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Waiting for the call

August 03, 1999

(Editor's note: Denise Troxell is a member of the Sharpsburg Town Council who underwent a double-lung transplant two years ago. This is another in a series of columns about that event, and her life.)




While it is a great relief to make the transplant list, to have doctors tell you they think they can save your life, it also brings into your life a singular anxiety. When will you get the call?

In most transplants, the patient is graded by severity of their condition, so that when they reach the worst grade they know they can be called any time.

In lung transplants however, patients are put on the list according to when they were signed up because there are so many different lung diseases that severity of condition is hard to judge. On the national computer at UNOS, the federal government's United Network for Organ Sharing, their Social Security number is listed with a date and time down to the second when they were registered. This is why it is especially important for lung transplant patients to be signed up early enough by their doctors.

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When donor lungs are given by a compassionate family, the computer goes to the nearest region's corresponding blood type list and gives them to the first person on the list who is almost the same height as the donor. Height is important so the lungs can fit into the chest cavity.

As I write this, I know there are people who are desperately hoping for a phone call tonight because they aren't sure they will live through another day of suffering. For most lung transplant patients it becomes a simple matter of being able to breathe. They are on oxygen and almost immobile because they just can't breathe. Some are waiting in hospitals on machines.

My case was different. I was never on oxygen. I was driving my car up until the time I was called to transplant. I looked awful and there were many nights during the last few months when I wasn't sure I would wake up, but I wasn't struggling for each breath.

I could hear my heart beating like two sandpaper blocks being slapped together when I lay down at night on my piled up pillows. I couldn't lie flat. I couldn't enjoy a regular-sized meal because my liver and abdomen were enlarged with fluid my heart could no longer pump away. I was wearing loose dresses because I couldn't breathe with anything around my waist. My face looked gray and haggard.

But I was getting through each day. Slowly.

Mentally I was assuming I would die. I was sorting my possessions, making lists of what should go where if I didn't make it. I was writing letters to my sons and my family. I thought about my funeral and tried to plan it but never coherently got around to it.

I could not imagine how I would get through the phone call and the hours before the surgery. I was scared and sad sometimes, looking at everyone and everything so intensely, to get one last look. I couldn't understand how this could be happening to me.

At the same time, I absolutely refused to give up and feel like my life had been ruined. I just wouldn't let my mind go there. I felt almost like it was a challenge for my soul and I was determined to win. Darkness cannot go where there is light or some such nonsense, but it worked most of the time.

If I was going to die, I would do it well.

The phone call came at 9 p.m. on May 19, 1997 after 27 months of waiting.

It was the night before I was to go to Pittsburgh for my third annual eligibility checkup. I was sitting at the kitchen table, paying bills.

Wendy, a transplant coordinator said, "Are you feeling lucky?"

I started shaking. She told me to call my air service and to have them call her back with an arrival time. I called the beeper number I had set up with Aero-Smith the year before, but had trouble getting through for several panic-stricken minutes. Then they had trouble finding a pilot for several more. He came all the way from Bedford, Pa. in his very fancy airplane. There were storms around and no guarantees we wouldn't have to turn back. What a kind hero.

I had to be in Pittsburgh within three hours. While my father and friends came to take us to Washington County Airport, I made a few phone calls to my sister and brothers and best friends. My voice was a mess. "I'm going. It's now. I love you." What can one say? It would take them four hours to get there by car. I would be in surgery by then.

We arrived at the dark and windy airport. The pilot looked like the Marlboro Man in a tweed blazer and khakis. He was so handsome and strong and determined to get us there.

The plane was plush inside with couches and carpeting. Dad crammed into the co-pilot's seat and Sean and Alec sat right behind them watching the instruments, fascinated.

I sat in back in the dark looking out the window at the stars and lights far below. I was feeling lighter and lighter and so blessed that I was full of gentle smiles even as tears rolled down my face.

I was floating above the world, watching all the little lives down there, and I knew whatever happened everything would be good.

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