BLESSINGS - An Adult CHD Journey

By Kyle Bovee

It's 5 am in late December 2012. I'm 31 years old and I'm standing, huddled with my family, too nervous to sit. I can't carry the conversation, but instead stare closely at the people who I love so dearly, memorizing their faces. I'm in a pre-operative, or pre-op, waiting room at the Mayo Clinic. The day I have feared the most, for as long as I remember, is here. Today is the day I will undergo the Bentall procedure during open heart surgery to repair my ailing heart. 

I hear my name called, it's time. 

I want to flee, but the problem is inside of me and I can't outrun it. Instead, I hug each family member and will myself to smile instead of cry. The only thing I remember saying is, "It will be ok." I turn on rubbery, weak legs and walk toward my fate. Aware that my life is now in the hands of God. In my 31 years of life, this is my toughest, scariest moment. 

Minutes later, I'm lying on a stretcher in the pre-op surgical bay when a strange thing happens. At this most fearful of moments, I'm inexplicably filled with a sense of peace and inner strength. All fear is gone, my breathing slows and relaxes. For the first time in days, I know that it will be ok. My thoughts turn to all the moments that delivered me to this place. Understanding fills me, my life has been one big blessing. 

The surgeon walks in, "Are you ready?" he asks.

 "Yes," I replied. 

________________________

I was born in Concord, Massachusetts in the early 80's. During a pediatric appointment, doctors heard a heart murmur and I was referred to a pediatric cardiologist at Massachusetts General Hospital. Upon further testing, I was diagnosed with bicuspid aortic valve stenosis. This was the start of a nearly 12 year relationship with my first heart doctor. Decades of clinical experience had given him the wisdom and skill to counsel young patients and their parents. In his office was a giant cork board filled with the young faces of all his patients. As he discussed my medical fate with my parents, I would find myself staring at those pictures. Out there were kids just like me. Their smiling faces gave me hope. 

My early life looked much like any other kid. I loved sports, particularly baseball. The Red Sox were my team. The superstitious "curse of the bambino," a seemingly insurmountable force keeping them from reaching their goal of winning the World Series, was something I identified with – it symbolized the battle I was fighting within. Having a congenital heart defect means medical appointments and testing are an established part of my reality. As I aged, these tests served as tangible reminders that I was different from my peers. I was taught to monitor myself for signs and symptoms of decline. Each year, a few weeks before my annual appointments, I would feel anxious and uncertain. Was I having symptoms? Was this the year I would need surgery or be told to stop playing sports? I didn't know how to process these emotions or even what questions to ask. 

During the early years, my parents were my rock and we tackled each appointment and test together. They were masters of distraction and kept the mood light, finding ways to make me laugh. While waiting on the cardiologist, we would venture into downtown Boston, to enjoy bowls of New England Clam Chowder. It was a ritual we all looked forward to in this stressful time. Most importantly, their calm and steady demeanor gave me the confident understanding that we could get through anything together.  Now, as a parent myself, I can only imagine their concern and remain in grateful awe of the manner in which they handled these appointments.  

After an exploratory heart catheterization at age 10, I had an understanding that time, and how we spend it, was a gift. I set goals and held myself to high standards. For instance, for weeks in 5th grade, I had a self-imposed rule to only allow myself a snack once I made 100 shots on our basketball hoop. While pitching a baseball against a brick wall, I imagined myself pitching for my beloved Red Sox, knowing they were relying on me to be at my best. These challenges were rehearsals. Intuitively, I knew that one day I would be tested and that I would need to be tough.

As middle school came to an end, so did my competitive baseball career. My cardiologist advised sports that required intensive training, heavy weight lifting, and contact were not in my best interest. I gravitated toward activities that felt good to me and, more importantly, allowed me to dictate the level of activity and rest. I surfed, played tennis and golf, and enjoyed other hobbies as I navigated high school. I don't remember feeling envious of peers without limitations. In my mind, there was a clock ticking continuously down to the day I would have to face my biggest fear.  

At age 18, doctors did another exploratory heart catheterization. This allowed them to gain a truer picture of the state of my aortic valve. Thankfully, no further intervention was needed. Underlying anxiety and concern remained masked in teenage bravado. I yearned to test my limits, to push myself. I was inspired by daring and courageous stories from soldiers and athletes I admired. Frustrated that my condition disqualified me from the lifestyle I longed for. The clock ticked on.   

In my twenties the years were marked by making it through the annual appointments of tests, echocardiograms and EKGs which measured the function of my heart. I pursued a degree in health science. Health is a precious gift, perhaps only realized when threatened. And at times, mine felt threatened. Soon after completing college, I met my wife. We shared a sense of purpose and excitement for the future. Early in our relationship, we would spend hours planning all the things we wanted from life. The clock ticked on.

