A Letter to my Donor

16

Apr

A Letter to my Donor

Six years ago, on April 18, 2012 I received the ultimate gift – a healthy set of lungs.  

 

This is my transplant story and finally, an open letter to my donor Chris who gave me a second chance at life. 

 

On April 17th I was called to Columbia University Medical Center (CUMC) in New York City. They had a perfect set of lungs on paper for me and simultaneously while I was on my way in, a team went to harvest and evaluate these lungs, which were located out of state.  It’s a bit of coordination for the doctors to determine the health of the lungs. Were they damaged? Were there contusions or other imperfections? Were these lungs meant for me? The team at CUMC would make the final decision on whether they were a match or not. It was the sixth time that I’d been called in for the transplant, so I wasn’t getting too excited, but I also didn’t let myself get too down. This time the news was good – the transplant was a go! Before I could blink, my team began to prep me. My worn out, diseased lungs were about to be replaced with clear, healthy lungs. My life was about to be forever changed. 

 

Before I went into surgery, my lung function was at a dismal 19% and I spent eighteen hours a day pumping myself with medications and intravenous antibiotics to stay alive.  This wasn’t me. I was a coach, an athlete and an advocate for living a healthy life with cystic fibrosis. This wasn’t healthy! My quality of life was non-existent, and quite frankly, I was embarrassed each time I struggled to walk up a flight of stairs.  

 

As I was wheeled in to the operating room, I remember saying to my family, “Go into the waiting room and wait. I’ll see you later.” What was I thinking?  

 

When I woke up I truly was a changed man.  It was a foreign feeling  for me to have clear lungs and when I took my first breaths I told my surgeon, “these lungs are too big – I think you stuffed them in.” This wasn’t a joke, I was being serious.  I was grateful and knew this wouldn’t just be a second chance at life for me, but for my donor Chris.  We were in this together now. 

 

The last six years have been quite a journey – and that’s very much how I view life – as a journey.  I’ve written letters to my donor’s family each year, but they haven’t responded yet. I wholeheartedly respect their decision, but I felt strongly compelled to write an open letter to this amazing man Chris, who saved my life. 

 

Dear Chris, 

 

There really are no words that can possibly describe how I feel about the unconditional act of kindness and love from you and your family. Every day I am thankful for the gift of life you gave me, and I truly try my  best to honor you in everything I do. 

 

I struggle with the sadness that you had to leave your family and friends behind so I could live, but I promise you I am trying hard to be the best person I can be and I hope I’m making you proud and giving you some laughs along the way. 

 

It is because of YOU that I’m able to live onward and forward in life.  I can tell you some things I’ve been doing but, since we are now one, I guess you might already know. I truly hope you’re enjoying our hectic life – I’m doing my best to live each day for both of us.  

   

I feel lucky in that I have a family who has always been and continues to be very supportive, caring, and loving. I come from a big Irish family, so as you can imagine, sarcasm’s a part of daily conversations and I wouldn’t have it any other way.  My mom, who’s now 86 years old, still treats me like I’m a 12 year-old, but hey, that’s what moms are supposed to do.  I often think about your family and if you too had a mom who didn’t realize you were a grown man! But,  as you can imagine, she’s been a pillar of strength during all of this and still cracks the whip when I need a kick in the pants. Chris, she considers you her seventh child and she truly loves you as if you were one of her own. So, whether you like it or not, if you weren’t already Irish, you are now! 

 

Chris, it’s only because of you that my mother still gets to see me living, breathing and succeeding. 

 

Before you and I met, I was a competitive pole vaulter from the time I was a teenager until I was an adult. I just couldn’t quit the sport entirely, so now I coach at a few schools. These student athletes help keep our lungs young and I have to say they teach us as much about life as I hope we’re teaching them.  They’re nothing short of awesome –  they amaze me every day and they bring so much joy and pride into my life. And, I’m sure you’ve noticed that a few are nationally ranked pole vaulters! 

