I was a Division 1 college hockey player at Boston College in 1993 during my freshman year when I was diagnosed with Hypertrophic Cardiomyopathy (HCM). I was a highly touted recruit; ranked the #9 best goalie prospect for the 1993 NHL Entry Draft. I was the highest American goalie listed. I was very active, healthy, and showed no signs of slowing down. I had no issues participating in practices, training sessions, or games. By all counts, I was in top physical shape.
However, just days prior to the first game of the year at BC, a scrimmage against the ’94 US Olympic team, my world came to a screeching halt. During a routine physical, the doctor detected a heart murmur, something that I had already known I had growing up. However, this diagnosis occurred just months after Reggie Lewis of the Boston Celtics collapsed and passed away during a practice. Only a few years earlier a college basketball star, Hank Gathers (Loyola Marymount University), collapsed and passed away during a game. Athletes and heart conditions were a hot topic in the news. Coincidentally, both were also diagnosed with HCM. As a precaution, I was sent to St. Elizabeth’s Hospital in Brighton, MA for further evaluation. After several tests and anxious hours waiting, the diagnosis was HCM. Immediately upon hearing those words, I was forced to ‘retire’ from the game I loved. I was rising to the pinnacle of my craft and in top physical shape. However, more than likely, and much to my dismay at the time, those doctors and that diagnosis very well saved my life.
For my family and me, HCM is personal. It is genetic. HCM took the life of my father ten years earlier in 1983. I had inherited HCM from my father. The gene lay dormant for the first 19 years of my life. My father’s brother, my uncle, was also diagnosed with HCM years after I was. Out of the five siblings in my father’s family, two had HCM. I have one older brother who does not have HCM. Statistically, there is a 50/50 chance of passing down the gene. This held true for my family as well.
I lived life symptom free for about the next ten years. In 2000, as a proactive precaution, I had an implantable cardioverter defibrillator (ICD) inserted into my left chest/shoulder area. My cardiologist warned me that sooner rather than later I would need such a device. He was not wrong. I slowly noticed symptoms appearing like shortness of breath and fatigue. Being a prideful guy, I merely brushed these flags for heart failure as symptoms of everyday life. I was working. I adopted a new puppy. I was a ‘normal,’ active person in society. In hindsight, I was naïve. However, between 2007 and 2010, my HCM began to progress and accelerate. My ICD began to fire with regularity. I was hospitalized on a number of occasions. I suffered approximately 20 shocks in all. Some were deemed appropriate, or necessary, while some were inappropriate, or misfires. Evidently, heart failure was clear to most but not yet to me. I still had too much competitive spirit in me. I was in denial. As long as I was walking my dogs (I had two now) and working full time, I was not sick enough for heart failure. To me, heart failure equated death and I was not dead. I felt that I still had plenty of strength and life left in me. I only knew how I felt. I did not realize that my ‘normal’ was being sick. In 2010, suddenly conversations with my cardiologist at New England Baptist Hospital regarding a heart transplant changed from ‘if’ to ‘when.’ I was soon referred to Dr. Marty Maron and the HCM Center for Excellence at Tufts Medical Center.
After medicine changes and some tweaking to the settings of my ICD, I pressed on and continued to work. With my competitive nature, I struggled but pushed on, trying not to lead anyone to think that I was battling to keep up physically. I began the transplant evaluation process in late 2011. Fortunately, I was listed a short time later on February 22, 2012. At that point, I was fighting to walk very short distances. Once a world-class athlete, I struggled to climb one flight of stairs. I finally admitted to my wife, my nurses, and my doctors that I was sick and was suffering from end stage heart failure. For me, it only took being put on a heart transplant wait list to acknowledge it.
