Dispatches from the Heart Read online

  Summer could not get to Midland too soon. Finally, a break from vaulting and somersaults. Little did I know that Mother was going to use the swimming pool, the petri dish of polio cultures, to drive all vestiges of weakness from my scrawny legs. I learned to swim so I could swim laps. I was bribed to swim across the pool (cowboy boots). And the length of the pool (a matching hat). And the length and back (a real switchblade knife). By the next summer, at the ripe old age of five, some days I arrived at the pool before the lifeguards. By the end of that summer, I could swim farther and faster than anyone twice my age—in any stroke, underwater or not. How about without taking a breath? That too.

  Swim meets logically followed, and diving. It’s just tumbling but landing in the water. By the time I burned out completely and found the nerve to tell my mother, I had won state at age fifteen in three-meter diving and could swim any stroke on the high school team. I was giving up something I had done for nearly ten years and had done well. I was part of two Amateur Athletic Union (AAU) relay teams that seldom lost. The AAU promoted various amateur sports, much like the YMCA, and hosted sporting events such as summer swim meets and basketball tournaments. Members of those teams included an All American and a future Olympic gold medal winner. But by now I hated swimming and diving, so I took up tennis instead.

  The rehabilitation after polio prepared me for the other obstacles and challenges I would encounter. It also inoculated me against giving up.

  More than sixty years later and through the magic of Facebook, I was able to locate Sandra Duncan, the six-year-old who had been diagnosed with polio the same day I was. We were able to visit about our shared experiences. She had a nonparalytic form of polio and recovered. Unlike me, she was confined to the hospital during her illness and recalls seeing a young boy in an iron lung. She had a friend that lived across the alley who also contracted polio and ended up in braces. At the suggestion of Dr. Wyvell, Sandra’s mother enrolled her in dance classes, and Sandra went on to be one of the fastest members of the San Jacinto Junior High track team eight years after getting polio.

  Every one of us gets polio. OK, not actually polio, but everyone gets their own personal “polio,” a major event that forever alters their life trajectory for good or bad. Sometimes it is called drug or alcohol addiction, a broken hip, or cancer. It might be a heart attack, a drunk driver-related auto accident, losing a child, divorce, depression, or domestic violence. Many of these challenges are life changing and often more formidable than what I went through. I am convinced that with each of these personal “polios” comes a chance for rebirth through recovery and the fight to survive—a life lesson for the taking, to be learned if we only will.

  I am very blessed to have gone through the polio experience because while it temporarily weakened my muscles, it forever strengthened my resolve. Against all reason and logic, I felt as though my role in life was not to ever give up. If my body had been given a second chance after polio, maybe there was a reason.

  Ten years after my skirmish with polio, I was blessed with another life lesson. Instead of a virus, this time it was a future Olympian with an important message for me that would change my life.

  In the summer of 1965, a young man named Keith Russell would make a brief but life-altering appearance in my life. He gave me the tools to strengthen my body as well as my resolve, and he was in my life for less than three days.

  At the time, Keith was one of the best divers in the county and was hoping to make the US team for the 1968 Mexico City Olympics, which he did. My hometown of Midland was hosting a swim meet and diving exhibition in the summer of 1965, and since I was a young and aspiring diver, it was only right that Keith and another diver would stay at our home during their visit.

  I was thirteen years old, and Keith was seventeen or eighteen. I was thin, and he was built like a cross between a world-class gymnast and a modern-day sprinter. He was strong, quiet, and, I learned, a Mormon. I did not know what a Mormon was, except that they were all from Utah, like Oklahomans were Okies or people from Ohio were Buckeyes. Keith was not from Utah, so I guess I knew less about Mormons than I thought. But as I said, I was thirteen.

  I observed that before each meal, he returned thanks, and during the meal, he politely passed on coffee, tea, or soda. Later, I asked why. Keith shared with me that he considered his body to be the Lord’s temple and how he tried to treat it that way. Over the next few days, he also shared other things directly related to his lifestyle. He was one of the best divers in the world but remained humble. Mind you, these could have been the same things my dad shared with me, but for some reason I listened to Keith. Maybe not so much listened but absorbed.

