise would. I’ve learned to take care of you first and second, to push you away, to move on past you, CF.

Thanks for my parent’s strength to have a child with CF, for giving them the energy to walk along me in my fight against you. My parents have been my biggest supporters in conquering you, CF, and not letting you take me out of this world.

And finally, CF, thank you for allowing me not to be afraid of death, realizing that it happens to everyone, and no one knows when it will come. For showing me how precious life truly is, that tomorrow is never promised so I must live in this day, this hour and even in this moment and never take one person or one second for granted.

Cystic fibrosis is hard, is complicated, is painful, is discouraging, and is time-consuming. But CF is life changing. CF is a part of who I am. Would I still be Jackie without it? The answer to that question is “no.” My life would be completely different. I am who I am because of CF and despite CF.  Thank you for helping to bring out my best self, to make me who I am today.

Love,

Jackie

New Hip, Who Dis?!

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New hip as seen via x-ray

A week ago yesterday I had my total hip replacement. And everything has gone so well. *knock on wood* I’m used to some complication happening so it is definitely a breath of fresh air for everything to go as planned. And this hip is WAY better than the temporary hip (called a spacer) that I had for 6 weeks before my surgery. The spacer was very uncomfortable and often painful. I basically laid around for 6 weeks, relaxed and did a little PT. I’m a little sore from my hip replacement but overall, I don’t have pain. I’ve been working hard on physical therapy exercises & walking. Starting yesterday my dad & I will be walking up and down the driveway everyday. Walking is the best exercise because it strengthens my muscles and increases my endurance. I’m using a walker because it allows me not to walk with a limp and I don’t want to get into a bad habit of walking with a limp. I’ve been having issues with my hip since last March. And they got really bad in October, which is when we decided I, for sure, needed a hip replacement. I was introduced to Dr. Hawken and immediately felt like he was the right guy for the job. He has done an incredible job and is an amazing doctor. So THANK YOU Dr. Hawken!!

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Practicing stairs at the hospital

I recently officially resigned from Lidl. In the last 2 years I only worked for 5 months, 8-10 hours a week. Then I had the issues with my hip and decided I needed more time off. So, I technically haven’t really worked in 2 years but was technically employed and on payroll. I’ve been doing a lot of thinking recently about what I want to do with my life and I’m not sure if finance is what I want to do anymore. So, I didn’t want to string Lidl along if I wasn’t sure that I wanted to come back and they also wanted a definitive answer of when I would come back, which I did not have. We ended on VERY good terms and I definitely plan to keep in touch with my team. That company is AMAZING and has been so good to me. So if there is a Lidl store near you, SHOP THERE. They deserve to succeed here in the United States. [I recommend their wine, chocolate & cheese.] I also know for sure I want to live a little with my new lungs. I really haven’t been able to because of all the complications I have had. My summer is full of a lot of travel & I am so excited!

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Walking the driveway with my dad

If I could do anything with my life it would be motivational speaking and starting a non-profit (if you have any experience in this, I’d love some help). I also plan to volunteer more with the CF Foundation and Donate Life/United Network for Organ Sharing.

Speaking of the CF Foundation, I was selected as an honoree for “DC’s Finest.” “The Cystic Fibrosis (CF) Foundation honors a select group of men and women from cities or regions across the country that are committed to professional growth through a guided fundraising and awareness campaign. These honorees exemplify strong leadership qualities, are active in their community and have excelled in their chosen professions. The honorees will enjoy many benefits throughout the campaign, primarily the knowledge that they are helping to better the lives of children and adults living with cystic fibrosis.” I have pledged to raise at least $2,500 dollars by August 22. If you’d like to contribute to my Finest Campaign please visit: https://metrodc.finestcff.org/jackieprice.

 It is also CF Awareness month. So if you head on over to my Instagram page, I am sharing facts about CF every day. 🙂

The End of the Tunnel

In 22 months I have had over 7 surgeries, have spent over 200 days in the hospital and have been to over 100 doctors appointments. And hopefully on April 23 I will have my last surgery for a long while. I feel like I am just feet away from the end of a very long tunnel I have been in. I know there will be other challenges ahead, but nothing can compare to the last 22 months.

