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A week of tests adds my name to the transplant list

July 23, 1999

(Editor's note: Denise Troxell is a member of the Sharpsburg town council who underwent a double-lung transplant in 1997. This is one in a series of columns on that event, and her life.)




The city of Pittsburgh sits at the confluence of two broad rivers. As you drive in from the east, train tracks lie like braids along both sides of the Monongahela River as coal humped barges float slowly along like tired swimmers resting on their backs. Ahead of you, a kaleidoscope of glass and steel skyscrapers shoot up in a cluster.

In June, 1995, my father and I turned off into Oakland where the huge main complex of the University of Pittsburgh Medical Center sits like a Buddha on a steep hill in front of Pitt Stadium. Three giant hospitals take up six blocks and are connected by enclosed skywalks over the streets.

If you are from a little town like Sharpsburg, Md., driving into a large city is nerve wracking. When you are driving in for a week of tests that will hopefully find you eligible for a transplant you are just plain scared. Nothing is funny. Everything is urgent.

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Inside UPMC there is such a warren of wings and hallways that when you enter for the first time you are assigned a burgundy vested escort, because alone you would get lost. When you are a patient, you must wait for an escort every time you go for any test or procedure. It's fascinating to listen to them keeping track of each other on their radios. Picture an anthill only give each ant walking shoes and a bed or wheelchair to push.

My father, an engineer, who taught me to read maps when I was 5, figured the place out immediately and knew every secret exit for smoking the first day. We took great pride in not using escorts that week. I took Dad because he would stay calm, be interested in the science involved, and be able to follow everything. Plus he would have my medical power of attorney to make decisions for me if I became incapacitated. He would be my main man.

Facing a transplant is an emotional contemplation. You must deal with imagining the removal of your very own organs to be replaced with the organs of a person who has just died.

You must bet that the surgery will work and prolong your life.You must believe you can survive the long wait and stay sane.

You must change your view of the rest of your life, because it will never be free of medical interference.

Your first test is that first week of evaluation.

We were given a detailed schedule. Being new at the game, we went rushing from appointment to appointment in a panic that we might be late.

Well, I was nervous. Dad doesn't do anything quickly and never worries.

You learn finally that long periods of waiting are the one predictable thing about hospitals. You watch as people get frustrated, and see that it does no good, so you learn to go inside yourself and force calm into your interior.

We made quite a pair, Dad and I. I would always make eye contact and smile at the technician. Dad would start looking at the machines. I would immediately ask if it was going to hurt. Dad would ask how the machine worked.

Just kidding, Dad. He was very good at asking intelligent questions and taking detailed notes in his engineer's precise handwriting. His dry sense of humor helped too.

I was filmed with radioactive isotopes floating through me. I was X-rayed. I was made to walk for six minutes. Heart tests, lung tests, blood tests. I signed papers to participate in several experimental studies.

Finally, on Thursday, I was notified that I had been accepted into the program. One woman that week was put on hold because she wasn't quite sick enough yet. Another was refused because she could not pass the tests.

Re-evaluation is always possible, but my heart breaks for people who are sent too late in their disease to be helped. UPMC takes many of the worst patients because they have so much experience, but they cannot waste organs on someone who won't survive the surgery.

On Friday morning those of us who had joined the program that week met for our orientation. There were two other women, Shila and Nancy, both of whom had been beauticians and had emphysema due to smoking. They each needed a single lung while the doctors decided I needed a double. I did not need a heart because mine had been patched, but today they would not have patched my heart, but given me a heart-lung transplant.

Jan, one of three lung transplant coordinators, went through a detailed description of what to expect. She was intensely direct, almost sharp. Her job was to impress on us how serious a proposition a transplant was. She was and is extremely dedicated to her job. She prepares people for their lung transplant, keeps track of them, and calls them when it's their turn. She also loses people a lot because there aren't enough organs donated.

My wait time would be 18 to 24 months while Nancy and Shila's would be 12 to 18. I ended up waiting 27 months.

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