By Mark Calkins
My heart disease journey started when I was 10 years old. I was in the school gym one day and blacked out. I was taken to the nurse’s office, and it just happened that a doctor was there doing school physicals.
Fortunately, he listened to my heartbeat and heard the defect that had escaped other examinations. Two weeks later, I was in Rochester, New York, having my first open-heart surgery. They found I had been born with aortic stenosis, a narrowing of the aortic valve opening, or a failing heart valve. It had taken ten years for the opening to narrow enough to cause a problem.
The surgery widened my valve to help me get through my growth spurt years. But being a very active child, I hated the restrictions this put on me. I was not able to play the sports I wanted, and many times just didn’t have the energy to keep up with the other kids.
When I was 18, it was time to replace the valve. I had my second open-heart surgery, and they replaced my aorta with a pig valve. This lasted for about seven years.
By my mid-twenties I had moved to Maine, and I started having complications with the valve, since I had outgrown it. Dealing with symptoms of fatigue, atrial fibrillation, and both atrial and ventricular tachycardia, it was time again for replacement.
In 1992, after meeting with the head surgeon at Maine Medical Center, he recommended the Ross Switch procedure. The Ross procedure, also known as the switch procedure or pulmonary autograft procedure, is a cardiac surgery in which a diseased aortic valve is replaced with the patient’s own pulmonary valve. This is followed by the replacement of the pulmonary valve with a pulmonary allograft. This was a very new procedure at the time and the head surgeon at Maine Med and the lead surgeon from a major Connecticut hospital had been to Europe to study it. I would be the first patient they had performed it on, and the first patient to ever have this procedure in New England. So, the Connecticut surgeon flew up and they worked together to perform a successful operation.
Once again, I was in good shape for a while, but after five or six years I started dealing with several electrical issues including A-Fib and atrial flutter. I was sent to Brigham’s and Women’s Hospital in Boston twice for ablations and finally had an ICD implanted to regulate my heartbeat.
This added a new element to my heart life as I am a community actor and had my ICD fire off, causing me to collapse several times while on stage in front of audiences. The most memorable experience was while I was playing a drag queen in “La Cage Aux Folle” and it happened right after the can-can. I was rushed to Maine Medical Center in full drag and passed out on the way there.
By the time I arrived, I was coherent and it became comical as I had nurses peeling off my fake eyelashes, washing off makeup and cutting off my dance tights. The doctors had no idea what to make of the situation. I spent the night in the hospital and was back on stage the next night. My passion for the stage and acting would not let these setbacks stop me. However, I was fearful every time I walked on stage.
Many times, my ICD kicked in during my very active lifestyle. However, when they implanted my ICD, they were unable to get a fourth wire into the left side due to a very rare defect in the middle of my heart. My pacer was now pacing me almost 100% of the time and the right side of my heart doing all the work was growing weaker.
In the summer of 2021, I was sent to Washington, D.C. to a surgeon known for being one of the best for getting the fourth wire implanted. After struggling himself, he found a creative solution and succeeded in implanting the wire. According to my doctors in Maine, moments after my procedure he was posting his success on medical websites so that other surgeons dealing with this issue could try the same trick. But despite this amazing intervention, the right side of my heart continued to weaken.
After more ventricular tachycardia attacks and several hospital stays to drain fluid that was accumulating because my heart was not working properly, I was listed at Tufts Medical Center in Boston for a heart transplant. I spent two years listed as a Status 6 patient—the entry point for patients listed on the registry.
There are six levels with six being the lowest and one being the highest. Generally, it is the patients at level 1 and 2 that are hospitalized needing mechanical assistance and receive the hearts. You can, however, receive a heart at any level if the heart is a perfect match for you.
At this time one of my Maine doctors mentioned that I should try getting listed at Massachusetts General Hospital (MGH) as well. After going through the listing process all over again, in the Fall of 2023, MGH offered me a listing. My heart led me in that direction, and I made the switch from Tufts to MGH. In December 2023, I spent a month at MGH having nearly all of my antibodies removed. This now moved me up to status four with hopes I could move to status two and stay there until transplant. I was unable to stay, though, so they sent me home just prior to Christmas.
On January 6, 2024, I got the call that MGH had a heart for me. I am now almost four months post-transplant and have had some time to reflect on my life of battling heart disease on many different levels.
I have been on a long journey from valve problems to electrical issues, implanted devices, then groundbreaking surgeries with innovative surgeons. I have struggled with coronary artery disease, ablations, tachycardias and the complexities that come with each, then progressing to acute congestive heart failure and transplant. Through all these challenges, I have made it a goal to not let my heart problems dictate how I live, even though they have always played a major role in my day-to-day life.
Now with a new heart, I face a whole new set of challenges, ranging from the higher risk of skin cancer and osteoporosis as well as kidney failure due to the post-transplant medication. I always worry about people around me being sick and transmitting germs. But I will continue to warrior on and take one hurdle at a time. Heart disease at any stage presents different problems but I am living proof it can be beaten, with attentive doctors and innovative solutions. Now, for the first time since I was 10 years old, I have had all physical restrictions lifted from me.
My heart journey has been long and as many of my doctors have said, I did not do things the easy way and I was always presenting them with new challenges. After 47 years, I am finally a survivor of heart disease and I thank my donor every single morning for the very generous gift of life.