I went in for a hip aspiration today. Basically, the doctor sticks a very long needle (after numbing of course) into the joint of your hip and pulls out fluid. The fluid is then sent to the lab and tested for infection. The hip on your “average joe” should not have fluid. Because of this fungal infection in my hip, there has been fluid. But today? Today he could barely even get one drop. Even when he injected fluid into my hip to then remove it right away, my hip sucked up all the fluid and he could not get any back. He said this was a really good sign…hips shouldn’t have fluid and mine no longer seems to. Which means the spacer has worked. I have put all of my trust in my doctors and they have continually come up with plans that work.

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A quote I found on @shinetext Instagram…thought it was perfect!

Not seeing any fluid come from my joint gave me SO much joy today and A LOT of hope. Hope that after my replacement in 9 days (Monday, April 23) I will be able to get to the top of the mountain that I have dreamed of since my transplant.

There are three things that have gotten me to where I am today…my donor, choosing joy, and dreaming.

I want to honor my donor, Samantha, and the gift she left behind for me. I know that these are my lungs now, but I will never forget who they came from. I feel like it is my duty to LIVE to honor her.

I also try to keep a positive mind and choose joy. Of course, there have been many times since my transplant where I’ve felt sad. But I pick myself back up and I just keep swimming. I find things that bring me joy and I do a lot of it…art, hanging out with my friends, shoes, shopping, food.

And lastly I have dreamed a lot…And I’m not talking the dreams you have in your sleep. Day dreams where you picture yourself places, picture yourself accomplishing things. I had a lot of times of uncertainty, but at the end of the day…I never stopped dreaming of what I could accomplish with my new lungs, my new hip and my second lease on life.

Today my doctor said, “I am in awe of you, Jackie.” And I couldn’t help but think, “I am in awe of myself for getting to this point.” This summer I am traveling to Colorado, Alaska & California. This summer I am going to do a lot of living and some of those dreams I’ve had, they are going to come true.

Until next time,

Jackie

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.

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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.”

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The Truth About Scars

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You can’t see my scars

The truth about scars is that we all have them, emotional scars or physical scars. And many times, we won’t see other people’s scars. My scars will be with me forever, but so will all of the doctors who saved my life by giving me each scar. All of my scars tell the story of a procedure that saved my life, a story from a doctor who spent many years learning how to save lives.

Sitting up and looking down for the first time after waking from my medically induced coma was horrifying. My stomach was covered in scabs and scars and wound vacuums. After I became so sick, I swelled. It wasn’t just, “I’m feeling bloated today” swelling. It was, “You looked like the Michelin man swelling.” I more than doubled in size. The skin on my stomach couldn’t handle how fast my body expanded, so it blistered to keep up. And these blisters turned into scabs that have now faded into scars.

There is a new scar on my stomach, a vertical line leading from the middle of my previous scar down my abdomen, about 6 inches long. Together, they form a “T” shape. Dr. Teicher gave me that scar. He emergently came into my transplant operation to open me up because my stomach area was swelling.  He saved my life.

There is the small horizontal line, where a feeding tube used to be, from Dr. Kodama. I gained enough weight to have the feeding tube removed. And a small circular scar in my left groin from ECMO, where a large catheter previously was. Dr. King, Dr. Dalton and Dr. Ryan gave me these scars, working together to get me on ECMO as soon as possible because my lungs had failed. Add in a scar on my right groin from surgery to remove a large hematoma, an internal bruise they had to take out. That surgery took place in my hospital room.

