Disclaimer: This story contains mentions of addiction and overdose that may be triggering to some.
“After collapsing in my home on the night of February 23, 1990, with complete heart failure, doctors told my parents I would not live to see my seventh birthday. It was my little brother (age 4) who first ran to alert my parents something was wrong when I fainted after getting home from karate class. I can still remember the searing pain I felt in my gut that caused me to pass out. I also remember coming to and being so confused as my mother shouted my name repeatedly trying to revive me on the chilly tiles of our bathroom floor. Everything happened so fast I just couldn’t understand what was going on with me.
My mother, a physician, continued to do everything she could to keep me alive as my father rushed us to the hospital. Born typically healthy with no apparent abnormalities, this was very perplexing, not just to my parents, but to all the heart specialists in New York as well. After another near-death episode in the hospital, it was decided I have an emergency pacemaker implanted before being transferred to the National Institute of Health in Maryland for further evaluation.
Realizing the severity of my circumstances, my mother placed a call to our local family priest and asked him to pray for a miracle. Looking for both answers and hope, we made the trip to Maryland as a family. After a series of tests and multiple procedures, I was finally diagnosed with hypertrophic cardiomyopathy—a difficult newfound reality to grasp and yet so much gratitude to still be alive. Growing up with a pacemaker wasn’t easy, but I still did everything I could to enjoy my childhood.
Other children would often tease, asking, ‘Aren’t pacemakers for old people?’ which caused me to conceal my illness as best I could. I was embarrassed. I also wasn’t allowed to play competitive sports and had to take special medicine three times a day. Besides this, I had my fun just like any other kid my age. I will admit there were times I wished to be athletic like the other boys. However, the majority of the time I was happy and quickly found interest in other things, like singing and playing the piano.
My pacemaker lasted 10 years before giving out to the rapid changes of my body during puberty. My heart could no longer sustain itself through all my physical changes. I was transferred back to a hospital in New York where I was told I needed a heart transplant in order to survive. Deep in my gut, I knew just how necessary this surgery was, especially given how sick I had been feeling the last few years. The reality was I was now spending more time in the hospital than not. However, as a 16-year-old, this news was especially devastating. The idea of having someone else’s organ in my body was unimaginable. It sounded like something straight out of a horror movie. I wasn’t someone who liked to share food, let alone body parts. I was absolutely terrified and found it very hard to accept this was what needed to be done in order to keep me alive. It wasn’t until receiving a visit from a healthy former heart transplant patient I began to understand this seemingly horrific surgery meant a chance at a typically healthy life.
No sooner than I had time to process all of this new information, I received my first heart transplant on March 5th, 2000, after waiting just 5 days. Receiving a heart this quickly was miraculous in and of itself. My recovery was difficult. However, with this new lease on life, it was the best I had ever felt. For the first time in my life, I felt like a healthy teenage boy free of any ailments. I traveled to Hawaii with my entire family on behalf of the Make A Wish Foundation. I graduated high school on time and with honors, despite all the time I took off for surgery. I was then admitted early decision into my dream school, Columbia University. Everything seemed to be going so well for me, and I was fully prepared to embark on what I thought would be a sickness-free journey. My doctors were so impressed with my recovery I was even asked, ‘What, are you a cat with nine lives or something?’ I really thought my issues dealing with chronic illness had come to an end—until my transplanted heart rejected after just 4 years.
My doctors did everything they could to try and save my transplanted heart without success. I spent the following 8 months in the intensive care unit waiting for my second heart transplant. I, once again, came so close to dying during this hospitalization. As the months went by, my eyes became completely sunken into my skeleton-like body, a measly 80 pounds draped in a hospital gown. My organs also started to slowly shut down, my kidneys being the first to go. Doctors even offered me the option of a second-rate heart, believing I would not survive otherwise. It is only by the grace of God I finally received another miracle on November 5, 2004. However, the damage to my kidneys remained, and I was placed on dialysis for 2 and a half years before eventually receiving a kidney transplant on December 5th, 2006. After overcoming the hurdle of dialysis, I once again found myself thinking I was done dealing with medical issues. Little did I know my medical challenges had only just begun.