As "my" story became "our" story, I was fortunate to attend graduate school at the University of North Florida to pursue an advanced degree in physical therapy. My brother was injured in high school football. As the younger brother, I tagged along to his after school PT sessions and recognized it as a place for teaching others to overcome their challenges. To make the most of hard situations. This resonated with me and unknowingly at the time, set the course for what would become my career. The clock ticked on.

I'm approaching 30 years old. I've completed my graduate studies in physical therapy and am one year into a new career. Ally and I recently purchased our first home and are caught up in the excitement of the birth of our first child, Colin. Distracted by all this activity, early symptoms manifested in subtle ways as I quietly dismissed any hint of trouble. What first time parent isn't exhausted in those first few months?  I rationalized the overwhelming fatigue and inability to recover from activity as a natural response to a new job and all the other life changes we were navigating. 

That year I walked into my annual appointment, now being followed by the Mayo Clinic, a few weeks before Christmas. My gait lacked my usual confidence. A gnawing anxiety clouded my enjoyment of the season. This time, the cadence of the appointment felt different. The cardiac sonographer seemed to linger a little longer, taking pictures of my heart from every angle. The doctor seemed more focussed on my results, the room a little quieter. How was I "really feeling", she asked. The time had come, the clock had stopped. 

I learned my heart had developed an aneurysm on the aortic root and the ascending aorta. In combination with the stenosis, my heart was in trouble. When I was told I needed surgery, and soon, the years of worry rushed to the surface. My emotions swelled and I felt the fear of that little boy all those years ago. There would be no more rehearsals. My test had come, I had to be tough. 

The next few days were marked by advanced testing, meeting with the surgeons and more testing. I felt apart from myself. Forces pulled me toward the thing I feared the most. My wife and I lived minute by minute. I wrote a letter to my son. I called my family and told them I loved them. I went to the beach and breathed in the fresh air, visualizing it to be the breath of God. 

I found myself leaning into my thoughts, into prayer. I prayed for the strength to approach surgery with the resolve and courage of my childhood idols. But despite my best pep talks, the future felt so tenuous.  

Isaiah 41:10 became the rock to rest my mind on, "So do no fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." I wrote this on a small piece of paper and carried it in my pocket everywhere I went. These words were a sacred promise. 

The tests were now done and tomorrow was the day. My brother sent me a message – "Tomorrow, when you wake up from surgery, your heart will be fixed for the first time in your life!" His optimism provided a vision for my future that was hard for me to imagine. Sleep did not come easy that night. Instead, Ally and I huddled on the couch and watched movies. We held each other and talked, trying to keep the dawn at bay.

_____________________

I am awake. I hear the business of the nurses. I hear my family. 

Realization hits, I'm alive! A new clock begins to tick. 

The early days of recovery were difficult for me. The side effects of the anesthesia remained with me for several days. Nausea and a strange inability to sleep made it hard to get the necessary nutrition and rest to start rebuilding my stamina. It was humbling to mark progress by the amount of feet I walked that day or the time spent sitting up in a chair.  While I was grateful to be past the surgery, I'd be lying if I said I felt confident in my recovery. I set one goal – "get back home." Again, my family shined during these difficult days, tirelessly keeping my spirits up. 

Seven days after surgery, I met my goal. I went home on Christmas day. A day that for many is filled with hope, joy, tradition, and a little mystery. Fittingly, I walked through my front door a changed man. The fresh surgical wounds would heal and the scars would tell a story. On the inside, I was changed forever, in ways I would only discover in the years ahead.

My new clock ticks on. It's been more than a decade since I came home that Christmas day. I returned to my work as a physical therapist, motivated to help others overcome challenges and difficult situations.  I've witnessed the birth of my daughter and enjoy watching her and my son grow. I'm about to celebrate 20 years of marriage to my beautiful wife. The blessings too many to name.    

The cardiovascular surgeons, doctors, nurses, and support teams did their job. What they did for me is nothing short of miraculous. The rest is up to me. To make the most of this miraculous gift.

Last year, I wrote to my surgeon and cardiologist. How do you thank people that have impacted your life in such a profound way? I spoke of my gratitude and shared pictures of my family. Their humble response only highlighted the miraculous work of all of those who dedicate their profession to helping children and families with CHD:

"Thank you for reaching out with those kind words and sharing pictures of your beautiful family. It has been a privilege to be a part of your health care journey, and I am proud of the life you lead."