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My body tells my story of overcoming all the odds

I have some scars on my neck, the most visible, from the first time I was on ECMO and from dialysis catheters. There’s a scar from a tracheostomy in the middle of my neck. I was kept alive from these machines that caused these scars. Dr. Howard decided to put me on continuous dialysis and I still believe today he, with his team, is the reason my kidneys gained back just enough function for me to eventually stop dialysis. Dr. Bobby gave me the scar from the trach. Each day I would ask for the trach because I hated being intubated by mouth and finally he said it was time. Dr. Bobby also took my trach out and was the first person to see me without the trach and breathing on my own with my new lungs. Dr. Swamy closed the trach hole, leaving a small line that hides between the wrinkles of my neck.

There is a foot long scar atop my pelvis area from surgery on my hip. Dr. Schulman & Dr. Hymes each operated to clean out the fungal infection and remove a hematoma from my hip area. The tiny circular scars that reside on my arms and chest are from many picc lines and central lines placed by many talented interventional radiologists. I have spent many hours in “IR.”

And I can’t forget about the most important scar of them all, my transplant scar forming a wide “w” from armpit to armpit, the clamshell incision, they call it, which allowed for the transplant surgery without breaking any bones. Dr. Brown decided it was time to put me on the list for a transplant, thus the life-saving transplant, thus the clamshell scar. And Dr. Ryan, my cardiothorasic surgeon, created that scar by lifting my rib cage, scraping out my old, infected, lungs, and gently placing in new lungs. That surgery was 11 hours.

Those are the many scars that fall across my body and those are just some of the doctors who gave me those scars while saving my life. Those scars tell my story of overcoming all the odds stacked against me. Without talking, my scars tell my story. I’ll take all of these scars if it means I have my life.

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.

1/25/2018 – 1/31/2018 on Instagram

As promised, I am going to post my weekly Instagram posts to my blog for those of you who do not follow me on Instagram [@pricelessbreaths] or my Priceless Breaths Facebook group.

1/31/2018

screen-shot-2018-02-01-at-10-50-00-am-e1517501117831.png“Reading gives us some place to go when we have to stay where we are” 📚🤓

Labs this morning. 💉 Lunch with @katiepaxton for her birthday! [[Happy birthday @katiepaxton!!]] 🎈🎉 Refilled medicine container. 💊 Now relaxing with my pup while reading The Encore. [[@charitytd]] 📚

Happy hump day! How do you wind down after work or a busy day? #reading #birthdays #fabfae #pricelessbreaths

1/30/2018

Screen Shot 2018-02-01 at 10.50.10 AMThis is me a little over a year and a half ago. The weekend before I got so sick…heading to my best friend’s birthday dinner. Honestly, I barely recognize the person in this photo. My face is much rounder now, my hair shorter & I don’t wear near as much makeup (except special occasions). But more than that, I’ve grown up a lot. Things that used to bother me don’t anymore. My interests have changed. And while my view on life has always been a little different than my friends, that’s changed too. I’m proud of the person I’ve become. I’ve become a better person. A less judgmental person. More loving and accepting. But I’m also still me. Goofy and weird. Some of the worst parts of me changed for the best. 💜 #thisisme #throwbacktuesday #lifechanges

1/28/2018

Screen Shot 2018-02-01 at 10.50.18 AMLaugh every day! 😂

@katiepaxton & I are the best looking laughers, we know. Her mom was just sitting down & the bench broke. We’re talking wood snapping and down they went. So funny & caught on camera!! It’s always the best when a truly happy or funny moment is caught on camera.

I hope everyone has a relaxing sunday! It’s a rainy day here in northern virginia so I am cuddling up & watching movies. What’s your sunday plan?? #sundayfunday #laughter

1/27/2018

screen-shot-2018-02-01-at-10-50-26-am.pngDo you see the glass a quarter full or three quarters empty?? …all i see is wine. 🍷

But really, life is about perspective. Getting through the hard times comes from your mind actively reminding yourself that you can make it through. 💪🏼 Are you going to look at what you don’t have and can’t do? Or are you going to look at all you do have, what you can enjoy and what you’ll be able to do when the hardships end? It’s all up to you. You’re the only one that can control your mind & your attitude. 🧠👊🏼