On July 12th, 2010, I accidentally overdosed on pain medication. This was a result of an addiction started by my hospital stay waiting for my second heart. The overdose led to me going into respiratory failure, and it was that summer I was trached and placed on a ventilator. One of the first questions I asked before getting my trach was whether or not I would sound like a robot. I didn’t know much about trachs at the time, my only reference being those scary anti-smoking ads I had seen on TV, which were meant to depict tracheostomies in a negative light. Despite my fears of what having a trach would entail for my life, there came a point where I became so desperate for relief from the tube down my throat I was practically begging to be trached. Little did I know, my respiratory failure was the final symptom that led to my diagnosis of myofibrillar myopathy.
Shortly after my trach surgery, both my family and doctors surrounded my bedside to inform me about the rare debilitating genetic mutation responsible for initially attacking my heart at age 6. Nearly two decades later, I was finally getting answers as to why I got so sick initially. There was no treatment and no cure for my diagnosis. And because of just how new this disease was in the medical world, there was also no telling how quickly this disease would progress in my body or how long of a lifespan I would have. Initially, this was very difficult to accept, and I must say I went through periods of severe anxiety and depression. Watching my body slowly cripple over the years right before my eyes was just as devastating as it sounds. I went from using leg braces to a walker to being completely wheelchair-bound in just a few short years. Since being diagnosed with myofibrillar myopathy, I have lost the ability to walk at all, as well as most of my independence.
I now require the assistance of a 24/7 live-in caretaker who assists me with everything, from showering, going to the bathroom, getting dressed, eating, as well as driving me to all appointments. In addition, my transplanted kidney failed after 11 wonderful years, putting me back on dialysis for the last 3 and a half years. I have always found dialysis itself to be extremely challenging. The dietary/fluid restrictions and the ‘dialysis hangovers’ have worn me down considerably. However, as much as I may dislike my treatments, they are also the reason I am still alive. Therefore, I have done my very best to incorporate dialysis into my life and not let it affect my overall quality of life. Not to mention with an O-negative blood type, I have been making every attempt to get myself a second kidney transplant. Looking back, I find the mental effects of everything I have dealt with/am dealing with now are much more challenging than the physical ones. You see, once I was able to get a hold of my mind, the physical stuff didn’t matter so much anymore.
But until then, I was consumed with thoughts of being an oddity, people staring, and just appearing strange. Oftentimes, I found myself questioning my self-worth and my purpose in this world. At one point, I was so insecure I couldn’t even say out loud I was handicapped. I even wore high-collared shirts trying so hard to conceal my tracheostomy. But regardless of my superficial insecurities, I was still always genuinely happy and optimistic. Despite my positivity and resilience, life was relentless in its attempts to challenge me. In the spring of 2019, I was diagnosed with thyroid cancer and a year later, had to have the left half of my thyroid removed. Although I was told the thyroid cancer was easily treatable, this did not make the experience any less nerve-racking for me. The assumption may be having gone through so many surgeries prior, these things get easier with time. It is not true. Every procedure, whether big or small, has its anxious points. I still get nervous registering for a routine trach exchange that takes less than 20 minutes. It is perfectly okay to feel nervous.
One thing I always say is, ‘Do not let anyone else diminish how you feel about something.’ My situation holds no more weight or validation than yours. If something is a big deal to you, then that is all that matters. My only hope is people will look at my story to help put their own in perspective. I also hope to inspire others to consider becoming organ donors themselves. I do not, however, want to ever take away from whatever it is others may be going through. These are the biggest reasons why I choose to share. It wasn’t until becoming comfortable enough to share my story transparently with the rest of the world I began to not only feel like I had a purpose but also began to understand the reasoning behind everything I had gone through.
I truly believe God only gives us what we can handle, and He knew I had the power to help others. Aside from my many medical challenges, I was still just a boy growing up in the world. I dealt with many of my own devastating personal issues, including insecurity, anxiety, low self-esteem, racism, hiding my sexual identity, and a very nasty divorce between my parents.
