Thank You CF

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Jackie

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”

The Letter From My Donor’s Mom

I want to share with you my experience meeting my donor, Samantha’s, family. But first I want to share with you the letter I received from Samantha’s mom & later in the week I will share with you the letter I wrote back to Angela. With Angela’s permission, below is the letter I received on June 30, 2017, 1 year and 9 days after my double lung transplant.

“Dear Recipient:

It is with both sadness and joy that I write you this letter. My daughter, my heart passed away 12 months ago, on June 19, 2016. She was pronounced and went home to be with God. 12 months ago you were given the chance to live again, and for that I am so very proud of my daughter Samantha.

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A picture of my donor, Samantha, given to me by her mother, Angela.

Samantha grew up in Wilmington, NC. She was 20 years old when she died. She was a bright girl, and loved everyone. She met no stranger, even though I always taught her “stranger danger” LOL, she didn’t listen. She didn’t care if you were rich or poor, in her eyes everyone was the same. In those short 20 years of Samantha’s life she grew up surrounded by friends, family and her beautiful and sweet dog Benelli Rose (now my Grand Dog). Samantha loved the beach and that is where she spent a lot of her free time.

Samantha was a daughter, Granddaughter, sister, friend, and soon to be Aunt to my beautiful Grandson Brayden. She couldn’t wait for him to be born. Samantha was not a shy girl. She knew her faults and she accepted her imperfections. She laughed at herself and took advantage of opportunities to grow every day. She was not perfect and she was the first to admit it.

The day my daughter died a piece of me went with her. I have spent every second, minute and hour thinking of her. I think about how she will never have the chance to marry, or be a mother herself. I wonder how her life would have turned out, would she have been a doctor, veterinarian, teacher, or a stay at home mom. As parents we expect to die before our children, so when you have to bury one of them it’s like your burying yourself. I have somewhat come to grips that it’s time for me to move on, although it will be easier said than done, but I have two other girls, my Grandson and my husband to live for.

Since Samantha’s passing you have crossed my mind a lot. Samantha was always such a giving person, and her desire to be an organ donor was but one example of her selflessness attitude towards life. I guess I have some peace knowing a piece of her still lives on in five people that I hope she was able to save. The thought of my daughter’s heart continuing to pump and her lungs continuing to breathe is so heartwarming to me.

I guess I am going to end with the hope that you will allow me and my family to meet with you. I would like to tell you more about her and how big her heart was. Maybe it’s too much to ask, but I hope you will allow me this last chance to hear her breathe for someone else, for you.

Sincerely yours,

Angela”

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.

 

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!