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.

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

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

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!

The Lung Transplant Process

Have you ever wondered how a lung transplant happens? My transplant surgeon answered some questions about the transplant process from beginning to end.  This is a general overview & is not the exact process taken for all transplants. This process may also vary depending on the hospital where the transplant is taking place.  He explained this process in an understandable way. Whether you have had a lung transplant or not, I think you will find it interesting.

The transplant pulmonologist and transplant coordinator (who is usually a nurse practitioner or physician assistant) receive a call from the organ procurement organization (an organization that evaluates and procures deceased-donor organs for transplantation) regarding an offer for an organ. They then determine whether or not the donor organs are sufficient for donation. Some organs may be viable, while others may not be. The transplant surgeon then receives a call from the pulmonologist and coordinator with basic information regarding the donor. The surgeon will accept, decline, or ask for additional testing to be done. If they accept, they proceed with the transplant. The procurement surgeon (a transplant surgeon can do procurement and the actual procedure but they never do both for the same patient) drives or flies with two operating room nurses to the other hospital to bring the organ back to the hospital where the surgery will take place. There are four operating room nurses for the recipient and two operating room nurses for the donor. Cardiac perfusion runs the heart/lung machine if it is used during the operation and they help initiate ECMO support post-operatively, if necessary.

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My old, CF, lungs and my new lungs

The process of taking out old lungs is relatively straight-forward but depends on the recipient’s underlying condition. Cystic fibrosis lungs and sarcoidosis lungs are generally very difficult to remove due to chronic infection and inflammation. The lungs are quite literally fused to the walls of the chest cavity and have to be peeled away. (This was the cause for excess bleeding post transplant in my case.) Conversely, COPD, chronic obstructive pulmonary disease, and PPH, primary pulmonary hypertension, are generally quite easy. They dissect out the pulmonary artery (the artery carrying blood from the right ventricle of the heart to the lungs for oxygenation), the pulmonary veins (the veins that transfer oxygenated blood from the lungs to the heart; there are two or three per side) and the bronchus (any of the major air passages of the lungs that diverge from the windpipe). If they are doing a double lung transplant, this process is done for both sides through a clamshell incision (shaped like a curved ‘W”, and is typically cut just below the breasts). If a single lung transplant is being done then it is through a thoracotomy (incision on the side of the chest towards the back).

My surgeon does most of his single lung transplants and all of his double lung transplants on bypass support. There are many reasons for this – his feeling is that it minimizes blood loss, keeps the heart stable while they’re working, and lets him take both lungs out at the same time during a double lung transplant. The alternative is bilateral sequential lung transplant off of bypass but this means that at some point, the new lung and one of the old lungs is in the body at the same time. This leads to potential contamination of the new lung. Not many people do double lung transplants this way in the modern era.

Time is of the essence, in two senses. One, they try to time their explant procedure to coincide with the arrival of the donor lungs. They don’t want a patient sitting on bypass for hours waiting for an organ. Conversely, they also don’t want the donor lungs to arrive before they are ready to put them in…which leads to the second component. In general, the lungs need to be put in the recipient within 6 hours from the time they were removed from the donor. This is why donor organs are allocated on a regional basis. It would not be possible for a recipient in California to receive donor lungs from Virginia. There are centers that push this number up to 7 or 8 hours but the majority of centers look at 6 hours as the maximal tolerable ischemic time (a restriction in blood supply to tissues, causing a shortage of oxygen and glucose needed to keep tissue alive).

The most critical point in the surgery is the airway anastomosis (connection between the recipients airways and the donor lung airways). Blood vessels bleed so if there is a problem its pretty obvious. The bronchial anastomoses do not – if there is a technical error, they don’t know until sometimes weeks later.New lungs are put in by matching the bronchus to bronchus, pulmonary vein to pulmonary vein and pulmonary artery to pulmonary artery. They are all matched up and sewn end-to-end.

A dry run is when it is decided that the donated organ is not viable. This happens 25-30% of the time in lung transplants and less than 10% of the time in heart transplants.

My surgeon’s longest double lung transplant was 8 hours and shortest single lung transplant was less than 2 hours.  This is the amount of time he performs the actual transplant with other medical professionals assuming roles in the operating room before and after.

The advances of modern medicine are quite remarkable. To think that one person can donate an organ to another person is just incredible. Seventy-five years ago, no one would believe heart & lung transplants would be happening.  So far in 2017, my hospital has performed twenty-some lung transplants.

