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It was November 18, 1993, and dinner was delicious. It was Barry’s birthday, and our friend Nino had come to our home in Lafayette, Colorado, to cook with me. Nino’s a great cook and the afternoon passed swiftly as we prepared our favorite dishes. I cooked Indian food; he cooked Mexican. What a feast.
Later that night I started wheezing, which was unusual for me. Within moments I could barely breathe. Barry called the doctor and we were told to go immediately to the emergency room. Sara, our daughter, was only five years old at the time and already asleep. Luckily, our neighbor was willing to watch her while we rushed to the nearest hospital. Barry stayed with me in the emergency room until I was transferred by ambulance to University Hospital in Denver. Then he went home to be with Sara. I was scared, lying in that hospital room, not knowing what was happening to me.
I was diagnosed with congestive heart failure (CHF), a condition in which the heart fails to pump blood with normal efficiency, affecting the other organs. My lungs, unable to function normally for lack of blood flow, filled with fluid, a condition known medically as pulmonary edema. The salty dinner seemed to have been the reason for the fluid retention that evening; but the underlying cause, as we were soon to find out, was more serious.
After the drama and fear of the previous evening, just waking up and being alive was ecstasy. When Barry came the next morning we were both struck that, instead of being scared and upset, we felt a measure of grace and peace, which was both inexplicable and undeniable. Of course, grace and peace were not all that we were to feel.
I was hospitalized five days for observation and testing. The most important test was an angiogram, and it was done in the cardiac catheterization lab. It would determine if I had coronary artery disease. A small catheter was inserted into an artery in my groin and guided up to view the arteries of my heart, to see if they were blocked. Dye was inserted so that the arteries could be seen.
Because local anesthesia was used, I was awake during the procedure and I watched the monitor as the dye went into my arteries. My interest in science and my fascination with the technology in that room brought another dimension to the moment. I watched with fascination the inner workings of my body. Dr. Groves, head of the catheterization lab, performed the angiogram. I was relieved to hear him say my blood vessels were as clean as a baby’s, but it meant that the cause for my CHF was something else.
Since that first visit to University Hospital I have seen Dr. Groves many times. He’s my favorite doctor in that lab. He’s confident and highly skilled, and he also shows caring and concern for all his patients.
Test results showed the cause of this episode of congestive heart failure was hypertrophic cardiomyopathy, a thickening of the heart septum (the wall between the right and left sides of the heart) that causes the heart to pump less efficiently, leading to congestive heart failure and, eventually, to death. There is no cure for this disease. Five close family members-my sister, Joanne; my aunt Clara; her two children (Paula and Mel); and Mel’s son, Josh-had cardiomyopathy. I was the sixth. Even though medications can alleviate some of the symptoms, such as shortness of breath and fatigue, the heart continues to deteriorate.
Cardiomyopathy carries with it the risk of sudden death from arrhythmias (irregular heart beats). One night while Josh was walking from a parking lot to a restaurant, he collapsed and died. He was twenty-seven years young. He died before I had symptoms-when I thought I never would have symptoms. His loss was devastating; his family’s grief deep and long lasting. The possibility that this could happen to me did not escape my awareness.
During my hospitalization, the chief attending cardiologist came to see me. He is fascinated by statistics and research and I respect his extensive knowledge, but he is not known for a sterling bedside manner. I can still see him standing at the foot of my bed.
"You have a condition called cardiomyopathy," he said, "and at this time there is no cure for it. It caused this episode of heart failure. You can expect that within the next ten years, you will need a heart transplant."
I was so shaken that I couldn’t speak. For the next two years, I could only refer to the transplant as the "BIG T."
I didn’t know anyone with a transplant. The mere thought of such a prospect was shocking and frightening for me, for Barry, and for everyone who knew me. Sara was only five and didn’t really understand what we were facing. The possibility of a transplant meant I was dying, but death was an issue for other people, not for me. I wasn’t prepared to lose everything-especially not my husband and my daughter. I couldn’t imagine Barry as a single father, Sara motherless. I was overwhelmed.
Five days later, when the doctors were convinced I was stable for the time being, I was sent home. I became a regular patient at the heart failure/heart transplant clinic at University Hospital in Denver. I still laugh when I recall my first visit. I walked up to the receptionist and said, "My name is Gaea Shaw and I’m here for the heart success clinic." (I just hated that word "failure"!) The receptionist looked serious, already fried by eight o’clock in the morning. Her head down, she said, "You mean heart fail-." then looked up with a grin. I realize now how blind I kept myself to the obvious fact that the two clinics were together for a purpose and that eventually I would graduate from the heart failure side to the transplant side.
My will to live is strong. Grace and grit, I call it. I was a compliant patient. I went for my doctor’s appointments, took many medications, and adhered to a strict low-sodium diet. Cutting out salt to reduce fluid buildup in my body was required in order to maintain some semblance of a normal life, but this wasn’t easy because I was addicted to salt.
My main source of support came from my sister and cousins, who had more experience than I did in coping with the disease and medications. They all had strong spirits; it was nurturing to stay in touch with them. My cousin Paula sent me recipes for cooking with low or no salt and teased me about my love of salty chips. I watched myself do something so many of us do. Even though I knew the life-threatening risk I was taking, I still resisted cutting out salt. It took about six weeks and was painfully hard, but I knew my life depended on it. I gave up salt.