Due to my HCM and its progression, I was not a candidate for a ventricular assist device (VAD), a heart pump. Instead, I was placed on a type of medicine called an inhibitor, milrinone. This is a medicine that helps the heart contract more easily. It eases the pressures in the heart and helps the heart pump with more efficiency. I received milrinone intravenously via a peripherally inserted central catheter, or a PICC line. The PICC was inserted into my right bicep. This medication worked well for me for a limited time, it gave me ‘strength’. I was able to live at home and climb stairs again. I was able to walk my dogs again. I was able to help with chores around the house. I had to be aware of the PICC line, and not pull, tug, or get the catheter caught on anything. Unfortunately, I was no longer able to drive. Some effects of milrinone are fainting or arrhythmias and I could not take that risk. I was willing to trade no driving for quality of life at home with my dogs. But after seven months, the end of 2012, even with increased doses of milrinone, it became obvious that I was again suffering from end stage heart failure and had to be hospitalized.
I agreed to move into Tufts Medical Center but I wanted to do so on my terms. Before I packed my bags, I wanted to watch the Super Bowl with my family on the upcoming Sunday and I wanted to attend, in person, the first round of The Beanpot. The Beanpot is a college hockey tournament in Boston. It is a four-team (Boston College, Boston University, Harvard University, Northeastern University) tournament played every year at the Garden since 1952 and it is for the bragging rights of the city for not only the teams but for the respective alumni across the world. My transplant coordinators at Tufts Medical Center thankfully agreed. After each of the games passed, I walked through the hospital doors and I was admitted to Tufts Medical Center on February 6, 2013. At that time, I was the 9th ‘long termer’ living on the floor out of 14 beds. We were all awaiting new hearts. I ‘lived’ at Tufts Medical Center for over 6 ½ months.
Since I was not a candidate for a VAD, I was “Swanned.” Every week I had a Swan-Ganz right heart thin catheter (Swan) inserted into either my left or right internal jugular (IJ) in my neck. It alternated week to week. The catheter passed down into the right side of the heart where the doctors and nurses could monitor my heart’s daily function and blood flow. Once Swanned, I was only able to get out of bed and move between my bed and a chair that was located next to my bed. The Swan was connected to a monitor above my bed and I was tethered to the monitor by an approximate 8’ cord. This 8’ cord provided my moving radius. The Swan would remain in my neck for six days in a row. I would sleep with it, wash with it (no showers,) shave with it, and eat with it while it remained in my jugular. On the 7th day, the Swan would be removed at bedside. This was my one day per week that I was able to walk the hallway, take a shower, be social with other patients. The next day I would return to the CardioVascular Center (CVC) in Tufts Medical Center MC to have another Swan inserted into the other side of the neck.
The time with a Swan in my neck extended from 7 days to 13 days as the weeks progressed in an effort to prevent infection at the insertion site. Living on the 8’ tether, I was only showering every 13 days now (the nurses and my guests loved this). My neck became more sore, and because I was moving less, what muscles I had remaining in my legs were now atrophying faster. So when my ‘Swaliday’ (Swan Holiday) came around, I did not stop walking and socializing. I legitimately walked miles in the hallway of Pratt 8 all day at Tufts Medical Center. I knew that the better I could set myself up for success and a positive outcome while at Tufts Medical Center could only benefit me once I got home.
During my 6 1/2 month stay, I met some remarkable people on the floor between the patients (heart brothers and sisters), families, nurses, techs, doctors. There was a camaraderie and an unspoken bond that no one would go through the process alone; everyone was a resource. Whether it was a family member or the patient, everyone was rooting for each other and checking in on each other to make sure both family and patient remained strong and in good spirits. Everyone was extended family now. There was no competitiveness. Each person was genuinely cheering for each other to get that heart and live life again. As the months passed, one person received the gift of a new heart, then another, then another two patients. I witnessed friends and their families go through this transformation from needing a heart to recovering from surgery to thriving again back in the real world. That process was amazing to watch and it was amazing to see my friends come back for follow up appointments and ‘meet’ them all over again as this new, active, live person who is back out in society. It is mind blowing to not only witness it but to now experience it.
