During my early recovery, I embraced the promises of my doctors, physical therapists and friends that I would soon feel so much better now that my heart was repaired. But I had no symptoms prior to my surgery, which is pretty unusual for CABG survivors. It is my post-surgery life that has been challenged by new and unexpected limitations.
The inability to regain running as my major form of exercise was particularly disappointing. I ran cross-country in high school and continued running several miles most days for more than three decades after college. Running was how I centered myself to handle the daily stresses of life. It regulated my brain chemistry to keep me on a more even keel. I ran one marathon; several half marathons, and logged several dozen 10-k races. I was proud of being in good shape.
The cardiac rehab program includes an exercise group of CABG survivors training to run the wildly popular annual Bolder Boulder 10-k race. I had run the race many times prior to surgery, always at paces under eight minutes a mile. I eagerly joined the training group half a year after my surgery, and expected to run, or at least jog, the race in a triumphant return two months later.
I quickly discovered that I couldn’t keep up with even the slowest joggers. At 56, I was one of the youngest members of the rehab group, and, as a long-time athlete, I was one of the fittest. But I couldn’t keep up with the oldest and heaviest members of the group. Once, finishing a jog dead last, the rehab leader measured my heart beat at 165 beats per minute, which was much faster than safe so soon after my CAGB.
Near the end of one of the jogs, I felt a deep cut through my right thigh. I thought I had been grazed by an errant bullet or somehow sliced by something I had unknowingly run into. Even more vivid was the sense of warm blood gushing down my leg, sticking to my pants and pooling above the elastic in the bottom of pants leg.
I limped up to the rehab leader, sure she would call an ambulance, but instead she said I should try not to limp because there was nothing wrong with my leg. The lack of blood staining my off-white sweat pants supported her assessment, but the physical experience was so intense that I remained convinced that a deep cut existed. I limped into the bathroom and exposed a perfectly normal, uninjured leg. There was no cut, only the pain of one. There was no puddle of warm, sticky blood, only the sensation of it.
I was unnerved and left the training session shaken. How could I be this wrong? I experienced exactly the same pain many more times, though it finally disappeared after five or six years. I have since learned that such displaced pain is a relatively common occurrence among amputees and other victims of traumatic events. Apparently, the wiring for your brain’s pain receptors gets mixed up and sends false signals. As recovery continues, the wiring circuits gradually repair themselves.
While I finally accepted that running distance races was no longer possible, I was surprised to discover that much shorter distances were out as well. About seven months after my CABG, I ran roughly 100 feet for a bus, jumped onboard and sat down, only to find that I couldn’t catch my breath. I clutched the seat and gasped for breath, overcome by dizziness and sliding toward unconsciousness. The bus driver stopped the bus, came back to me and pulled out a phone to call 911. It took all my breath to say “No ambulance” several times until it became clear I was going to recover. The bus was oddly quiet for the rest of my trip.
Maybe my CABG surgery improved my chances for survival, but apparently at a corollary cost. I still cannot accelerate above a walking pace for more than a few seconds. The best medical explanation I have come up with so far to describe what happened to me is pericardial constriction. This occurs when scar tissue forms in the pericardial sac after surgery and denies space for the heart to take full blood intakes under stressful conditions, such as running.
About 10 months after the CAGB surgery, my cardiology center recommended I take a nuclear stress test to assess my recovery. At the time, this test took about three hours and involved injecting a radioactive marker into my blood. I lay very still for two 15-minute stretches while a machine scanned my body picking up signals from the marker. The readings were taken before and immediately after a vigorous walk on a treadmill.
I finished the test easily and went home without a care. The next day, however, I received a phone call from the center saying I needed to return right away. The “right away” was emphasized. It was already late in the day, but I called Cheri and we were there within an hour. We were met by a young physician’s assistant, who said that the test had revealed a heart problem; I was scheduled for an angiogram the next day.
I had gone through CABG surgery to prevent problems like this. We balked, and the young woman repeated forcefully “You have severe heart disease,” as if that would reassure us about the angiogram. We said we wanted to talk to the cardiologist who had ordered the test. She said he had gone home, and my own cardiologist was away on vacation. In fact, it was after hours by then and nearly everyone had gone home.