 

Chris, it’s only because of you that I’m still able to coach. 

 

When I’m not coaching, I’m volunteering as an advocate for cystic fibrosis at the Boomer Esiason Foundation. Sometimes this feels more like a full-time job, but I love it. Previously I had focused on creating programs like Team Boomer, but since I’ve met you, I’ve expanded into grant writing and developing programs like Big Air Jerry and You Cannot Fail to make real community connections and inspire those in the CF community and beyond. Oh, there’s also a documentary out called, “Up for Air” and our lungs have the leading role! Boomer and my entire family at the foundation have always been and continue to support me and all these “out of the box” ideas I present to them. I sometimes wonder if you too had a bit of an outrageous imagination and didn’t take, “no” for an answer. Together we’re a force to be reckoned with! 

 

Chris, it’s only because of you that I can still be an advocate for cystic fibrosis. 

  

And as you know, while your lungs are perfect, there have been some health issues post-transplant. There’s been skin cancer, some rejection and a weakened immune system to name a few, but despite all of this, I have a strong heart to fight anything that comes our way. I’ll be damned if I let something like skin cancer take us down! While I despise these post-transplant issues, it sure beats the alternative.  

 

Chris, it’s only because of you that I have the privilege to see these setbacks as a silver lining to being alive. 

 

Let’s get personal now Chris.  You’ve probably noticed that there are a lot of people in my life. I feel extraordinarily blessed to have friends through work, the CF community and coaching.  And, as you can imagine OUR most important friends are everyone on the transplant team and all the great doctors at Columbia who brought us together as brothers and friends for life, on April 18, 2012. These fine men and women continue to keep us connected.  However, right now, I don’t have that “one” special person in my life. I probably keep myself too busy between my many doctor appointments, work and volunteer commitments to make room for someone, but, as you can imagine, this can be lonely at times. Who’s to say this won’t change in the future?  When I do meet the right one, it will be the only time I’ll be happy to have my breath taken away!  

 

Chris, it’s only because of you that I am still here to experience the roller coaster of life’s relationships as a son, brother, uncle, friend, colleague, coach and I hope much more to come. 

 

Unfortunately, I haven’t been able to meet your family and the people that mattered most you, but I’m hopeful that someday I might.  I want to hug them for a long time and tell them how loved you still are and how your life continues. I would tell them how blessed I am to have you with me and how I’m doing my very best to take care of us every day, twenty-four hours a day.  To honor you Chris, I wear a St. Christopher medal with your name and the date of our transplant. I keep it close to my heart and our lungs. We are one.  

 

Chris, someday my time here on earth will be done and when I head to “the other side” my dream is for you to greet me. I’d love to sit down with you and hear all about your life, your family and your aspirations. Absolutely nothing would give me greater joy. Until then, we’ll keep doing our thing –living, breathing and succeeding together.   

 

Chris, it is because of you that I will forever be connected to someone I’ve never had the great privilege of meeting. 

 

Chris, we will always be brothers in breath – for life. 

 

17 thoughts on - A Letter to my Donor

  • Donna
    Reply Apr 17, 2018 at 2:40 pm

    How beautiful! The tears are running down my face! GOD bless you and Chris! May you have more wonderful years ahead!

  • Patty
    Reply Apr 17, 2018 at 3:03 pm

    I am sure Chris is touched by your letter. Thanks for not only living up to the great honor that is receiving organs but for working so hard on behalf of others with CF.

  • Doreen Ruotolo
    Reply Apr 17, 2018 at 3:08 pm

    Beautiful letter.

  • Ralph
    Reply Apr 17, 2018 at 4:24 pm

    No words can express what I feel after reading this. Thank you for sharing this. I have connected with your Rare Being FB site and share many of the memes. Again, thanks for sharing and God bless you and Chris.

  • Perla
    Reply Apr 17, 2018 at 5:40 pm

    Jerry, this is such a beautiful letter filled with raw unfiltered emotion and truth. Thank you for sharing this with us.