I had to bring my own dinner to potlucks because the food brought by the other guests contained salt. I made my own bread with practically no salt, and in general I just kept the salt down to a bland but necessary minimum. Sometimes I was downright angry about the whole thing. But it kept me alive, so I did it.
If I gained weight suddenly from fluid retention I took diuretics, medications to get rid of excess fluid in the body. All the drugs and the dosages needed continual monitoring, and I often felt short of breath, exhausted, weak, or light-headed. Strenuous exercise was out of the question, as it tired me so quickly. In the earlier stages of CHF I could walk a little, but that changed as time went on.
A few years before all this happened I had left teaching and started my own small business as a wedding videographer. I enjoyed shooting weddings and the work was certainly different from teaching. After my hospitalization, however, the only way I could continue running my business was by hiring an assistant to carry all my equipment.
Barry took over more of the housework, grocery shopping, and yard work. He was willing to do whatever had to be done to make my life easier. He never complained, except to express frustration when I overextended myself and ended up exhausted. I remember one doctor telling me during this phase, "Gaea, most people can afford to get exhausted once in a while. You can only afford to get tired." Barry was, simply, devoted and compassionate. He just put one foot in front of the other, so to speak, to make it through those years. Shortly after the transplant, he confessed that for years he checked on me in the middle of the night to see if I was still breathing. It wasn’t until after the transplant, when he saw that I was okay, that he gave himself permission to melt into some of his own exhaustion and stress from the years of taking care of me.
We only heard an occasional complaint from Sara that her mommy couldn’t do very much. I don’t think she really understood the enormity of what was going on until later. Truthfully, I don’t think we did either; we just saw my heart slowly deteriorate and took each downward phase as it came. Because Sara is adopted, we were relieved that the legacy of congenital heart disease would not be passed on to her.
In April 1994, less than five months after I was diagnosed with cardiomyopathy, Barry, Sara, and I went to southern California to be with my mother. She had advanced Parkinson’s disease and was near the end of her life. My brother, Ron, also has Parkinson’s disease. In our family, Parkinson’s and cardiomyopathy are the result of a genetic glitch. In other words, those of us with this damaged gene are likely to get one or the other disease.
The visit with my mother was difficult because we knew it was the last time we’d see her. I took some small solace in finding words to express my love and appreciation to her, but saying goodbye was excruciating. If that weren’t emotional enough, we got a phone call while we were there that my beloved sister, Joanne (who was in northern California for a dear friend’s funeral), had died unexpectedly in the middle of the night. Heartbroken, we drove to Joanne’s funeral. My mother, too sick to attend her own daughter’s funeral, died two weeks later. I was beside myself with grief. I had just lost the two most influential and dearly loved women in my life.
Joanne had the sudden-death syndrome of cardiomyopathy, a component that my doctors continually searched for in me but never found. It was that aspect of the disease that claimed her life. She had been evaluated for a transplant and decided against it, but she was reconsidering the possibility when she died. I wish she had gotten a transplant before it was too late.
My sister’s loss was enormous and grieving took a long time. We have a little antique cabinet in our living room that Barry turned into an altar. It holds Buddha statues, feathers, candles, and other little treasures that have special meaning for each of us. Barry brought out photos of Joanne and my mom and placed them on the altar. It was many months before I was ready to return the photos to their albums.
Time passed, and the only physical change for me was a downward spiral. For the next two years I continued my clinic visits and tried an experimental medication with hopes of reversing or slowing the disease progression, but nothing improved. I became more frail and limited with each passing day. But I was stubborn and wouldn’t quit working. One evening in the fall of 1996, while shooting a wedding, I went into atrial fibrillation-irregular, chaotic heartbeats. I was frightened and uncomfortable. My assistant took over and shot the rest of the wedding reception.
The only way to bring my heart back into rhythm was to electrically de-fibrillate (cardiovert) me with those paddles you see in hospital ER programs on TV. But this was no simple deal. The risk of stroke with a defibrillation is high because the procedure could loosen a blood clot and send it to the brain, so I needed to take Coumadin, a blood-thinning medication, for six weeks before the procedure could be done. It was a long six weeks. I could feel my heart beating chaotically in my chest and I felt even more tired and off-balance than usual. I was scared that I might get worse before they could do the procedure. I might even die. And Coumadin is tricky. There had to be weekly monitoring of my blood-clotting ability. If my blood was too thin, I could hemorrhage easily; if it was too thick there was the risk of blood clots. The doctors changed my Coumadin dosage frequently over the six-week period, until my blood was just right.
Finally it was time to have the procedure. Barry and I went to the hospital. I settled into my bed and waited. The doctor came to tell me the risks of the defibrillation: stroke; death; procedure failure which would require more hospitalization and drugs; blood clots, especially in the lungs or legs; allergic reaction to the anesthesia; skin burns from the voltage going through the paddles.
I signed the release form, acknowledging to myself that a stroke was more frightening than death. The procedure was done in my hospital room. The anesthesia contained something that totally blocked memory of the procedure. I think this is done because a patient flat-lines (dies, so to speak) for an instant, and such memories could be traumatic. I certainly don’t remember anything that happened after the anesthesia took effect. I awoke with paddle burns on my tender chest. The defibrillation was a success and my heart rhythm was back to normal.