Wednesday, April 17, 2013

Guest Blog: Friends for LIFE (Part 2)

When I set up this blog I wanted it to be about "Life, Lung Transplant, and Cystic Fibrosis. And Everything In Between." What I learned very quickly is that none of these -- not life, not CF, and certainly not transplant -- is a solitary journey. Because of that realization, A Matter of Life and Breath has been proud to have a number of wonderful "Guest Bloggers" ranging from my friends and family members to a couple of folks who are themselves CFers, organ recipients, or other fellow travelers. All of these contributions have been beyond awesome and so so meaningful. That said, I'm not sure any of the guest blogs to date have touched me personally as much as this one.

I first met Jess after her amazing gift, at an event to support the Cystic Fibrosis Foundation. She was vibrant, full of energy, and clearly excited to be giving so generously of her time and herself to support her friend. Jess ended up saying a few words that evening about why she was there, her gift to Allison, and the importance of supporting the search for a cure. As I listened to her words, I thought back to the statistic that one organ donor can save up to eight lives. Hearing her speak, it became crystal clear to me that while one single donor may directly save eight lives, the impact of that gift is far more widespread. When Jess offered Allison the gift of life, she offered me and many others who love Ali deeply (herself included) many more years with our daughter, sister, "cyster", and friend. She offered everyone who will ever come into contact with Ali the chance to be touched by the miracle of organ donation. She offered all of us with CF the gift of hope, and compounds her gift through the volunteer work she and her friends continue to do for a cure. In every single smile or laugh or good work Ali does for the rest of her long and healthy life, Jess will be a part of that. And she offered all of us the gift of inspiration with her truly HEROIC act. And that, beautiful people, is the gift I want to share with you through this blog. Jess -- our friend, our hero -- take it away:

The Gift

My I.V. was started by a young male intern, who to me, appeared to be approximately sixteen years old. As I inspected his credentials and braced myself for yet another needle poke…hmmm, probably for the twentieth time over the last few months of testing, I closed my eyes and thought of Allison. Across the holding area, behind her own curtain, she was also being pinched and stuck.
When the surgeon initialed my left side with a sharpie, I felt strong, calm, and at peace - with those initials on my side; at least we know they won’t take the wrong kidney. It wasn’t until I had to take a walk with the intern, who now looked like he was about fourteen, that it all seemed to hit me - I’m putting my life into their hands… I’m trusting the doctors and nurses to get me through this… More than that - I’m trusting God to get me through this.

When the doors opened to the operating room, all I could see was sharp, shiny metal…suction looking things…more metal. And a man covered head to toe in scrubs with a splash mask. As two nurses and the twelve-year-old in scrubs helped me up on to the table, I felt tears streaming down my face – when did I start crying? When I was asked to sign another consent form and state the purpose of my visit to the Columbia-Presbyterian O.R., oh hey I had nothing else to do today, I realized that reciting “laparoscopic nephrectomy of the left kidney for donation” while shaking and crying was harder than I thought it would be. I felt the fragility of my life all at once.

Then, it happened. The calm, still, quiet voice I had been listening to in the months prior when everyone looked at me like I had ten heads, washed over me like a warm wave. In my mind and body I was experiencing the greatest fear I had ever felt, but in my heart….down all the way to the bottom of my soul – I knew God was leading me forward and that I had to follow. I had to get to the other “side” of this.  And I did. I woke up four and a half hours later feeling like Rocky after he defeated the Russian. Beat up, but man was I a champ! I didn’t let anyone, or anything, not even a little fear, stop me from doing what I believed I was meant to do. If there was ever a moment where I thought, hey I’m not so bad, it was then.

After an entire day in recovery, I was moved to a bed on the seventh floor, to a unit reserved for transplant patients. It was then that my life changed.

My first roommate had had a kidney transplant from a deceased donor. She was sitting up on the telephone calling a car service to pick her up from the hospital. She walked over to say hello to me. I thought, wow she’s tough. My second roommate had a kidney and pancreas transplant from a deceased donor. She was in and out in a matter of one day. I listened to the nurse’s discharge instructions for my roommate and could not believe the amount of medication she would have to be on for the rest of her life. By the evening of the second day, I was able to get myself out of bed and walk. I had to walk. I had crippling pains and knew the only way to feel better was to get moving.