She ultimately left the room and returned with a cardiologist who was working late. He explained that the angiogram was exploratory because some of the test results suggested there was still something wrong with my heart. He offered to replace the absentee cardiologist and do the angiogram himself if that would make us feel more comfortable. We reluctantly agreed.
I was upset when I reentered the hospital, this time scheduled to be the last angiogram of the day. I was nervous and sweating for several hours as I lay fully prepped for the procedure. An alarm by my bed went off frequently, indicating that my blood pressure was dangerously high. They gave me valium, then more valium. Eventually I was rolled into the operating room.
The next I knew, the cardiologist was standing with Cheri by my bed saying the angiogram revealed some small blockages that he reopened with stents, but no other obvious damage. I was anxious to go home, but was told that I needed to wait a couple of hours for observation before I could be released. But since it was late in the day, I would have to spend the night in the hospital because everybody in the heart unit was going home. The final bit of unfortunately news came when they said no standard rooms were available, so I would have to spend the night in the same ICU where I had died months earlier.
I was discharged in the morning, greatly shaken. That afternoon, I ignored the directive to stay off my leg to give the puncture into my femoral artery a chance to heal. If that wound ruptured, I would likely bleed out before I could get help. Lost in thought, I started to take a walk, which turned into a hike, which ended up a long strenuous uphill trek. I was very upset and not thinking clearly. When I finally came to my senses, I was covered with sweat and on a mountain ridge miles from our house. I was frightened that I would bleed out and die alone on the trail, but I slowly retraced my steps and finally made it home safely.
A couple of weeks later I consented to a second nuclear stress test to confirm that the problem had been fixed by the stents. I started the test at dawn and finished around 9:00 am., but this time I was asked to remain at the heart center until the results were in. I waited half the day after the multi-hour test, which itself had followed a 12-hour fast. Long before the results were in, I was dizzy and sick from stress and lack of food. Twice receptionists distanced themselves from responsibility by assuring me that the cardiologist knew that I was still waiting.
Around 1:00 pm, I called Cheri for help. She came to the heart center and found the cardiologist in his office eating pizza. She brought him out to talk to me; it was the first time we had met after either of my tests. He told us that the heart problem revealed by the nuclear stress remained and that he had a slot reserved for another angiogram in a couple of hours. Since I hadn’t eaten all day, he said, I could go directly to the hospital and have the procedure that day. He would perform it. As he and Cheri were talking logistics, I suddenly blurted out “No!” No more tests, no more cardiologists, no more surgeries, no more procedures. I have not consented to any heart tests since.
Pain continues to be part of my life. Contractions of my scar tissue are chronic, but not debilitating. Muscle aches from high-dose medicines are chronic and somewhat limiting. Severe stomach pain from drug reactions is intense and requires me to lie down. Intestinal bleeding from blood thinners once required a return to the hospital.
This event occurred six years after surgery, when I was hospitalized as an emergency intake suffering from a very low hemoglobin level of 6.8 due to blood loss from internal bleeding, probably induced by a combination of blood thinning Plavix and aspirin. I was admitted around 8:00 pm; two nurses and a doctor kept me up all night preparing me for an emergency endoscopic procedure early in the morning.
There was an IV in one arm carrying saline solution and nutrition, a blood transfusion entering through an IV in another arm, and I was drinking a gallon of the disgusting liquid concoction every older person hates. At one point around 3:00 am, one of the nurses took my blood pressure. I glanced at the monitor and saw the results—58 over 38. She shot a worried glance at the second nurse. They called in the doctor who ordered a second transfusion, which took until nearly dawn to complete. I was knocked out for the endoscopy early in the morning; the internal bleeding was arrested. Use of Plavix was discontinued.
The gastroenterologist apparently came into my room shortly afterward to explain the endoscopic procedure and provide instructions for my recovery. I have no memory of this visit. When I obtained my hospital records on my own initiative a couple of weeks later, I saw a form summarizing this visit. My condition during the meeting was correctly noted as “grossly nonfocal.”
Confidence in the medical profession had been a reason I survived the CABG surgery. Losing that confidence was not a small loss, but the accumulation of mistreatment by the professionals responsible for my care was becoming overwhelming. It is difficult to live with severe heart disease worrying that I might miss a signal and not receive the medical advice necessary to save my life. But that’s just the way it is.