  I never saw Keith again and would have no contact with him over the next fifty years. But I would never forget our conversations, and his impact on my life was profound. Although I burned out on diving within a couple of years of meeting him, I stayed involved in sports and ended up playing tennis in college. In sports and in other parts of my life, I first imitated Keith and then later embraced his lifestyle. I never drank or smoked, although I do enjoy tea. I did not become a Mormon; in fact, Keith and the other diver were the first Mormons I had ever met. But from that first brief encounter, my life was altered forever. Without it feeling like a sacrifice at all, I tried to treat my earthly body as Keith described, a sanctuary for our Heavenly Father. And like Keith, I always tried to stay in shape. To say he made a three-meter-sized mark on my life would be an understatement. I never came close to achieving the athletic success Keith did, but looking back, I got the message.

  After my transplant, I was finally able to track Keith down. I wanted to say thanks all these years later and to let him know how meaningful the example he set for me has been and how it helped me prepare for my great medical adventure. It turns out that Keith Russell had just retired after a long and very successful career as head diving coach at Brigham Young University.

  Much to my delight, Keith called to talk about the note I sent. Diving was the only thing we did not talk about. He remembered his trip to Midland all those years ago but did not remember me, not that it mattered. He was pleased to hear about my transplant and his small role in the whole big picture. I was able to share with him that my healthy lifestyle gave the doctors many more options. Even with a greatly impaired heart function, I was still able to carry on with life. I skied at altitude, I carried my clubs when I played golf, and I even climbed Half Dome in Yosemite National Park.

  As I related earlier, shortly after my mother passed away, I went in for a physical, the kind you get for an insurance policy, and I reminded my family doctor of my mother’s heart condition. I passed the insurance part easily, but we decided to do some extra tests to determine if I might have inherited cardiomyopathy from my mother’s side of the family.

  Let me say right now how much I do not care for hospitals, medical stuff, doctors of any kind, and especially needles and shots. See polio above. I could still remember the spinal taps and blood transfusions. I was just getting a non-invasive echocardiogram, which is nothing more than a sonogram of a beating heart, like they would do on an expectant mother. In rather bad form, the technician asked if I felt OK. Had I been able to walk into the testing room unassisted? Was I having trouble breathing? Looking at me, he saw a normal, healthy-looking guy in his fifties who obviously stayed in shape. But on his computer screen, the technician saw a heart with thickened walls, and the Doppler image revealed a significant reduction in pumping efficiency. I was on the table, but it was my mother’s heart on the screen. All that I had learned from swimming, all that I had picked up from Keith, and every other positive life lesson I had absorbed to this point would soon be called upon.

  When I was first told what I had, I flinched as if in pain. I had already begun to dismiss what the doctor said. After all, I could work out more, maybe lose a couple of pounds, really watch the salt. Yes, I would will myself through congestive heart failure. This was another swim race, another gymnastics meet, another
tennis match; I just needed to want it more than the other guy. After all, that’s how I had gotten through life this far; I was never as fast or strong or smart as the others, but if I put my mind to it, I would occasionally find a way to beat some of those guys who were faster, stronger, and smarter. And in my very compartmentalized brain, I gradually accepted a very serious heart condition. The rest of my brain was able to function as before, absolutely sure that nothing was wrong with me. This went on for years because I had taught those different parts of my mind to not discuss important things with each other.

