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.

 

 

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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”

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.