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by Howell Graham

I was born on February 20, 1962, the day John Glenn; the United States Marine Corp astronaut circled the globe for the first time. My mother says that no one cared if she gave birth to a kangaroo that day since all the doctors and nurses were glued to their TV set watching the momentous orbit. My father and grandfather are Marines; this “first” was doubly exciting for our family.

But I have another birthday… the one that means more to me than my actual arrival in the world. It is October 8th and this year… 2010… I celebrate the 20th anniversary of that event with literally gave me a new life, a spectacular second chance.

Diagnosed at age two, there had been some red flags up until that time. I was sick a good deal, but mostly with digestive problems. My mom read a featured monthly column in McCall’s magazine called, “Everything You Wanted to Know about…” and featured different diseases like measles, rheumatic fever. This month the topic was Cystic Fibrosis (CF) and the bells went off.

The doctor confirmed the fears and told my parents that I would not likely make it to the first grade. They refused to accept this and began an all out campaign to keep me as healthy as possible… postural drainage, a percussive exercise to help expel the thick mucus in my lungs, done several times a day. Antibiotics, plus enzymes to help digest food, and a mist tent, fashioned from bent pipes, which supported a heavy plastic cover. It looked like an oxygen tent but allowed antibiotics to be inhaled through a tube attached to a respirator. My father bent the pipe frame, and my mom made the tent by scaling the edges with a warm iron. After 13 years using this contraption, experts said the tent was doing more harm than good and was discontinued.

Growing up in Charleston, South Carolina, I did the usual activities: swimming, tearing around the neighborhood bicycling, and was the left fielder on the Dixie League Baseball Team in Mt. Pleasant. We had a sailboat and I spent countless hours out in the salt air learning the specifics of sailing the Charleston Harbor. The years went by. I had long passed first grade… the initial date the diagnosing physician at Camp Lejeune had given me.

I came to the University of North Carolina in Wilmington, North Carolina and fell in love with the coastal city and the opportunities I had to continue boating. After graduation, I got a job in real estate. By 1990, my health had deteriorated significantly and breathing difficulties became a constant. When I lay in bed, I could hear my labored breathing. The everyday event like taking a shower or fixing my breakfast cereal and toast, made me breathless. Activities like boating and water skiing were out of the question now. My energy was gone, and the days were becoming long sessions of inhalation therapies and trips to the doctor. The fatigue level now outweighed the stamina level.

My Chapel Hill, North Carolina physician, Dr. James Yankaskas, talked with me about being a candidate for the new double-lung transplant procedure that had just started to be performed at Chapel Hill. The statistics were less than glowing: a fifty-five percent chance of surviving the surgery, not to mention the post-operative risks of rejection and infection. It was a grim decision, but my life at that point was miserable. I knew I had to take the chance I had been offered.

My parents and I moved to an apartment in Chapel Hill for several months. I did a good deal of physical therapy to build up my stamina during this time. When the beeper went off… no cell phones back then, we were ecstatic. The call had come. Dr. Thomas Egan, my transplant surgeon who pioneered the brand new double-lung transplant program at Memorial Hospital in Chapel Hill, had goten a call and was flying down in a private jet from North Carolina to Pensacola, Florida, where a physician’s son had been fatally injured in a motorcycle accident. He had to make sure the lungs were in good condition and that I would have the best chance possible. It is interesting to realize that my new lungs were from Pensacola. I had been born in Tallahassee, just 200 miles down the road but had never been back to Florida since we moved away when I was six months old.

Again the waiting. Some of the young people I knew from the CF clinic came by to wish me luck. I realized that their hopes were riding on me too. The success of this operation could make a difference in their lives in future. I was prepped for the operation in anticipation for Dr. Egan’s report that the lungs were good and waited for the news from my surgeon. Dr. Egan called from Pensacola just before boarding the plane with my new lungs in a cooler. His words were relayed to me; “Everything looks good. Tell Howell, … it’s a go!”