And I have to see Allison.

I cannot describe how great it felt to see my friend again. It seemed like she had been in recovery forever. Still experiencing complications from surgery, there she was – awake and alive. Sitting next to her in a chair and watching her smile at me, I could see who the real champ was then. It wasn’t me – it wasn’t me by a mile. Lying there in front of me was the strongest fighter I had ever met. I wandered the halls for hours, marveling at the fact that there were a lot of people on our unit, transplant patients like Allison, who had been waiting. In fact, each room was occupied, other people shuffling slowly in hospital gowns passed me in the hallway.

At around one a.m. on the final night of my stay, I received a text from Allison about her good friend Katy. Katy is considered one of Allison’s “cysters”, a term a group of girls all battling Cystic Fibrosis call each other. She was in the hospital, on our floor, waiting to hear if a pair of donor lungs would become hers. I didn’t sleep much that night, and at the first sign of day break, I found myself eager to go to Allison to find out what was happening.

Despite the early hour, the waiting room I passed was full of people…probably Katy’s family, I thought. In Allison’s room I was introduced to another cyster there to support Katy. When Lyndsey, also a double lung transplant recipient extended her hand and called me a hero – I found that I couldn’t speak. She asked if I’d like to come and meet Katy. I followed her to a room down the hall and looked in. There she was, so young, beautiful, with two blonde braids, and an I.V. sitting calmly. She called me a hero, just as Lyndsey had, and I can’t tell you how strange that word sounded coming from these amazing girls. It was the single most humbling experience of my life. I felt overwhelmed with emotion watching Katy sitting there, waiting to know if those lungs would be hers. If she would be able to take a deeper breath.

I muttered something; you’ll be in my prayers was it? And as I turned to walk away I felt the full weight and importance of that moment. In the face of all of that uncertainty and doubt, Katy looked at me and could see beyond her fear. She thanked me. Still awe struck, I had to remind myself of what for. I sat in silence in my room for the next hour and let the realization come over me that my friend Allison had once waited in just this same way. For lungs which finally made their way to her in 2004, and then for my kidney.

One day after being released from the hospital, there was Allison, sitting on the end of my couch eating a gigantic turkey hero as I shivered under a blanket. Is she made of steel or what? Things slowly went back to normal. My pain was moderate; the recovery itself has been more of a process than an overnight experience. I am tired often, but have the blood pressure and urine output of a normal person. I can jump, dance, go crazy with my kids, and keep up on a long walk. Allison and I laugh and hang together just like the old days.

 But I am different – forever changed. In giving, I have received the gift of becoming truly grateful. Of realizing how fragile and temporary life is. Those few days I spent on the seventh floor of Columbia Presbyterian gave me a glimpse into a world most people don’t even realize exists. A world of waiting, a place that exists where there are no simple answers or miracle cures. A world where each and every day people pray that their call will come – people with families who care, sick women, men and children from all walks of life. And what binds them is that they’re all hoping for the same thing - the chance that there is someone out there who will match, someone out there who has taken a few minutes to fill out a form. Someone who can bring life to the waiting.

Take a moment, be thankful for those heroes, and then register to DONATE LIFE!


  1. Thank you for writing this! You are a hero <3

  2. Tears. A true Hero's story.

  3. What a gift you have given your friend and she has given you. You gave the gift of life and she gave the gift of perspective to you! You really ARE a hero! Continued health and happiness to you and your friend!

  4. Awesome!! I think that applies to just about everyone in your story. Thanks for sharing the "other side." Bless you for your courage in sharing the gift of life.

  5. Wow...Jess is definitely a hero for doing what she did for her friend. It was amazing to read her perspective on transplant and what goes on in a world, as she said, many do not even know exists unless your are touched by it personally. Four years ago today I received the phone call a lot of CFers wait for....the past four years have been an absolute gift....and it was possible because of someone like Jess....ironically, my donor's name was Jessica....something about people with that name. Thank you for sharing this amazing story. <3