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Immune system has a different plan

August 06, 1999

(Denise Troxell is a Sharpsburg resident who had a double-lung transplant two years ago. This is another column about that event, and her life.)




I realize now why it has taken me 13 columns to actually get to the story of my double lung transplant. All week I have been avoiding the subject in my head. It's one thing to describe the joyous struggle to live in the world where your senses can usually find something beautiful to distract you from your troubles.

It's another thing entirely to remember and try to describe two months when your body almost gave out and all you could see and hear and touch and smell were the machines that were keeping you alive and the people running them.

I don't like this subject, but it has to be told. People waiting for transplants or any major surgery should understand what can happen, even though it probably won't.

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My memories of waking up after the operation are hazy which is normal after any anesthesia. I remember the nurse saying, "If you will be good now and stop trying to pull your respirator out, I'll take these restraints off of your wrists."

I remember shaking my pointer finger up and down for the longest time at my brother who just couldn't understand I wanted a pencil so I could write messages.

I remember my sister holding my hand.

I remember thinking, "I made it. I made it. I made it."

I don't remember them pulling the respirator out, or sitting up for the first time or walking, but I was taken to a regular room on the third day I believe. I was eating and walking around slowly, trailing long oxygen tubes. I was coughing gingerly and spitting like a man.

My family was there every day. My father had rented two rooms at the nearby Family House, a lovely restored mansion run as a non-profit where patients and families stay.

My sister, Kathie, became especially important to me. She just understood.

Transplant patients aren't allowed to receive flowers because fungi and bacteria breed in the vase water, but I began to get cards and phone calls from relatives and friends.

It was a little difficult to catch my breath when talking. I would have to take a breath in and spew out the sentence. I remember feeling I must sound like Christopher Reeves.

For a double lung transplant, surgeons cut from under one arm down, then straight across just under the breasts and back up under the other arm so they can lift up the rib cage. In a single lung transplant, they cut from the center, around the side and up the back so only one side is disturbed.

I had a swath of bandages, or dressings as the nurses called them, across my rib cage, but very little pain. My whole chest was numb actually, as some nerves had been cut, but it felt heavy and compressed, like I was wearing a very tight metal bra. Move over Madonna.

My vital signs were being constantly monitored and I was enduring breathing treatments every few hours where I had to put on a nose clip and inhale aerosolized medicine for 20 minutes to open my lungs.

On the fifth day I looked across at my sister and just broke into tears crying, "I can't believe I made it. I'm really going to make it." It was such a relief.

Two days later, while taking a breathing treatment with Helen, the kind respiratory therapist, I apparently crashed on my bed unable to breathe. I have no memory of it.

My brother, Rob, says he and his family had come to see me that morning. I was fine. They went to breakfast when Helen came in. When they got back I was gone and my room looked like a hurricane had hit, with papers and tubing all over the floor.

When I couldn't breathe, the doctors came rushing, including Dr. Keenan, the head of the whole program. They worked on me furiously, intubating me (putting me back on the respirator) and then rushing me to intensive care.

Rob was sent to intensive care where he was told I was very bad. He called the rest of my family and they waited for hours before the doctors could say I was stable. I think they were throwing every drug they had at my marauding immune system. My new lungs were being eaten alive by my white celled army.

I was suffering a Grade 4 rejection. Lung rejection grades go from 1 to 4, with 4 being the worst.

Understand one important thing about transplantation. Almost everyone rejects. It is your body's natural reaction to being invaded by the new organ, a foreign body. It means your immune system is working. Expect it.

The vast majority of people only have Grade 1 or 2 rejections. They feel a little sick, the doctors give more rejection medicine which impairs their immune system and they recover. Finding each patient's proper dose of medication to protect the new organ yet leave some immunity to infections is one of the arts of transplantation.

Each patient is different, although there are some test predictors. My tests had predicted I would do well, but my stubborn immune system had a different plan. It had kept me incredibly healthy all my life and this was the biggest challenge it had ever faced. It was war, and like brainwashed soldiers, my white blood cells didn't care if they destroyed the country to win.

They almost did.

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