Ted Tunison
"MIGHTY" AND "FINE" - MY TRANSPLANT STORYIn September of 1981, I traveled from my home in Denver, CO to Springfield, IL. I made this trip to visit my friend Carol. Carol was my best friend, the love of my life, who eventually would agree to become my wife. As I drove across the country I had time to reflect on my life to this point. I had experienced some personal problems, but now, I believed, I pretty much had my stuff together. I was also at the peak of my career, which gave me particular joy. I was deeply involved in my thoughts and feeling good about myself. I lit another cigarette, and took a long drag. Only then, did I look in the rear view mirror and notice the flashing red lights of the state trooper car. It was the first of many surprises to come over the next few weeks. I arrived in Springfield on a Friday evening, and we went out to dinner. By Saturday morning I had stomach pains that surely would rival those of giving birth. Carol took me to the hospital emergency, where they poked around some, gave me some pills and sent me home with the admonition that if things did not improve I should see a doctor. DUH!!!! By that afternoon I could not stand up. The pain was the worst imaginable. I was praying for relief, even death, and the quicker the better. We rushed back to the emergency room, then admission to the hospital, and surgery the next day for a burst colon. The cause: An acute case of diverticulitis, complicated by peritonitis. I was fortunate to survive this adventure. While in the hospital, a number of student interns were practicing taking medical histories. One in particular, took special interest in my comments that I seemed to be frequently short of breath. A chest x-ray was ordered. The next day my surgeon stopped by to see how I was recuperating and as he was about to leave the room said, "Oh, by the way, I saw something on your chest x-ray that does not look good." "I've asked a colleague of mine to stop in some time next week and talk to you about it". "He's a specialist in pulmonary diseases and can give you more information than I can". "Have a nice day". I was too stunned to respond, and he was gone before I silently scream, "What the hell are you talking about"!!!?? The next week, on schedule, the pulmonologist walks in and tells me the diagnosis. I have Alpha One Anti-Trypsin Deficiency, a genetic disorder that leads to emphysema in your mid-30's, or much later if you are a non-smoker. In 1981, a cure was not available, nor was there an effective treatment. I was told, given my present condition, statistically speaking, I could hope for 9-12 more years of life, and they would not be pleasant years, as my condition would most surely, steadily worsen. I was 37 years old, and I had about 30% lung function left. My coping mechanism of choice was to go on with my life as if nothing had happened. Save for attempting to quit smoking, I would ignore this bad news, and through sheer determination would not only survive but thrive. I had been raised to believe there was no obstacle you could not overcome through hard work. My mother used to say when you encounter a wall of resistance you either go around it, over the top of it, or if necessary, just keep banging away at it till the damn thing falls down. This advice served me well in many aspects of my life, but not when it came to this disease. While I was huffing and puffing, going about my business, the disease was slowing continuing to eat away at my remaining lung tissue. I would not be able to ignore the problem for long, and by the mid-80's it was obvious I was in serious trouble. The percentage of lung function had skidded to the low 20's, and all physical activity had become exceeding difficult. Even climbing one flight of stairs, while I could still do it, left me exhausted. Looking back, it is now obvious my ignoring phase was merely the second step in a five-step process people go through, when told they will die of an incurable disease. Step one is denial. This is when a voice inside you is saying something is wrong and you need to seek help, but you choose to deny that voice. In the late 1970's, I knew I tired easily but chose to not seek out a medical opinion. Rather, I told myself I was just working long hours and smoking and drinking too much. Step two is to ignore the disease, as if it didn't exist. Step three is anger. This is when you blame anyone or anything for the horrible fate that has been delivered to your life. Based on the amount of time spent in this phase, this clearly was my favorite step. I was able to generate tremendous anger that, of course, solved nothing and only made matters worse. Anger eats up energy in copious amounts, energy that I didn't have to waste. Step four is to negotiate. This is when people speak to a higher being, typically God, asking to be relieved of their disease. They promise, if the wish is granted, to be pure of heart the rest of their life and do nothing but good deeds, etc. Step five is acceptance of the disease. It is not surrender to the disease, but merely acknowledgment of the reality. This acceptance gives you the peace and clarity of mind to explore realistic options to improve and extend your life. In the late 1980's, at the height of my anger phase I sought psychological counseling. I was only there for five sessions, but it helped clarify my thoughts in ways that would fundamentally change my life for the better. The therapist taught me not to fight everything. Sometimes, it is more productive