Falling Behind: How Organ Donation Allowed me to Catch Up

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

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Thomas Rhett & Jason Aldean – May 2016

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

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

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

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

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

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

 

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Anya

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

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

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

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

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

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

Meet Dr. A. Whitney Brown

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

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

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

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

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

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

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

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

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

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

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

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

3. What do you enjoy doing for fun?

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

4. How many countries have you visited?

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

5. What is your favorite food?

Mac & cheese

Mac & cheese is one of my favorites, too.

Why not me?

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

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

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

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

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

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

I Forgot to Introduce Myself

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

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

Fae
Fab Fae.

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

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

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

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

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

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

 

Wow, Communication!

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

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

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

The following weeks, patience was tested.

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

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

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

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

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

Compensation

Today is the first day of fall 2017 and the first day of my blog.  I found this post my Dad wrote last year while I was still hospitalized from a double lung transplant I had on June 21, 2016 with complications.

September 1, 2016:

“Wow, what a summer. Thankfully, it is almost over and fall will soon begin. My father died in mid-September when I was a young child. I have always loved the spring for the obvious reasons of better weather and the proverbial rebirth of life but my dislike for fall had to do with the negative emotions connected to my father’s death. But now there will be joy in the fall when my bonnie lass returns to the warm embrace of her home. The falling leaves and the cool air will no longer be companions of death but of life. Mr. Emerson has an essay on compensation, which seems to be appropriate. We may not always be given what we want or need at a specific point in our lives but life, at least it seems so to me, has a way of compensating us in other ways. I have been compensated twice now in the fall, the first time when Jackie survived her birth trauma and now having survived her lung transplant. Isn’t life amazing? I look forward to the crisp air and the falling leaves, they will be auguries of life, of the new life my daughter will be embarking upon with renewed energy and vigor. What a testament to her spirit. Twice now, I have been witness to her indomitable will to live. I am so proud of this amazing human being for her zest for life, for the many friends she has, and for her desire to be a productive member of our society in spite of the hand life dealt. What a gift I was given to be her father, I truly have been compensated.”

After the initial shock of finding out I had a double lung transplant, I was excited. I made plans to run for miles and go on long hikes in the mountains. These are things I had so badly wanted to be able to do but couldn’t due to coughing spells and feeling out of breath due to cystic fibrosis. With new lungs and the ability to breathe again, I have gratefully made plans and accomplished some of them. But due to an array of complications, I physically can’t accomplish running miles or hiking mountains right now.  Namely, the medications that saved my life have harmed my hip-joint. It acts up badly these days and eventually will need to be replaced.  Yes, a hip replacement and I’m only 26 years old, but I am going to look at that as small stuff after all of the big stuff I’ve been through.  As human beings we have a tendency to initially focus on the negatives, what we don’t have but want or think we need but can’t get. We all have to bring our minds around to think that in time, things fall into place, think about all that we CAN do and all of the ways life has compensated us.

With my favorite season, fall, rolling around I am focusing on compensation, on how I truly have been compensated. Here are some of the ways:

  1. Being alive
  2. Supportive friends
  3. Having a great job
  4. Great food in awesome restaurants
  5. An amazing Mom & Dad

 

How have you been compensated in life?