Having overcome so much, I knew I was not alone in my struggles and many others could relate. Eventually, I decided to start putting my feelings on paper and spent the next three years purging my emotions through my writing. In November of 2015, I self-published my memoir, titled, 1 Man, 3 Hearts, 9 Lives, which is now available on Amazon/Kindle. I told myself if I was going to share my story, I was going to be totally vulnerable and transparent, and so this is exactly what I did. Up until this point, I had suffered tremendously but from it all, but I also learned so much and have grown considerably.
I am still very much a work in progress to this day. It has not been easy to let go of my independence, and surely I have my bad days just like everybody else. I am human. In fact, I am a very big advocate for feeling and expressing your emotions. I let myself be sad and angry when I need to. We all have a process. I’m also very fortunate to have the incredible support system I do. Oftentimes, I am asked how I remain so positive, and one of the reasons is because I’m surrounded by such motivating and supportive people.
One thing I cannot say is I am not loved. I also make sure to engage and participate in things I enjoy and things that make me happy, like watching funny movies, listening to music, having my siblings over, going to dinner with friends, flying model airplanes with my uncle, and cuddling with my dog. Life is all about perspective and the way you choose to view things. While I very much let myself feel things when I need to, I also make the effort to pick myself back up after a certain amount of time. It’s not always easy, and this is why I say we must dig deep to find our inner strength. We are so much stronger than we realize. If I were to tell 16-year-old me who was so terrified of getting his first of two transplants about all the trials to come, he would say there is no shot in hell he was surviving any of it. And so, believe me when I tell you anything is possible. Despite doctors giving me a death sentence of fewer than 6 months at age 6, 30 years later I am alive and thriving.
My hope is anyone reading my story who is struggling, whether it be medically, financially, sexually, relationship-wise, or just anything in general, will be inspired to keep on fighting and never give up. Trust me when I tell you despite my physical weakness, I am spiritually and mentally the strongest I have ever been. My mind and everlasting faith are what have kept me alive to this day. My faith has always been a strong part of my identity. Religion was always present in my household and throughout my life. We attended weekly mass as a family, and I went to Catholic school my whole life. I also had the honor of being blessed by Pope John Paul II on October 5th, 1997.
It would now be an appropriate time to point out each of my three transplants took place on the 5th of the month. For me, this is no coincidence. God has always been present in my life and has shown me signs to affirm this. Without God and my faith, I would not be alive today. Faith is a personal journey to which everyone is entitled, free of judgment. I respect everyone’s right to believe what they’d like. I just personally have witnessed the magnitude of God’s power in a way I cannot deny.
I believe life is about spiritual growth and enhancement. We’re here to learn lessons and be better. As mentioned in a conversation with my caretaker, life is a transitory state. We are but merely spiritual beings traveling in physical vessels, and I believe there is so much more to come beyond this life. I am often asked what advice I would give to the youth of today, and I would say in a world led by social media and technology, do not get caught up in the superficial. Do not waste your valuable years worrying about what other people think. You are incredible just the way you are and deserve to live your life in the way that makes you happy. As long as you are not home harming others or engaging in illegal activity, do what makes you happy. Go after your goals and pursue your dreams, because nothing is impossible. Again, this is coming from the little boy who was told he would not see 7 years old who is now turning 38. Don’t take things for granted, because life has a funny way of reminding you of what’s important when you need it most. And sometimes when you finally decide to appreciate something, it’s already too late.
I would give anything to go back in time and live my life authentically. To love who I wanted to love, pursue a career in creative arts and graphic design, travel more, and not get so caught up in the day-to-day. All my worrying never got me anywhere. Trust me when I say, it’s just not worth the time and energy wasted. I’ve experienced being very wealthy as well as being so financially strapped and wondering how I will pay for all my extensive medical needs. I’ve experienced the best of friends, and have also lost so many to tragedy, time, and petty nonsense. Life has its challenges for all of us. Each one of us is on our own individual journey with its own individual cracks in the road. I’m just trying to do my part to help you realize the road is worth being traveled. Life can be beautiful, you just have to know where to look. Ultimately, I’m just a person doing my best to be better. I will forever be grateful to my selfless angel donors who have afforded me the ability to still be here to share my story.”
This story was submitted to Love What Matters by Christophe Lafontant of Norwood, New Jersey. You can follow his journey on Instagram, Facebook, TikTok, Twitter, and his website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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