to surrender than to fight, such as when you catch a cold or have the flu. He helped me understand that my real strengths were my intelligence, my determination, and my ability to focus on a problem like a laser beam. Lastly, he told me it was my choice to live every day, and that I get to make this choice over and over and over, but if I choose to die, I only make that choice once. Looking back now, this seems so obvious and simplistic, but at the time, this was a profound, personal breakthrough. For the first time since hearing my death sentence, I could now focus on living, one day at a time, and stop the constant thinking about, and planning for my death. Now things really began to happen, things that had been readily available to me all along, had my anger not blinded me to see. I began visiting a pulmonary specialist at Barnes Hospital in St. Louis. I joined a national support group for fellow deficient Alphas. I read everything I could find to better educate myself on my disease, as well as dealing with anger, nutrition, exercise, supplemental oxygen, etc. I learned a process had been developed to deliver rich doses of the enzyme my body was lacking. It was called Prolastin, and could be given intravenously. In 1987, I would be the first person in the St. Louis area to receive Prolastin. I would continue to receive infusions of Prolastin every two weeks for the next ten years, or until my transplant. There is no question in my mind that this treatment was one of the primary reasons I was able to live long enough to reach the ultimate prize. I discovered Dr. Joel Cooper had performed the first successful, double lung transplant, in 1983, in Toronto. I also became aware that he had moved his staff and operation, so to speak, to Barnes Hospital. With this knowledge, I sought to be evaluated for a transplant at the earliest possible time. I was turned down. Instead, I was told, ill as I was; I had not reached "end stage" development. End stage is defined as the length of time they expect you to survive, which just happens to be a few months longer than the anticipated time to be spent waiting for a suitable lung. Instead of accepting me for evaluation, I was told there were three things they wanted me to accomplish as soon as possible. First, get on supplemental oxygen full-time. Second, retire if I could, or change my work situation to put less stress on my body. Third, get into a pulmonary rehabilitation program. Within a year I had accomplished all three tasks. My doctors continued to monitor my lung function every three months, with the understanding they would call me when I had reached "end stage". About two years later, Carol and I were reading the newspaper when the phone rang. "Ted, I just looked at your last P.F.T.'s, and I think the time has come to schedule your evaluation for a transplant". The speaker was my pulmonologist, Dr. Mitchell Horowitz. I hung up the phone and told Carol what he had said. We hugged, cried a little, and then quickly reviewed the conclusions from previous conversations to make certain neither of us had changed our minds. In ten minutes I called him back and said, "let's do it". The formal evaluation was scheduled for early June, 1996. The process takes a full three days. They use this time to explore every part of your body to make certain there is nothing else wrong with you. It is the mother of all physicals. Along the way, you are also observed in terms of mental stability and attitude. In short, you can have bad lungs, but not much else wrong with you. In my case, during an examination of my heart, the doctor said I had significant blockage. This was new and stunning news to me, and created a huge flap. I was immediately convinced they would not waste a perfectly good set of lungs on someone who had a defective heart. After months of agonizing worry, and two heart stress tests later, it was finally confirmed my heart was just fine. I never did find out what caused the confusion. Was it a bad test, which had originally showed a problem? Or did the doctor make a bad reading of the test results? I didn't know and I didn't care, because, more importantly, I was placed on the waiting list for a lung transplant, effective the first week of June, 1996. Carol and I had previously determined we would keep ourselves as busy as possible to help pass the time more quickly, and to avoid thinking about the big IT. So, we packed the oxygen concentrator and my new friend, the electric scooter, and headed for our beloved northern Michigan for the summer. We returned to St. Louis in the fall, but come winter we loaded up again, and headed to Florida for three months. In the spring we came home to be told the original projected waiting time of 12-14 months, was now up to 18 months. So, come June, we were back in Michigan for the summer. We returned to St. Louis in September, only to learn the average waiting time was now up to 21-22 months. Still, we didn't dare run away again. Once you get within three months of when they think you could be called, you have to be readily available 24 hours a day. In fact they give you a beeper (I got mine in November, 1997) to insure you can be contacted any time of the day. Getting the beeper is a big deal. It is a tangible symbol you are nearly at the end of a long journey. Now the wait becomes ever more serious. Will the call come today, next week, next month? Can I stay alive long enough? You keep on waiting. Stay focused, be patient, keep an upbeat, positive, attitude. Do not, repeat, do