Meeting My Donor’s Family For the First Time

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Samantha’s family & my family

“Hello” I answered the phone. Recognizing the number as one from Fairfax Hospital. It was the social worker. It was weird that she was calling but I had my one year transplant clinic appointment coming up & I assumed she wanted to prepare me for some things we would discuss. “I have a letter for you from your donor’s mother. Would you like me to email it to you?” I was in shock, I hadn’t sent my letter yet. It’s not often that a recipient receives any response from their donor’s family and it’s even more rare that the donor’s family writes first. The only word that came out of mouth was “Yea.” With shaking hands, I immediately went to my email and started to read.

“Dear Recipient,

It is with both sadness and joy that I write you this letter. My daughter, my heart passed way 12 months ago, on June 19, 2016.”

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Angela listening to me breathe

Tears started to run down my face. I continued to read about Samantha. I felt sadness that she had passed away and sadness for the grief her family had endured over the past year. My heart hurt for them. But I was grateful that she left me the gift of life through a new pair of lungs. It was a while before the tears would stop. I immediately called my mom. She thought something bad had happened because I was crying so hard. “I received a letter from my donor’s mom,” I cried into the phone. She came home right away and I read her the letter. She too cried with me. I called my brother, Byron, who lives in Boston. After I read the letter all he could say was, “Wow” and I could hear the tears in his voice. I read that letter many times that day & I still read it often today.

I was planning to hand write my letter to her family and send it after the 4th of July but decided that, since I had received one first, I wanted to send mine out right away. I changed a few things & sent my letter only hours after receiving the letter from Angela. And thankfully I did because the Donate Life Donor Family Advocate was going out of town for the next week & would not have been available to send the letter on to Angela, had I sent it after she left.

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Samantha’s sisters & I (Allison, left & Sara, right)

One thing Angela & I wrote in our letters was that we wanted to meet each other. I was excited she wrote that she wanted to meet because this is something I always wanted. To meet my donor’s family and thank them in person. From the moment I found out I had a lung transplant, my mind immediately went to my donor and since that day I’ve thought about them every single day. Who were they? What did they like to do? I even wondered what caused their death. I now knew that my donor’s name was Samantha, some things she enjoyed and I would later find out more. I was anxious to plan our meeting. We decided on September 9th because my brother was going to Spain for 3 weeks in August and of course we wanted him to be included in the meeting. We decided not to communicate before then so it was two months before I would get to talk with Angela again.

We pulled up to the complex where the Donate Life office was, our planned meeting spot. Emotions I have never felt before started to flood my body. I was nervous, excited and even scared all at the same time. “What would they think of me?” “Will I say something stupid?” Thoughts similar to those you would have before a first date started to run through my mind. This was WAY more important than a first date, though. Then I started to think, “Am I ready for this?” Immediately followed by, “Of course you’re ready for this.” Butterflies started to go crazy in my stomach.

We waited outside until we got the call to head up the elevator. We walked through the glass doors of the office. There was candy in a small bowl near the coffee counter – I ate two laffy taffy’s as I prepared myself for the meeting. We were told it was time. I walked down the hallway and into the arms of Angela, Samantha’s mom. We both cried into each others shoulders. Neither of us had words for the moment, just tears. Angela had told me that for the first time in a year she felt Samantha’s presence. That meant so much to me, that I could give Angela something so special. I let Angela listen to me breathe…hear Samantha breathe for me. Most importantly, I let Angela talk to me about Samantha. The donor family meeting was so important and special to me. The day was all about Samantha, though, & the great gift she left behind.

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Samantha’s dog, Benelli Rose

After our initial meeting, I invited Angela and the rest of her family back to my parent’s house for some BBQ. I had been really nervous to ask for the fear that they would say no. They accepted the invite! We spent the next 4 hours hanging out. We sat out on the screened-in porch all night. I learned more about Samantha and they learned more about me. We shared photos and stories. Samantha’s youngest sister, Allison, is only 16 years old and at first she was quiet. But as the night went on I felt her becoming increasingly more comfortable and talkative – it was so special for her to open up to me. I also got to meet Samantha’s sweet sweet dog named Benelli Rose. I am usually afraid of bigger dogs, but she was so sweet, gentle & kind!

Towards the end of the evening, I stood in the hallway of my parents house with Sara (Samantha’s younger sister) and she said that she felt so comfortable around me. Like we had know each other for more than just hours. I felt the same way; it was an instant bond. A bond that we will have forever.

The night flew by and some parts are even a blur. There is a saying about not remembering everything that someone says, but you will remember how they made you feel. I don’t remember everything we talked about that night but I do remember how I felt. I was excited and happy. I remember laughing & smiling a lot. I also remember feeling sad & holding back tears at times. But most of all, I remember how comfortable I felt all evening.

