When I was 13 years old, I passed out in the middle of a competitive game of floor hockey in gym class. A trip to the hospital later, I’d been diagnosed with hypertrophic cardiomyopathy, a disease that often causes thickening of the heart.
Five months after that diagnosis, my mother and I were in the kitchen together. We’d been chatting as she cooked, but suddenly she said she didn’t feel well. I watched as she collapsed to the floor.
I frantically gave her CPR that I’d recently learned in a babysitting class, and as I held her in my arms, I begged her to wake up. I called 911, and then called my father at work and told him the unimaginable. The woman we loved most in the world was gone.
That night after returning home from the emergency room, now a family of two, I watched my father slide against the front door sobbing. I can’t articulate what it was like to lose my mother like that after being diagnosed with the same disease. I just know the fear of meeting that same fate was something I carried since that hot July day.
My beautiful mother was 42 when she died. I was 42 when my cardiologist told me I would die without a heart transplant.
I am a professional photographer, a passion my father introduced me to after the death of my mother. He built me a darkroom in our basement where he taught me to develop negatives and prints. I often look back at the early days in my darkroom as a way I worked through the grief of losing my mother.
I fell in love with the power of photography, and I knew documenting this time in my life would be important to me and help me process what was happening.
Oct. 14, 2022: The swan catheter was placed in my neck to monitor the heart’s function and pressures, but what I love most about this photo is the “I Voted” sticker on my hospital gown. I didn’t know how long I would be in the hospital, so I made sure to fill out my mail-in ballot.
Oct. 17, 2022: After I spent three days officially listed at status 2, my doctor told me they’d found a heart that would be a match for me. My husband gathered our boys and drove to New York City so I could hug them one last time before surgery. I remember being upset that I couldn’t actually lift my arm because of my IV, so I just buried my head between them instead.
Oct. 18, 2022: When the surgeon was ready, the nurses came to my room playing “Milkshake” and “Eye of the Tiger” on their phones. We all danced our way down to the operating room. They wished me luck as we got to the end of the hallway, where my husband, Geoff, stood next to me for a photo. I was feeling every emotion of fear, relief, grief and hope.
Oct. 19, 2022: The transplant took over 10 hours, and I woke up intubated early the next morning. Geoff took this image of me the first time he saw me with a new heart. I asked him recently what he’d thought in that moment. He said he was simply relieved to see my smile when my eyes met his.
Oct. 20, 2022: My first walk with my new heart. I had a walker and a nurse following behind me with a chair. I remember thinking, Wow, this heart is so quiet. I had become so used to feeling a loud awkward thudding, but now it was quiet and efficient.
Here’s the best way to describe how getting a heart transplant feels: It’s like if you never knew you needed glasses, and then all of a sudden you put them on. You realize:
Wait, this is how I was supposed to see?
Oct. 21, 2022: As the days marched forward in the hospital, there was so much downtime. I would listen to Brandi Carlile on repeat, and I tried to take photographs so I could document this time in my life.
Oct. 21, 2022: I felt so overwhelmed with all the changes, but photography has always been a way for me to feel grounded. It wasn’t until this day that I felt — ever so briefly — a small bit like myself again. I had been in the hospital for 11 days at this point.
Oct. 22, 2022: This was the first time I saw my new scar. I held my camera above my chest and hit the shutter button. The incision had remained bandaged up until this moment. My hands were shaking when I saw myself reflected back in the screen.
Oct. 28, 2022: I was completely overwhelmed with my new medication routine. The very patient pharmacist sat with me to go over every new prescription, what they did, and the importance of taking each one of the 14 new medications.
October 29, 2022: I had an implantable cardioverter defibrillator implanted when I was 20 because my mother died suddenly after a deadly arrhythmia. Now, at age 42, they’d removed it.
The device had saved my life multiple times. It shocked me back to life in the middle of a visit to my then 11-year-old son’s orthodontist, and another time when Geoff found me lying on the floor after I’d been grabbing clothes from the dryer.
I told my team prior to my transplant that they could keep my ICD implanted. It was part of me; it kept me safe. I will never forget what they said: “You won’t need it anymore.”
Oct. 30, 2022: I couldn’t sleep. The high doses of steroids were making the night seem unnaturally long. So I picked up my camera and created this image of my reflection in the midst of the city. I would stare at that skyline all day and night. I would track which color the Empire State Building would be. I will always remember all of those long nights looking at the beautiful buildings in New York City.