Spent the afternoon at a local winery celebrating @katiepaxton’s birthday! The weather was beautiful ☀️ & today was so fun! 🎉🎊🎈 (disclaimer: not my wine) Oh & the little man hanging on the glass, his name is Chad.  #winery #paradisespringswinery #glasshalffull #birthday

1/26/2018

Screen Shot 2018-02-01 at 10.50.35 AMSTAYING HEALTHY IS MY FULL TIME JOB • [Because of cf, how complicated my case is & hurdles i still have to jump] I have had an average of 1-2 doctor appointments a week since my transplant discharge in Oct 2016. Over 60 appointments in less than 1 1/2 years. That doesn’t include the weekly lab draws, hospitalizations & surgeries I’ve had. It’s been tough, but I’m tougher!! 💪🏼

My white blood cell count has been low & last night I started to run a slight fever. [[low white count + fever = bad]] The fever is gone & I’m feeling good but today I had to go in to get a neupogen shot. It promotes the growth of white blood cells. With transplant your white blood cell count can’t be too high or your body will start to attack your new organ but it also can’t be too low or you will have no immune system to fight off anything. So hopefully next week, when they draw my blood, my white blood cell count will be up! 🤞🏼

Have you ever taken a neupogen shot? If so, what side effects have you noticed?

I hope everyone has a happy friday and a wonderful weekend!! 💜💜 #whitebloodcellcount #shot #medicine #friday

1/25/2018

screen-shot-2018-02-01-at-10-50-45-am.pngI truly believe ANYONE can learn to draw. It takes time & practice. don’t sell yourself short, you’re an artist!! 👩🏻‍🎨👨🏽‍🎨🖊✒️🖍

After my transplant, I started to draw..horribly, might I add! Then @auntbeanartworks came into my life & taught me the simplest of things. We meet up at various places around town and we have a great time. [[great conversation + art = great time.]] She reminds me that I am my biggest critic and to step back & take a look at the work from afar. That has given me more confidence in my drawings. I still have a ways to go but I’m learning and having fun!

Today we met up at a pizza place and I finished up drawing my mandala. I love it & really, that’s all that matters! 💜💜 #iamanartist #mandala #artwork #micron #penandinkdrawing

Much Love,

Jackie

Health Update #2

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Thanksgiving 2017 in the hospital

It’s been a while since I’ve posted, and I know many of you have wondered where I went. I post a photo to my Instagram account everyday with more frequent updates. You can see my Instagram feed on the right sidebar under my photo. If you click on the picture, it will redirect you there. I am going to try to figure out another way to post the daily updates to my blog so you are notified. But until then here is another health update.

A lot has happened since my last health update. I wrote it all out and realized it was way too long and boring so I’m going to give the short version. I spent 6 weeks in the hospital (with a 2 day break) from October – December. I had sinus surgery, 2 surgeries on my hip, had pneumonia and was in a medically induced coma for 3 days, got rid of the pneumonia, recovered and left the hospital in time to visit the White House. I’ve been feeling really good the last couple of weeks and have been getting out to see friends and have some fun.

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White House Christmas Tour; December 2017

My hip has been the biggest issue. Originally, from MRI scans, my doctors believed I had Avascular Necrosis (AVN or bone death due to lack of blood supply). But we’ve discovered that the bone died because the fungal infection is in the head of my hip bone and has been in the joint fluid surrounding the bone. The infection has likely been there since my transplant or even before, no one knows because I had absolutely no symptoms until March 2017. Then after the washout in March 2017 I had no symptoms until September 2017. During my last hospitalization I had 2 washouts and a large hematoma (accumulation of blood) in my pelvis muscle (SO painful, let me tell you) removed.

Each time they do a surgical washout and put me on an IV antifungal, after stopping the IV antifungal the infection comes back with more force. They need to get this fungus out of my body to prevent it from spreading. And the thing about this fungus is that it is extremely rare. We are talking only 13 reported cases of it in the lungs and a little over 100 reported cases ever. When a doctor hasn’t come across something, they research in medical journals and get information from what other doctors have done. In my situation, there isn’t any of that…so they’ve been working with little to no information. They’re doing an amazing job and they’ve kept the infection confined to my hip.