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Samantha’s parents & I (Ray, left & Angela, right)

Angela, Ray, Sara & Allison & I have kept in touch. We met in Richmond last weekend and it was so nice to see them again. I hope to find my way down to Wilmington, NC one day to meet the rest of Samantha’s family (especially her grandmother) and her friends. I want to see where she grew up and enjoy some of the same places Samantha enjoyed.

Meeting Samantha’s family has been the greatest experience of my life. I encourage all recipients to write a letter to their donor’s family. Even if you don’t receive a response, letting them know how thankful you are is so important. And it could just mean the world to your donor’s family. If your the donor’s family, I encourage you to be open about writing a letter to the recipient and the possibility of meeting them. Angela has told me that she felt angry about Samantha’s death and when she received my letter she felt peace. Knowing that I gave her that, was so so special to me. My decision to write her and meet was definitely the right one.

If you’d like to read my letter to Samantha’s family, click here. To read Angela’s full letter to me, click here.

 

 

Mountain Weekend 2017

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The McDonough’s mountain house.

A few weekends ago some friends & I spent a weekend in Old Fields, West Virginia. It was a weekend of completely disconnecting and having some good old fashioned F-U-N. There was no internet and absolutely no cell service. It is important to have weekends like this where we don’t bother with our phones and we connect with those around us in a different way. We arrived at the mountain house around 11:30am on Saturday morning after a beautiful drive through small towns and a lot of windy mountain roads. Some people had already arrived Friday night, so we were greeted by friends.

The goal of the weekend was also to raise money for charity. We auctioned off the beds on the property. If you didn’t win a bed, you had to camp out in a tent. We had “beer bitches”…Shawn’s younger sister and her friend would get beers (or anything you wanted), at a price. We played drinking games & for each person who participated, the McDonough’s would donate $5.  I’m thankful to them for hosting the weekend!

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Emily aiming for the target.

We started the day shooting bow & arrows and an assortment of guns. One of the rules of the mountain house is that you cannot shoot anything after any drinking which is why this took place first. Let me tell you, shooting a bow & arrow is a lot harder than it looks. I couldn’t get the arrow anywhere close to the target! There was a bb gun, shotgun and handgun. The shotgun & handgun were so loud, ear protection was extra necessary! I was surprisingly good at shooting the handgun and hit the target both times I fired, pow pow.

The day continued as the ladies hung around the picnic area, chatting and listening to music. We gossiped about the ins & outs of our lives and caught up with each other. It is not every weekend that we are all together so we really cherish these times. The guys played games in the yard and goofed around, what guys do. We had hot dogs and chips with helluva good dip for lunch, food I have craved a lot after my transplant.

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Most of the girls.

We played dizzy bat…you chug a beer and then spin around for ten seconds with your head on the top of bat, while the other end of the bat is on the ground. You’re extremely dizzy after and try to find enough coordination to hit a ball. Most people fall straight to the ground! With my hip problems, I had an excuse to watch and laugh at everyone’s tries.

We brought out the bier stick…It is filled with beer and while you press the end of the stick against the wall, beer is shot into your mouth. A friend, Kevin, challenged people to use the bier stick and he would specify a donation amount for each time. We sang karaoke, ate hamburgers for dinner, danced and laughed some more. We ended the evening with a bon fire. Because of my transplant I cannot be near burning wood but I wanted to be able to enjoy the bonfire & guitar sing-a-longs. So I sat up wind and wore a mask. I didn’t spend too much time by the fire.

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The bonfire, blazing!

The sky was so clear, it felt like you could see every star in the galaxy. I laid with my back on a bail of hay and looked up. The weekend was coming to an end but it had been such a fun time. My mind immediately went to my donor, Samantha. How grateful I was to her for giving me a second chance and for my ability to spend this weekend in the mountains with great friends. I thought how amazing and how precious life truly is. At that moment, I knew she was looking down on me, smiling. And I was looking to her, smiling back.

 

 

We ended up raising $1,066! Here is a video I made from the weekend, enjoy!

The Letter to My Donor’s Family

Angela & I
My donor, Samantha’s, mom & I
On Monday I shared with you the letter I received from my donor, Samantha’s, mom. Today, I share the letter I wrote to her. I had wanted to hand write my letter (I had already typed it up) and was planning to snail mail it after the 4th of July holiday when I received Angela’s. I decided to reply that same day via e-mail because I was so anxious to get the letter to her. Next week I will share with you my personal experience meeting Samantha’s family for the first time. My letter to Angela:

“Angela –

I’ve imagined writing this letter to you ever since I woke up and found out I had been transplanted. I’ve been curious about who my donor was, the type of person they were and their interests. I’ve thought of what I would say and the words I would use to thank them and their family because a simple “Thank You” is not enough. I’ve had my letter drafted, prepared to send after the 4th of July holiday, when I received yours. I had always wondered if I would hear back from my donors family. One of my biggest fears about writing is that I wouldn’t receive a reply but decided I had to write because they needed to know how their loved one saved me and how grateful I am.