  So for the next eight years, I held my own against congestive heart failure. Within a year of my initial diagnosis, Dr. Terreson and an electrophysiologist, Javier Sanchez, decided I needed a defibrillator implanted in my chest in case I was on the river or bird hunting and got an irregular heartbeat, which I did. The device, also called a pacemaker, was designed to gently pace me out of any irregular heart rhythms, and failing that, it could deliver a mighty shock directly to the side of the heart to try and reboot the system. The pacemaker also could communicate, through the skin, to relay information about how my ticker was doing and if the heart needed pacing. I took medications to postpone the inevitable decline in heart function, tried not to dwell on how the end would come, and went about my life. I played golf, I worked at the farm, I fly fished, and I hiked Half Dome. I even had a knee replacement. I lived as though I would not live forever. I learned to sing in the rain since I would not be around by the time the storm clouds passed.

  Four months after the incident on the Rio Grande, and not yet back to full strength, I went into atrial fibrillation, afib for short. As in short of breath. As in your life now sucks. As in you feel as though you are trying to breath through a soda straw. As in your car’s timing belt just slipped, and your pistons and valves are no longer in sync. Your car may run like that for a while but not long. That was on October 31, 2014. I had played golf that day. And as they say in the heart business, “Everything is fine until it’s not.” Now it was not. My getting afib was like having the Mexican peso devalued. Wasn’t much there to start with, even less to work with now.

  Remember that the defibrillator could talk to other machines through the skin? Each Wednesday at 7 p.m., a small box on my dresser would flash with a small red light, reminding me to “interrogate the device.” I would press a couple of buttons on the box, then hold a small corded sensor over the scar where the pacemaker had been implanted. In just under a minute, the box would flash green, meaning the interrogation was over. The quality of every heartbeat since the last interrogation was sent to India or Austin or somewhere and reviewed for signs of trouble.

  Just for fun, I would try and hold my breath during the forty-five to fifty-five seconds it took to download the heart data. I had not been told to, and in fact, when the electrophysiologist saw me do so, he was not amused. But it was my way of showing the little box that I was still in charge. And besides, I found the information submitted during the interrogation to be very intrusive. More than once I received a call a couple of days after a download, and the nurse would ask if I was feeling all right. Once in February I got a call saying there was unusual activity around the middle of the month, and was everything OK? The device had recorded increased heart activity the night of Valentine’s Day. I was beginning to lose control over my own life. It would get much worse.

  Shortly after going into afib, I had my first panic attack/shortness-of-breath episode. I gasped for breath for several minutes before finally being able to breathe normally. I was prescribed an anxiety disorder medication called clonazepam. While it did nothing for the congestive heart failure, it reduced the frequency and magnitude of the panic attacks that came with the seizure-like breathing fits. Soon, I began to look forward to my midday and bedtime visits with clonazepam. I was definitely losing control over my own life.

  “Until I feared I would lose it, I never loved to read.

  One does not love breathing.”

  —HARPER LEE, TO KILL A MOCKINGBIRD

  Six weeks after going into afib, I had to be shocked back into a regular rhythm. Dr. Terreson used paddles on either side of my chest, just like on TV. I was in the hospital for only a couple of days, and except for the two small burn marks, the experience was not too bad. Unfortunately, I continued to decline.

  Three weeks after getting shocked, my wife, Paige, and I traveled to Denver to spend Christmas with our ten-month-old granddaughter. Paige and I have been married and partners in this life for more than forty years. When we were teens, we lived just a few blocks apart, and we dated in high school and college. We had raised three beautiful daughters and been through our share of ups and downs together, but now, whether we realized it or not, we were about to face a test neither of us was truly prepared for.

  Our granddaughter, Eleanor, weighed sixteen pounds, and I could barely hold her while standing. I had trouble even engaging with my family, and I had serious doubts about walking from the car to church on Christmas Eve. I struggled to walk up the eight steps at the front of the church. I could not function normally, and I had panic attacks just being away from the hotel. Paige thought I was being rude, dramatic, and selfish. I could not predict, control, or rationalize my behavior. I was alone and afraid, even with my family. I stayed alone at the hotel for those few days and wondered if they would find me dead the next morning. Maybe one of those spells of gasping for air would be my last. Maybe Paige was right and I was just being dramatic. But no, I was in advanced congestive heart failure, and Paige was not yet ready to accept that. I was dying. Dying just the same way my mother had.

