Sometime between what would have been my son’s 40th birthday and the anniversary of his death, I began to experience symptoms of a heart problem.
I had just biked up a 3-kilometer steep road on the countryside of Alsace France, breathing hard but determined to reach the top of the hill before I took a break. At what I hoped was the crest of the hill, I was greeted by my husband who was checking the map to see where we went from here. We had biked up and down steep rolling hills all morning, chatting along the way with sheep and white cows and some local folk. Occasionally we stopped to take photos of the lush countryside dotted with small colorful towns highlighted by sprays of sunlight. Then we stopped for a leisurely lunch with German beer and were on our way back to the barge. I was tired after lunch, but knew I could make it back if we didn’t get lost again. As I stood examining the map and written instructions, I suddenly felt dizzy and lightheaded. When the dizziness didn’t dissipate after several minutes, I decided to take the van back to the barge. It wasn’t like me to not complete a ride, but I didn’t want to risk a fall.
I was sufficiently worried about this episode that I was cautious during the next few days of biking. It didn’t happen again until I had been back home for two weeks. I had just taken a two-hour spinning class, a class I had taken many times before. The dizziness left me feeling fatigued for hours. I was troubled. It was no longer an isolated event. Two days later, after another vigorous spinning class, I again felt dizzy and lightheaded. My worry had now piqued. (I was now worried.) Did I have a blocked artery? Was I about to have a heart attack? Would I have to have bypass surgery as my sister did at age 60! Would I have to give up biking and working out? Am I really getting old? I called my doctor. I just wanted to ask him some questions. He responded by urging me to get checked out immediately at “urgent care.” Still seeking reassurance I asked my son, a physician and a runner, what he thought could be going on. He suggested I could be stopping intense activity too abruptly, sending blood to my overworked legs and leaving me lightheaded. It was just what I wanted to hear. Perhaps it was nothing more than an insufficient cool-down.
Yet, anxiety consumed me. To check out how my body was doing, I rode my bike later that week on a neighborhood bike path. This time, I again experienced dizziness, so much so that I had to sit down on a rock before I made my way back home. My worse nightmare was that I would not be able to bike any longer, that my fit body would atrophy and I would feel tired all the time. I visualized my arteries clogged with crud, and that at least one of them was blocking the flow of blood to my heart. I was outraged! For all my efforts to be fit, my body was failing me and getting old. My bad genes were catching up with me.
As my anxiety mounted, I felt connected to my son Josh who suffered with a damaged heart all of his life, and who must have worried about his mortality and quality of life in the final years of his life. I wondered how he carried that much anxiety by himself, rarely sharing his feelings with anyone during that time. I know that he monitored his health regularly, had worked out as an adolescent to “strengthen” his cardiovascular system, but he rarely talked to anyone about his concerns. He maintained tight control over his medical care, incessantly questioned his doctors about their thinking, and was regarded by them as a collaborator in his care. Josh’s conversations with me were limited to my questions and his tight-lipped responses.
A series of cardiac tests on the treadmill revealed that my heart rate, which had a resting rate of 49 beats per minute, soared to 196 when stressed by intense exercise. This rapid heart rate deprived my body of the oxygen it needed to recover, and resulted in dizziness and fatigue. I was diagnosed with supra ventricular tachycardia (SVT), a condition generally treated with beta blockers, or in more severe cases with an ablation procedure. I was familiar with ablation since Josh had undergone several such procedures.
This experience brought back memories of what brought Josh to the attention of the medical community when he was 21. Josh was at college at the time, and playing soccer, when he passed out on the ball field. He finally called us to ask for our advice on what to do about this problem of dizziness and of his heart beating rapidly for periods of time. Alarmed, I told him he had to come home to get checked out by physicians who knew about his condition. The physician he consulted at Children’s Hospital urged him to admit himself immediately because he risked sudden death from a thrombosis. This led to a series of efforts to get his heart rate back to a normal rate, many tests, wearing a heart monitor for 48 hours, and finally referral to an electrocardiologist who limited his physical activity and followed him for several years thereafter. This same cardiologist told us, his parents, that Josh’s heart was far more damaged than his level of activity would suggest.
Was Josh talking to me through my body? Was he trying to tell me about what it was like for him all those years—the worrying, the watchfulness, the self-monitoring involved in all those medications and procedures and doctors’ visits.
The cardiologist prescribed beta blockers to limit my heart rate. After two weeks of incredible fatigue and sleepiness, I told her that I couldn’t tolerate them and would she consider other medications. Her response was that we should consider ablation.
Ablation!! The words and associations with it sent me whirling. Ablation was the procedure that was used to correct the electrical problems in Josh’s heart in the final year of his life. Ablation involves a probe sent to the heart to burn off a section of the heart tissue to correct the abnormal electrical currents that produce fibrillations. The final ablation procedure, which we hoped would be the cure-all for his atrial fibrillations and which involved the latest technology, was what finally led to his death. He developed ventricular fibrillations as a result of the procedure and his organs began to fail. I felt like I was living in Josh’s body, acutely aware of his final days.
I consulted another cardiologist for a second opinion. Fortunately, he was more cautious about how to proceed, suggesting that we try to understand what was underlying the rapid heart rate, and perhaps to experiment with other medications. After that consultation, I purchased a heart rate monitor to check my heart rate while exercising. My heart rate has only occasionally exceeded 135 beats per minute, (slightly above 80% of maximum for my age and weight), since that consultation. And, like Josh, I am determined to keep monitoring my heart rate, and to adjust my exercise routines accordingly.
And this annual period of mourning, that occurs every fall between Josh’s birthday and the anniversary of his death, was finally over for now.