Nov. 3, 2022: After 25 days in the hospital, this was my first day at home post-transplant. Our beloved 150-pound Great Dane, Clementine, was so gentle with me. We were so happy to see each other.
April 11, 2023: I have had weekly blood draws since leaving the hospital, and sometimes more than once a week. My team monitors my tacro levels, kidney functions and white blood cells — all terms and metrics I have become aware of as they delicately balance them to keep me alive.
April 25, 2023: Medications have become standard practice, and getting used to taking them around the clock, at exactly the same times each day, has been a big part of recovery. My iPhone has multiple alarms set to make sure I never forget.
April 29, 2023: I cried often. I still cry often. It was a lifetime of change with one surgery. I often think back to a conversation I had with one of my night nurses. He told me I need to keep my eyes fixated on one step in front of me. When mountain climbers climb, they never look at the peak — it would be too overwhelming to focus on the end goal, as there are many steps, many rocks, and a lot more climbing to get through first.
I hold on tight to that idea. I can easily become paralyzed in my fear and anxiety about this experience — but when I simply say to myself, “Focus on the small step in front of you, don’t think about the top of that mountain,” it is easier.
May 14, 2023: On Mother’s Day, I always wake up with my own grief, but this year it was different. This is my 29th year without my mom here, but it’s the first year for my donor’s mother without her child here. I felt that so deeply, and it brings a heavy wave of sadness to every part of my body. I am humbled every day that a stranger gave me the greatest gift.
I spent the day with my boys. We hiked together (please reread that sentence — because I could hike!), we ate lunch on the patio of one of my favorite restaurants, and my husband took this photo of the three of us. I notice my random black and blue marks on my legs and arms, but what is most important is that I am standing with them. I am watching them grow up and sharing in their lives.
July 26, 2023: Just had my first stress test post-transplant. The doctor doing the test said that if he didn’t know I’d had a heart transplant, he never would have believed me. He said he has been with NYU since 1996 and I am only the second patient he’s seen at this high level after transplant. He asked if I’d been an athlete pre-surgery, and I laughed maniacally. So then he said my donor must have been one.
Aug. 29, 2023: We have been forever changed in beautifully heartbreaking ways. The word “grateful” doesn’t cover it, and I truly haven’t thought of a word that will ever be able to express how I feel. I just know that there is happiness in the smallest things, and what is important is how I spend the time. Every little thing is a miracle, and Geoff and I will continue to live our lives with this knowledge.
We have made a bucket list of things we want to do with these “bonus days.” Going to every MLB stadium is part of our list. So far we have made it to 14 out of 30, and four of those stadiums were just this year. On my 11-month “surgiversary,” we went to see Brandi Carlile in concert. I cried a lot. Geoff gave me tickets as a Christmas present, and I remember being so excited and so scared. “What if I can’t get up the stairs at the stadium?” I said. When he gave me the tickets, I was still unable to climb even a single step — trying to get up onto a curb required me to hold on to someone with both hands. I was still falling out of nowhere, because my knees were giving out on me. The loss of muscle tone and the extremely high dosages of prednisone created a perfect storm of weakness and atrophy.
Just weeks after my transplant, during one of my very early trips to have my weekly bloodwork, I fell flat on my face. I started sobbing. I was so tired, and so frustrated by how weak I was. It took Geoff and the security guard to get me off the floor. I was mortified, but I couldn’t stop crying.
The other part to seeing Brandi Carlile live is that I would listen to her every day and every night while I was at NYU. Most days I was alone, so her music carried me through that loneliness, uncertainty and anxiety. I would listen to “You and Me on the Rock” and think of Geoff. I would hear “This Time Tomorrow” and think of my boys. I would hear the lyrics to “That Wasn’t Me” and think of myself. Listening to her brings me right back to those early days of recovery.
I could not believe that I got to see her sing live on my 11-month heart transplant anniversary. That I confidently knew I could climb the steps to our seats. That I got to sing every word as loudly as I could.
Aug. 18, 2023: Back when MySpace was a thing, I filled out one of those quizzes about myself and posted it to my page for my friends to answer, to see how well they knew me. For the most part, everyone knew me, except for one of the answers: What would I rather do, go for a hike or go to the spa? Everyone answered spa. No one got it right, and everyone laughed at the idea when I said I would rather hike.