not allow yourself to become depressed. It's OK to be scared, everyone on the list is scared. Those who say they are not frightened are liars. We wait and we wait and we wait. It is impossible to describe the level of stress and anxiety you live with every day, as you wait and wait and wait. You see others get their new lungs, and while you are genuinely happy for them and their families, you really, really want your turn to come soon. As bad as the waiting was for us, we had an advantage in that we could live at home. Many of the others had to leave family and friends, come to St. Louis, rent an apartment and attempt to live a normal existence while they wait. We also maintained our pattern of heavy activity to keep from totally focusing on the big event. In the six months preceding my transplant we attended three support group meetings each week, maintained an exercise program six days per week, had the kitchen in Michigan remodeled, bought a new home in St. Louis, and kept as active a social calendar as possible. Clearly, we overdid it on the activities, but looking back now I also understand we were merely trying to stay busy, and more importantly, also stay positive about the future. On February 18, 1998 we had taken some friends out to dinner. We returned home and were preparing for bed. I jokingly said to Carol that, should the hospital call tonight, she should tell them to reschedule, because I was just too tired to go back out today. Two hours later, 12:15 a.m., now the 19th. of February, the phone rang. Carol answered, and because we received wrong number calls occasionally, I didn't pay attention till I heard her say, "How long do we have to get to the hospital"? You would think we would be terribly excited, maybe even shouting with joy, even deliriously happy. It did not happen that way. We hugged, cried a few silent tears, but said few words to each other. Instead, as if on automatic pilot, we carried out our rehearsed plan for going to the hospital. We arrived there in twenty minutes. And to be perfectly honest, that is the last thing I remember for the next 2-3 days. I know I was prepped for surgery. I know I had the surgery. I know I was in intensive care for about two days, and while they're, told a nurse she was a nazi, merely because she was determined to get me up and walking. I know these things only because Carol told me. I remember absolutely nothing. The surgery was successful, and thanks to Carol's note taking, I would later be given the details. I was taken into the operating room at 5:00 a.m. and Dr. Patterson began the surgery at 6:30 a.m. By 8:00 the right lung had been sewn in and by 9:30 the left lung was in place. Dr. Patterson would tell Carol at 11:30 the procedure was over, that it went well, and that I have a "beautiful new pair of lungs". To the extent lung transplant surgery can be uneventful, then mine could be so described. All we know of my donor is that he lived in Fort Worth, Texas and was eighteen years old when his death, brought me new life. As I write this, I am almost four years out from surgery. The drama of the experience is just as real today, as it was four years ago. I went into the transplant surgery with less than 10% lung function. I came out of the surgery with over 100% of potential. I breathed so poorly for so long, I had no idea how good it would feel. In fact, had I known how wonderful my new life would become, I believe the wait for the transplant would have been even more excruciating. I don't know what the future holds for me, and there is only so much I can control. But, of those things I can be in charge of, I will control. I will take my meds without fail. I will vigorously exercise six days every week. I will maintain a positive attitude. I will use common sense in my daily activities, to protect myself against infection. And, I will enjoy and be grateful for each day of this new life I have been given. To do less would be to jeopardize and perhaps waste the gift I have received. About a week into my recovery a nurse came into my room to take my temperature, blood pressure, etc. She paused in mid-task, looked at me and asked if I wanted to listen to my new lungs. I had previously heard my old ones through a stethoscope, and they sounded like a cement mixer. I borrowed her stethoscope, but I could not hear a thing. She said to try again. I did, and still nothing. I was becoming frustrated. "What am I doing wrong, I don't hear a damn thing". "Be quiet, be very quiet and listen as carefully as you can", she said. I did as told, and then I heard something. And I heard it again. Then again. And again. It was a gentle whoosh; so gentle it was difficult for my untrained ear to hear. Whoosh. Whoosh. Whoosh. Eighteen-year old lungs giving me life with each breath that I took. Whoosh. Whoosh. I reached out, took her hand and started to tear. She looked at me and said, "That's a mighty fine pair of lungs you have". And that is how my new lungs got their names. The left one is called Mighty, and the right one is named Fine. And so Carol and I continue down the road of life, with the two new kids, Mighty and Fine. We can't predict what lies ahead for us, and wouldn't want to if we could. What we have learned, however, is that to enjoy the present, we must never forget the past. This paper was written to help our memories, should we ever start taking what we enjoy today, for granted. Ted Tunison #406, Barnes Hospital, Feb. 19, 1998 |
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