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Winery fun with friends; January 2018

Yesterday my entire transplant team and orthopedic surgeon met to discuss a plan of action. I was anxiously waiting a call from my infectious disease doctor after the meeting last night. The plan is for me to finish my course of IV antifungal then get another hip aspiration in the beginning of March. (The aspiration only tests the joint fluid. If the fluid is infected that means the fungus has spread from the bone to the joint.) If that comes back clear they are going to put a spacer in. A spacer is a temporary hip replacement that has the IV antifungal stored in it. Slowly, it will release the antifungal directly into my hip. The reasoning behind this is to 1. Get the infected bone out of my body (they cut off the femoral head just like they would in a hip replacement) 2. Make sure the fungus is completely eradicated. I will have that for 4-6 weeks. By the time the spacer is ready to come out it will be April. Then comes the actual hip replacement. I’m seeing my orthopedic surgeon on Monday for more information about the spacer and hip replacement so that’s all the information I have for now.

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Eating a beignet at Bayou Bakery in Arlington, VA

I’m not gonna lie, on the phone with my infection disease doctor, Dr. K, and after we hung up, I cried. Why? Because I am missing my best friends Bachelorette party, plans to visit my brother in Boston and aunt in Colorado. My life is again being put on hold and plans cancelled. It was hard to hear and very upsetting. But I know in my heart that this is the right plan. I know this fungus needs to get out of my body and I’m not going to risk it spreading (and risk my life if it does). It really sucks but I let out all of my tears last night and I’m ready for what’s to come. I’m going to stay positive and find things to keep me busy. Before I know it, I will be walking with my new hip this spring. I’ll be OK…I have been until now after all.

Peace Out 2017!

2017 has been a roller coaster ride. I have climbed, & stood tall, at the top of many mountains and I’ve fallen into valleys. I’ve experienced suffering, sadness, hope and happiness. Sometimes all in the same day. I was stranded in one place & I have traveled to different places. I thought I was horrible at art & I felt like an artist. We lost a dog (Scrappy) & we gained a dog (Fae). I learned I will eventually need a kidney transplant & we learned that my mom and brother are both matches. I found out I need a hip replacement & I found an amazing surgeon. I lost friends & gained new friends.

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Boston, MA – July 2017

What I am getting at here is that with every “bad” thing that has happened to me, something good has also happened. Sometimes not right away, but good things have always come. So we can’t sit on the negatives when surely something good is soon to come. While I know challenges are ahead in 2018, I made it through 2016 and through 2017…I can make it through anything. One year is only 1/26 of my life…that is only 3.8%. And as each year comes that percentage will become less and less. So in time, these challenging years will be a tiny percentage of my life as whole.

I have 8 goals for the new year and I want to be held accountable to reach my goals. So I am making all of them known.

1. Every week, write down at least 1 positive thing that has happened to me. Save them and read them to myself on 12/31/2018.

2. Partake in at least 5 fundraising/volunteer events throughout the year. Whether it is at an event or raising awareness for a cause.

3. Keep a positive mind.

4. Get a new hip and use my new hip to exercise more.

5. Travel to 3 places I have never been before.

6. Go on my first hike since transplant.

7. Make it to Wilmington, NC to learn more about where my donor, Samantha, is from.

8. Take a cooking class & cook more often.

I hope each of you have learned and grown during 2017. And I wish you the most health and happiness during 2018. Stay positive, stay happy and stay strong!! And remember that good things are always to come!

And with that I will say, Happy New Year!!

Some photos from 2017:

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First Lungaversary celebrated with friends
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Getting asked to be in my donor’s sister’s (Sara) wedding
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Fab Fae
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Stone Tower Winery fun with friends
Peace 2017
Peace out 2017!