I totally understand why — I didn’t hike at the time, but I wanted so badly to be someone who did. I spent my entire life wanting to be that girl. On this day, however, we went hiking in the Catskills. In fact, this entire getaway was planned around being able to hike. There was a part where we walked down to the bottom of a waterfall, and the whole way down, I knew it only meant we would have to somehow get back up. There were 181 steps after a long, winding descent. In the back of my head, I was making peace with the idea that I was going to have to live at the bottom of the falls now. But, spoiler: I made it back.
I can’t believe that I could do something like that: I went on a six-mile hike and it was amazing. My 20-something self, who’d wished to be the girl who could hike, was finally that girl at 43. It makes me so emotional. None of this has been easy. I am still recovering, and truly, I will be healing the rest of my life. But to know how good this was — how absolutely amazing something as simple as a hike was for me — is simply because I have known the struggle.
Sept. 24, 2023: I walked alongside Geoff, Moses and my friends in the Heart Walk for the American Heart Association, and I shared these words with them:
I’ve been thinking a lot about this past year, and I know we all know the saying “It takes a village.” Well, I’m here to say that is extremely accurate. This has been the hardest year of my life, and I couldn’t have done it without each of you.
Maybe you sent me a card in the mail to encourage me, or left a sweet comment on social media. Perhaps you listened to my long-winded Marco Polo posts that I recorded in the middle of the night, on the treadmill. Maybe you made us a meal or texted to tell me a funny story or sent a photo of a heart-shaped leaf you found.
You probably smiled through the “Alison is on 100mg of steroids a day” stage, and pretended everything was just fine and I was an enjoyable human being. You have learned words like “tacro,” “immune suppression” and “absolute neutrophils.” You’ve followed my medicine schedule and my bloodwork days. On my big bonus days, you brought signs to my house to cheer me on and you’ve taken walks with me. You’ve asked how I was and wanted the real answer. You’ve sat in the mud with me when I was tired of trying, and didn’t attempt to pull me out until I was ready.
Each of you has had a profound impact on my life, and I need each of you to know that. I think about the idea that you all have had your own struggles and triumphs alongside of me this year. You’ve dealt with work, with personal stress, maybe your own health issues. You’ve all had piles of laundry to do and grocery shopping to get done, and yet you still took the time to be there for me. At the end of the day, there is truly nothing greater than kindness.
Simply put, the kindness of my donor and his family has given me these bonus days after all, and your kindness has carried me through the days that I just didn’t want to be an eternal patient. You have all become my chosen family.
My mom was 42 when she died of hypertrophic cardiomyopathy. She was the kindest person I have ever known. There isn’t a day that goes by that I don’t miss her.
I recently moved my father to a memory care unit, because he received an Alzheimer’s diagnosis on top of his existing vascular dementia. During a visit with him, in the midst of one of his stories, he burst out with: “Your mother is watching over you. That is how you got your heart, Alison.”
I stopped breathing for a second, and I fought so hard not to cry. He can only sometimes remember that I had a heart transplant, so this statement was so big on so many levels.
At the time of writing this, I am almost one year post-heart transplant. This year has given me some of the toughest moments of my life. I could write obsessively about how hard this has all been, how I work every single day to keep myself healthy, about the anxiety and the fear. All of that is a large part of my story, but what matters more than any of that is that I am here.
I celebrated my boys’ birthdays. I sat next to my son Moses as he bought his first car. I have taken walks with my oldest son Jonas and had the most touching conversations. I turned 43 in May ― an age I never thought I would see. I have laughed way too loudly with friends and shared adventures with my love, Geoff. We have all been changed in beautifully heartbreaking ways through this experience.
I have learned so much over the past few months. One of the biggest things is to simply be happy right now. Don’t wait for something to happen, or for things to be worked out or perfect, because let me tell you, that doesn’t exist. Everything is a miracle, and I am grateful for all of it just as it is. For the wonderful moments and for the struggles, I get to be here. I use this line a ton: Say “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 do all the things, and that change in perspective should open up a world of gratitude. Oh, and also, please sign up to be an organ donor. You never know whose life you may save.
For more information on hypertrophic cardiomyopathy, please visit 4hcm.org.
To register to be a donor, please visit donatelife.net.