I was transplanted on August 22, 2013, exactly 18 months to the day that I was put on the transplant wait list. I was discharged on September 3, 2013, day 210 at Tufts Medical Center. After my transplant surgery, life has been remarkable. I have been given a brand new slate at 40 years old. Yes, there are many follow up appointments and there is a strict regimen of pills and medicines that you must adhere to. However, as far as I am concerned, I’ll take my pills and visit the nurses and doctors who gave me a second life. I stayed in the hospital for 12 days post transplant. There was talk of possibly going home on the 8th day. I decided against that only for the reason that I would have gone home the Friday before Labor Day weekend. If something went wrong, or I did not feel quite right, I did not want to go back to Tufts Medical Center during a long weekend. I was at Tufts Medical Center almost seven months at that point. I asked myself, how bad would another three or four days be? I stayed. The nurses, techs, and I had a fun last weekend together.
Since that time, life has been a whirlwind of fun. I traveled to Cape Cod less than two weeks later for a weekend once my incisions healed a bit more. Yes, there have been some obstacles to get over. There are weekly, then monthly biopsies. There are blood draws. Yes, there is some juggling and balancing of medicines in order to get to the ideal levels of oxygen, potassium, white cells, etc. And yes, initially, there is soreness at the incision sight. Every day after I got home, I walked. I tried to walk at least two miles per day. It was aggressive but I was not speed walking either. I casually walked enjoying the fresh air, enjoying the background sounds that I forgot even existed when I was tethered in my room. As the weeks went by on the calendar, I would change up the walking pace. Some days I would walk shorter distances but pick up the speed. It felt so good to be out of breath for just being out of shape and not being in end stage heart failure. I approached every day as a test. I tested myself physically but listened to my body.
I recalled my days of training for hockey and recounted exercises and drills that I could modify for my current situation. I walked, I speed walked, I skipped. I walked up hills. I walked down hills backwards. I cautiously pushed myself. I am fortunate enough to have little to no rejection or infection so that I can boil my competitive juices again. Six months post transplant, I was back on the ice! I was helping to coach my seven-year-old nephews’ hockey team. As Spring and Summer came around, I went back to work part time doing administrative work. I coached a summer hockey team. I play golf again, using a cart. I ride bikes. I hike mountains. I kayak in the ocean. I run. I have not felt this good, this strong, or limitless since I was in high school. However, I am not reckless. Since being discharged from Tufts Medical Center 13 months ago, I listen to my body every day. Everyone is different. Everyone will respond differently. If I try something and it doesn’t feel right, I stop. Just as the heart transplant process was a journey, so is life. Both are marathons, not sprints; but you have to enjoy the journey.
I look at life, and live life, differently now. I do not have any weird cravings. I do not desire something that I did not like previously. I am not any smarter than I once was. But I have perspective, which is different than knowledge. Both can be equal or better than the other given the circumstance at hand. I have a new outlook on life, on my life, and my relationships with family, friends, and strangers. Don’t get me wrong. Days are not filled with rainbows and unicorns. I still get frustrated when I drive in traffic only to find out there was a phantom reason all along. But it is a different frustration. I simply remind myself that there was a long period of time that I wanted to be stuck outside in traffic because it was better than the alternative that I was experiencing at that moment.
Much like my journey to transplant and now my journey through life, I cannot do it alone. I needed help then and I will continue to always need help. One of the things I began to follow since transplant, to try and learn and enjoy something new, is English Premier Soccer. One of the teams in the league, the Liverpool Reds, has an organization motto “You’ll never walk alone.” This motto resonated with me, and is the sole reason for Liverpool now being my favorite English Premier team. The motto’s message runs parallel to the HeartBrothers’ mission. HeartBrothers exists so that you do not go through the process alone. I have walked in your shoes. I ate three hospital meals every day. The commode was not my friend either. I have been tethered to a monitor by an 8’ cord.
“You’ll never walk alone” was adopted by Liverpool from the song of the same name written by Richard Rodgers and Oscar Hammerstein for their musical Carousel in 1945.
YOU’LL NEVER WALK ALONE
When you walk through a storm, hold your head up high
And don’t be afraid of the dark
At the end of the storm, there’s a golden sky
And the sweet, silver song of a lark
Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on, walk on
With hope in your heart
And you’ll never walk alone
You’ll never walk alone
Walk on, walk on
With hope in your heart
And you’ll never walk alone
You’ll never walk alone