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

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”