"Alison, you are going to die if you do not get a heart transplant,"
my cardiologist said to me while I sat uncomfortably on the crinkly paper in his office. I looked down at my legs and took a breath. I remember thinking there is no way this is actually true. This isn’t what death looks like? Or feels like? I caught a glimpse of myself in the reflection of the art on the wall. Surely, he has to be wrong. I looked over at my husband, Geoff, who was sitting to my right; he looked horrified. We both stared at each other and I wondered what he was thinking. “Are you sure?” I heard myself ask. “How much time do I have?” I zoned out as my beloved cardiologist of almost two decades talked about levels, test results and complete heart failure but I didn’t miss it when he said: “We’re talking six months.”
We did what anyone who gets this sort of diagnosis does next. We followed the appointment by going to an Alanis Morissette concert that night. They were tickets we had for over three years, and finally, after a global pandemic and torrential rain had continued to push the concert back, we would experience it. I sang along with every word and buried all of the news to the back burner. Call it denial. I’ll call it survival.
The next day, our beloved Great Dane, Ringo, died suddenly. We had learned about his heart condition less than a month earlier and without warning on a normal Friday afternoon he was gone. That weekend we didn’t get out of bed. I didn’t do anything but cry and sleep. When Geoff and I finally got to a place where we had the strength to talk, we decided that I needed to do everything I could to try to get a heart transplant. So, I texted my cardiologist and told him I would start the listing process.
42
You have to understand that I always believed I was going to die at 42.
This may seem like a crazy statement, but when I was 14 years old, my mother died at the age of 42 of the genetic heart condition hypertrophic cardiomyopathy. Five months before her death, when I was 13 years old, I was diagnosed with the same genetic heart condition.
She died in the kitchen of my childhood home. We had been chatting while she was cooking when she suddenly said she didn’t feel well. I watched as she collapsed to the floor. I frantically gave her CPR that I had recently learned in a babysitting class and, as I held her in my arms, I begged her to wake up. I called 911 and my father, who was at work, to tell him the unimaginable. The woman we loved the most in the world was gone. That night after returning home from the emergency room, now as a family of two, I watched as my father slid against the front door sobbing.
I can’t articulate what it was like to lose my mother that way after being diagnosed with the same disease. I just know that the fear of having that same fate was something I carried since that hot July day. The number 42 has followed me around throughout the past 29 years—I always seem to grab the 42nd ticket when I am at the deli counter, when I walked the Turkey Trot 5K my bib was number 42, when I moved my father to an assisted living home his room number had 42 in it.
I was 42 years old when I was given this news of needing a heart transplant. For so many years, I looked at it like a curse, but then I started to see it as signs from my mother. I have always believed she is watching out for me.
The Power of Photography
While most kids my age were excited to start high school, I was suddenly a kid who had a team of cardiologists and specialists. I felt lost in my grief. My father, who was now a single parent to a teenage girl, taught me how to develop film and enlarge prints in a darkroom he built for me. I had become obsessed with the candid photos he and my mother had taken of me and of themselves. I used many of them for the photo wall I was put in charge of at her funeral. There were photographs they had taken that I had never seen before and that were now my most prized possessions. I used my mother’s camera as a way to navigate my sadness and I fell in love with photography and how powerful it is. I would eventually shoot my very first wedding at the age of 18.
A Match
On October 10, 2022, I was admitted to NYU Langone hospital to complete the listing process and wait for a heart. I packed my suitcase with the knowledge that I may be there a long time. My hope was to at least be home by Christmas if not Thanksgiving but, truly, I had no idea what to expect. I had a septal myectomy via open heart surgery five years earlier and multiple other heart surgeries, so I figured I would have a handle on whatever was headed my way. (Spoiler alert: I couldn’t have been more wrong.) After about one week of completing the tests, I was officially listed at Status 2 on the transplant list. The days were long in the hospital. I would walk the halls to stay as active as I could and sometimes I would chat with other patients who were also waiting. I made friends with the nursing staff (they were amazing) and three days later on one of my laps around the unit, a doctor came up to me and asked if we could talk. Not thinking for a second it was about a heart, I sat down on my hospital bed and he sat across from me. Out came the words:
"We have a heart we believe will be a perfect match for you, Alison."
Boy Mom
It had been three days since my name was on the list and, suddenly, I was being prepped for surgery. I called my husband and he gathered the kids and drove to New York City so I could hug everyone one more time. I am a mother of two boys, both of whom are adults now—even if I will always see them as my babies. When I was told my donor was a man in his 30s, the very first thought I had was of how he was someone’s son. I was inconsolable. There is such complete gratitude for this amazing gift of a second chance, but it comes with the knowledge of how tragic it all is.
When the surgical team was ready, the entire nursing staff stood outside of my door playing the song “Milkshake.” With the words “my milkshake brings all the boys to the yard” playing, we danced our way right into the operating room. Then, of course, from Rocky, “Eye of the Tiger.” As I lay on the table watching everyone run around and get ready, I started to feel completely overwhelmed. I closed my eyes and thought of my husband and my boys. I let myself imagine for a minute what my life may look like if I survived this transplant—being able to walk without being out of breath, being able to take the stairs, and simply being able to live. The anesthesiologist counted me down as I talked about photography and our shared love of Fujifilm, and the next thing I knew, I was awake, intubated and in the ICU. The surgery had lasted overnight, taking over 10 hours to complete.
New Life
I could write obsessively about how hard this has all been, how I work every day to keep myself healthy, about the anxiety and the fear. I could talk about taking handfuls of life-saving medications every day on a strict schedule, multiple times a day for the rest of my life. At the time I am writing this, I am getting ready for my eleventh heart biopsy and right side catheterization at the hospital in a few days. All of that is a large part of my story, and it is not easy, but what matters more than any of it is that I am here.
I celebrated my boys’ birthdays. I sat next to my son Moses as he bought his first car. We have gone hiking together as a family (and please reread that sentence because I could actually hike for the first time). I have taken walks with my oldest son Jonas and had the most touching conversations.
I turned 43 in May.
I have laughed way too loudly with friends and have shared adventures with my love, Geoff. I have learned so much over the past few months. We have all been changed in beautifully heartbreaking ways through this experience. One of the biggest things is to simply be happy right now. Don’t wait for this to happen or for things to be worked out or perfect—because let me tell you, that doesn’t exist. Celebrate now. Everything is a miracle and I am grateful for all of it just as it is. For the amazing moments and for the struggles, I get to be here.
One thing I like to say is “I get to” rather than “I have to.” If there is one thing you take away from reading this, please let it be that. You get to grocery shop. You get to fold and put away the clothing of your loved ones. You get to take your dog for a walk. You get to go out to dinner with your in-laws.
You get to do all the wonderful and not-so-wonderful things in life and that change in perspective should open up a world of gratitude.
Oh, and the final takeaway, please be an organ donor. You never know whose life you may save.
4hcm.org | donatelife.net | hello@alisonconklin.com | Instagram
Published as “I Get To by Alison Conklin” in the August 2023 edition of Lehigh Valley Style magazine.