  • Ellen
    Reply Apr 17, 2018 at 6:48 pm

    Lost three siblings to CF. Cannot imagine what you have been through but your letter to Chris is amazing and beautiful and I am so moved. Thank you for sharing and God Bless.

  • Sharon Delaney
    Reply Apr 17, 2018 at 7:57 pm

    Omg Jerry I just read your letter to Chris. I don’t know what to say but it is so beautiful and so true. I feel so happily/ sadly emotional. So I can’t even imagine what it is like sharing your life your body with someone who was so unselfish that gave you after all the years of lung issues the true breathe of life. I can appreciate a lot of your journey as I walked with you. I say at all the time but I wish Jack could see you now. But I’m a believer that he is watching you from heaven.

    You truly are an inspiration. I am so proud of you. You were always a fighter. Now you are a hero, a leader and giving all patients with CF the vision that one day their lives can change.

    Wishing you amazing health, happiness and love.

    It is truly an honor to be your friend.

  • Eileen Lyons Bongiorno
    Reply Apr 17, 2018 at 8:37 pm

    CommentWOW, I’ve got goose bumps. Jerry this is such a beautiful letter. I hope you get to meet Chris’ family so they can see what a special person you are.

  • Lisa
    Reply Apr 18, 2018 at 1:14 am

    Jerry,
    Your humility, gratitude and tenacity are palpable in all that you say and do!…A source of inspiration for us all!!
    I feel blessed to have the honor to know you and privileged to be working with you.
    Lisa

  • Jenny
    Reply Apr 18, 2018 at 1:45 am

    Jerry,
    Big girls do cry. And that letter just made me. I love how much you have honored Chris and his family. And nobody is more grateful for life than you. Keep up the fight you never know what else the future holds for you. Love you,
    Jenny

  • Lisa
    Reply Apr 18, 2018 at 10:05 am

    I am so touched by your story and your life. God Bless you for writing such a beautiful tribute to your precious donor. Your perserverence and overcoming so much from having CF is more than admirable and especially inspiring. I wish you more joy and health through your journey with Chris close to your heart.

  • Fran
    Reply Apr 18, 2018 at 11:50 am

    That was one of the most beautiful and heartfelt letters I have ever read. You and Chris will always be connected..I’m sure his family will want to reach out to you in time.

  • Beth
    Reply Apr 18, 2018 at 2:36 pm

    Thank you for sharing, very beautiful !!

  • Denton
    Reply Apr 18, 2018 at 3:45 pm

    That is an articulate, inspirational message to Chris, Jerry. My journey parallels yours in many ways, as I suffered many years from Alpha-1 until an unknown donor supplied me with the “gift of life” for a bi-lateral lung transplant on March 4, 2014. I was able to walk my daughter down the aisle, toast the newly-wed couple, and have the first dance with the new bride. I am now a proud Ambassador for UNOS and am spreading the gospel for organ donation. Godspeed in your journey, pal…….

  • Tracy
    Reply Apr 18, 2018 at 6:13 pm

    Absolutely beautiful letter. We also never received contact with my daughters donor family but have written many letters of gratitude. Your life mirrors that of my daughter so I can completely understand your feelings. Jerry you’ve always been an inspiration to the CF Community and I’m sure you will be for many years to come. Thanks for being such a great advocate & bringing awareness to Cystic Fibrosis. I truly believe a cure will come in my lifetime. God bless you!

  • Donna
    Reply Apr 19, 2018 at 1:21 am

    You are amazing! Not many people take the time to let their donor’s family know how thankful they are. I really hope you get to meet them someday, so they can have peace knowing Chris is living every step of the way with you..

  • Rose
    Reply Apr 23, 2018 at 7:18 pm

    This beautiful letter and your great gratitude brought out the tears, man! Thank you for sharing, because your life and Chris’ life are truly inspiring! God bless you and your families.

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