Thank you for telling me about Samantha, I can only imagine how lovely of a girl she was.

Samantha saved my life on June 21, 2016. I received both of her lungs.

I’m 25 years old and was born with a genetic disease called Cystic Fibrosis that causes sticky mucus to build up in the lungs, causing frequent lung infections. These infections scar the lungs and cause a decline in lung function. I have lived my life as normal as possible despite my disease…attending college, having fun with friends and starting a career. There have been plenty of large speed bumps along the way but I just moved over them and kept going. I knew transplant was going to be in my future but was not expecting it for a few more years.

My lungs took a rapid and unexpected turn for the worse in June 2016. I was placed in a medically induced coma on June 13, 2016 with the hope my lungs could rest and work again on their own. I made the doctor promise me that I would wake up again. My lungs completely failed me days later and I was placed on an external heart and lung machine (ECMO), doing all the work for my lungs. My doctors decided the only hope that I would ever wake up again was a transplant. And so, with the help of my parents and older brother, they listed me for a double lung transplant. Without Samantha’s lungs, multiple nurses told me, I would not have made it another night. I was very very sick.

I won’t say this last year has been perfect, I was in the hospital for 4.5 months after my transplant and I had to build the strength to do everyday life things again like walk and hold a fork to eat. But I have made such great strides and am going to the gym regularly, something I despised before transplant because I would become out of breath. I am back at work part time after 11 months off – it is such a great feeling to be contributing to something. I am hanging out with my family & friends who mean so much to me. I have travel plans for this year to visit my brother, Byron, in Boston and my aunt in Colorado. I enjoy doing art and have a new found interest in taking pictures/videos on my GoPro and creating movies. I have Samantha to thank for this. I want you to know that my body is accepting Samantha’s lungs and I have not had any signs of rejection. Her lungs continue to breathe for me.

A day hasn’t gone by where I haven’t thought about my donor and their family. Now, I finally have a name. I know every day I have here is because of Samantha. I will know that for the rest of my days. I call her my angel looking over me everyday.

I want you to know the type of person I am. I could sit here and write what I think of myself but I wanted you to know from an outside perspective. So I’ve asked a couple of my closest friends to write honestly about me. Here is what they said:

“Jackie makes LOVING life look effortless – because for her it really is. She’s a person who has a true lust for life and all the adventures it brings. She’s the person who won’t give up when there are obstacles in her way or the odds are against her. She’s the person who will, despite everything, find something, some-reason to love life and honestly, she’s contagious in that way.”

“Jackie’s thirst for life is far greater than anyone I’ve ever known. In the midst of her constant hardships with CF, her optimism shines through as she continues to feel immensely grateful for all of life’s gifts. Having had the experience to attend a best friend reunion vacation with Jackie recently brought an insane surprise amount of joy to all of us. The miracle that she is with us today is one we are forever thankful for. I can’t wait to see what life accomplishments are in store for Jackie. She is an absolute warrior, and her strength is inspiring to all. The quote ‘keep on keeping on’ is one she lives by. And she does so with a huge heart, and a smile on her face.”

“I met Jackie when I was 12 years old when she was randomly assigned to my soccer team. At first I thought who is this wild child. She had so much energy it was almost annoying. I remember the day we became friends. We were hosting a soccer party at my house and all he girls on the team were downstairs while the parents were upstairs, with the exception of Jackie. It felt wrong so I went upstairs to talk to her and started a friendship that grew into family. Jackie is my only friend brave enough to tell me like it is and kind enough to want the best for me the same way my parents do. She will tell me if a boyfriend is no good, demand I ask for a raise at work because she knows my worth and refuses to ever let me settle. People like Jackie help the ordinary see all the extra out there in the world. She has taught me to value myself and live everyday to the fullest. She may be a control freak, but its only because she knows exactly what she wants out of life and isn’t afraid to go after it.”

I am happy that you wrote you would like to meet, because I also would like to meet you and your family. I want to hear more stories about Samantha and what she liked to do. More about her big heart and what seemed like amazingly kind soul. I am going to ask that they release my personal email address to you so we can continue to communicate that way. Thank you so much for writing Angela.

Sincerely,

Jackie”