  Forty-four minutes after taking my dose of clonazepam, I would start to come back to life. I would finally warm up after being cold and shivering all day, no matter how many layers of clothes I wore. And one hour and twenty minutes later, I would fall asleep, maybe for the last time. I was never sure. The second night at that hotel by myself in Denver, I prayed as never before. “Lord, if you are going to take me, I am ready. I have had a full life. But please don’t let me suffer like this. I can’t breathe, I can’t breathe. Please do not let me die the way my mother did. Please.”

  If the trip to Denver was not the bottom for me, it was close. We somehow made it back to Midland, and a day or two later, David Terreson called to say we needed to get to Austin ASAP. The downloaded data from my pacemaker was not good. There were significantly more irregular heartbeats and now from a different part of the heart. The original pacemaker was not designed to handle this new irregular heartbeat. A second pacemaker needed to be implanted immediately. So, on January 1, 2015, in the middle of the worst ice storm to hit Texas in the past twenty-five years, Paige and I spent eight hours driving to Austin. Time to fish or cut bait.

  The morning of January 2, 2015, a second pacemaker was implanted and the first one removed. The new one was the latest model with all the latest features for a dead man walking. It had multiple leads, meaning it could pace or shock different parts of the heart. It had a smart chip so advanced that by the time my heart finished a beat, the device was ready to assist on the next beat in a variety of different ways. It did not need to be interrogated as the previous one; it simply found a cell connection and phoned home with any news. ET never phoned home with good news, it was always to report more frequent and longer-lasting irregular heart rhythms. My heart was shaking and shuttering like an old lawnmower started for the first time in the spring. I was now able to feel the arrhythmias (rapid, irregular, or skipped heart beats) as they came more often and lasted longer. The surgery to install the Boston Scientific “HAL 9000” went smoothly enough, but it may have been too little too late. While I was in recovery, the electrophysiologist told Paige that the pacing tests they ran on me while I was out did not go well. The next two weeks would be critical.

  The next heap of fun came the day I was to be discharged. I was dressed and ready and did my best to look healthy enough to go home, but the chest x-ray betrayed me. My right lung was full o
f fluid, and I would have to have it drained. They inserted a very sharp tube into my lung from my back, being very careful not to puncture an artery or hit a rib. I had a good driver, and they got right in, and within thirteen minutes they had drained a liter of fluid. The worst part about the whole thing was the anticipation—I couldn’t see what was going on but had plenty of time to amplify in my mind the actual pain that was to come.

  I was released, and the next day we drove back to Midland to rest, recover, and see if the new pacemaker would help me turn the corner. Barely a month later and again betrayed by another chest x-ray, I got the pipe in the back again. Despite taking copious quantities of diuretics and having my fluid intake restricted, they drained two liters of fluid from my right lung, or what looked like two one-liter bottles of turkey broth. I was getting really close to the bottom by now.

  I gasped for breath almost constantly, and my liver was more than twice its normal size from being deprived of blood. My gastrointestinal system was not working right because of the lack of the all-important blood supply. My voice was faint and raspy, my arms and legs were atrophied, and I could not walk across the room in the evening. I was very close to giving up.

  With all I had been through during my life and all the challenges I was able to work through, I was now ready to quit, give up, and die. Dr. Terreson had run out of tricks and had to turn me over to an end-of-life cardiologist. On March 31, I met with Dr. Mary Beth Cishek.

  Not knowing the magnitude and depth of this first meeting, I went alone to Austin. I brought with me my spreadsheet that included my weight, daily dose of diuretics, blood pressure, heart rate, daily exercise, and comments about how I felt and functioned. Dr. Cishek was mildly amused at the spreadsheet, and she wasted little time after the examination in telling me I would not make it to Christmas and that I was dragging myself through life on will alone. One way or another, I needed hospice care, or I could be evaluated for a possible transplant. But I needed to decide soon.