The operation took about 13 hours. Splitting my chest from side to side horizontally with an impressive incision, Dr. Egan cracked my ribs to make an opening to remove my diseased lungs and replace them with my donor’s freshly procured lungs. I only know that I woke up in intensive care unit (ICU) with a beautiful dark-haired nurse hovering over me as I drifted in and out of the haze. Then the scenery changed abruptly. My beautiful brunette was gone and a burly male nurse was adjusting the machinery I was hooked up to. I remember a distinct wave of disappointment… I think now that this must have been a good sign!

The weeks of recovery in the hospital were a blur. I remember being walked down the hospital corridor only hours after I got to the ward and was in my room. It seemed I had a hundred tubes and wires coming from all sorts of places but my parents and I shuffled determinedly down the hall. It became a daily ritual until I built up to four or five strolls each day, someone pushing the poles and machines, while I trudged on.

The physical therapy in this rehab phase was extreme but I was willing to do whatever it took to make this thing work. We all had a goal of getting home to Wilmington before Christmas and we did.

Since then, my life is more than I could have ever dreamed it would be. I became a partner in my real estate appraisal firm, met a wonderful and beautiful girl… a dentist who knowing the risk took a chance on me too and became my wife. We are still here in Wilmington with our two Labradors, and a great little 23-foot Scout named Nine Lives II. We cruise around the marshes, take the dogs for outings on Masonboro Island and enjoy life with our friends and family.

Only months after we got home after the transplant surgery, I took the Boston Whaler I had at that time out into the ocean… it was the perfect day but extremely windy and rough. But it soon became too warm for my shirt, which I pulled off. Still too warm. I stood and dived into the ocean and realized as I was surfacing that I had made a strategic error. The boat had caught the wind in the Bimini top and the current swiftly moved it out of reach. I knew better than to be that foolish. I tried to swim after it but it quickly glided away from me parallel to the beach. I knew not to panic. I treaded water for over an hour. I was four miles out from the beach. I could not even see land. The Whaler was long out of sight by now. I treaded water some more and thought about my dilemma. My only thought was that Dr. Egan was going to kill me for wasting my new lungs by sinking to the bottom of the ocean.

I heard something slapping across the waves. I saw a guy on a windsurfer sailing some fity yards away. I yelled for help. But he could not see me due to the three to four foot waves. I yelled again and saw him heading toward me. He pulled me aboard and we headed back to shore. I seem to be beating the odds again. My boat was retrieved some three miles distance down the beach and Figure Eight Island.

I didn’t tell my parents about this incident for months. When I finally did, there was a long silence, “Dr. Egan would have killed you! Are you kidding? He would have had to stand in line behind your daddy and me!”

I have tried to be an advocate for promoting organ donation and to correspond or talk with anyone who needs any advice or encouragement about cystic fibrosis or transplant surgery. I know how much it means to have someone to turn to when you think no one really understands, and how debilitating and discouraging the disease is. Struggling to breathe is difficult to understand until you’ve been there.

I am still in survivor mode. I have, in the latter part of these past twenty years, pulled through a ruptured appendix where I developed sepsis (“miraculous”, Chapel Hill said) and colon cancer. Am I grateful? More than I can tell you. I am grateful for Dr. Yankaskas for keeping afloat through some pretty dark times in my teen and young adult years. I am grateful to Dr. Egan for his amazing skills in an equally amazing surgery. I am grateful to the generous parents who gave the gift of their son’s lungs in the most devastating circumstances… and gave me a future. I am grateful to my family for their dedication and support, and to my wife, for her loving patience and continued understanding, and mostly for just putting up with me.

Twenty years and I am celebrating my second birthday, and my twentieth year out with a vengeance. They say I am one of the longest surviving double lung transplant recipients in the world… it’s amazing! And my boat named Nine Lives II? I still have the boat and I think I still have a few of those lives life. I thank God for getting me this far.

Howell Graham, 48
Wilmington, North Carolina

Cystic Fibrosis
Double Lung Transplant, October 8, 1990
University of North Carolina Hospitals, Chapel Hill, North Carolina