Free at last: a short story about heart transplantation

I am posting this story about a patient I took care of while I was at Stanford University, where heart transplantation was first performed in humans. I am posting this as a follow up to my previous posting about Hannah Jones, the 13 year old girl in England who turned down a heart transplant due to a failing heart from the side effects of chemotherapy (Major minor: children's right to chose).

Free at last

Snip. She cut another paisley triangle, neatly stacking it next to the calico squares. “It keeps me busy,” she explained as I walked in to glance at the monitor. “I’m making a quilt for my first grandchild born just last week. I haven’t seen him yet.” She looked at her son, up at the monitor, then at me. It was almost midnight and I had come in to check on Luke before midnight rounds. His blood pressure was still too low but hadn’t changed in the last few hours. Not better, not worse; stably unstable. This oxymoron made sense in my world. It just did.

The last of eight children, he was the baby, the tall, pale one who always stood next to his mother in family pictures. He needed a heart and double lung transplant to survive. They had come from a small town in Nebraska to free him from a life of illness. When he was transplanted, Luke’s mother was ecstatic. But her joy lay in the sadness of others—she knew what had to happen for her son to have received a “donated” heart—and that troubled her. She saw two teenagers who had received hearts around the same time as Luke leave the ICU after a few days while her son languished here for weeks. Her sadness lay in the joy of others and that troubled her too—but to that she’d never admit.

It had been a rocky course from the beginning for Luke. His kidneys shut down from low blood pressure and infections. He was hooked up to a dialysis machine on his second day back from the operation. He was extubated, re-intubated, re-extubated, and intubated over and over again with a breathing tube because he was not even strong enough to breathe on his own and have his heart pump at the same time. Then he became infected again with God-knows-what. It wasn’t responding to any class of antibiotic we had on hand.

“We want everything done. But we don’t want him to suffer.” His mother would say to me. At this point, they were mutually exclusive requests, but that made sense in her world. It just did.

She and her husband came to learn our lingo and could infer a lot from the monitors and my face without us needing to utter words. They learned the semiotics of a raised eyebrow and stroked beard with and without cocked head. A glance at the vitals flow sheet with a “humph” was the most intolerable and I found a brief commentary to be de rigueur to put them at ease.

With each successive week, we spoke less and less about monitors and medications. Instead, at their request, we started talking basic physiology. I found myself explaining nine years of medical education in 15 minute sermons using metaphors of pipes, pumps and flowers. Then, our conversations became personal. I was seeing them more than my own wife and children and they hadn’t seen their other seven children or parishioners in weeks. We were both working shifts in order to take care of Luke. They alternated six hours on, six hours off at the bedside. As for myself, I was doing thirty hours on, eighteen hours off.

Setting her scissors down, she began to tell me how difficult it had been to raise eight children and be a minister’s wife. It was a life of sacrifice and she was content to live it only because she saw it as God’s will. It was a life lived in denial of comfort or privacy. She could never call her husband her own because he was wedded to his parish too. I laughed and told her that a physician’s wife had it no better.

The whirring of the dialysis machine filled a momentary silence; then she continued.

“I miss my home so badly, doctor. I miss having just one moment of privacy. Once, last week, I just wanted to go somewhere and cry. All the sleep rooms were occupied, someone was in the bathroom, and the family lounge was full of people. My husband came up to me and put a blanket over our heads and said, ‘Here’s our private space.’ And I cried until I couldn’t cry any more.”

Our conversation drifted to religion and she began complaining about those “liberal Christians”. I wondered if she knew or cared that I was Muslim. It didn’t matter to me either way. She was a mother. I was a father. That was commonalty enough for me. Birth has no creed, illness has no dogma, and sorrow is the universal paean of death.

She gathered up the strips of clothe and turned to me like a school girl at penance. “Doctor, I feel that Luke is suffering. I feel that he’s trapped in there. We thought that this transplant would free him from a life of constantly being ill.” I found myself playing minister and counseled her to be patient, saying “It will, it will.”

The next morning, considering Luke’s condition and his parent’s concern for his suffering, the decision was made to de-escalate care, a euphemism for “pulling the plug”. Curtains drawn, the door was closed and the cacophony of the ICU gave way to a heavy silence. One by one the machines were turned off until the whirs and beeps were replaced by whimpers and sighs. The breathing tube was removed. The pressure medicines stopped. Heavily sedated, Luke lay in a state between two states. Like snow drifting in a waning December wind, he laid somewhere between heaven and earth. After 18 years of suffering, 2 weeks of waiting, 3 weeks of struggle and 4 minutes of peace, it was over.

Bereft of clerical counsel, I hugged the reverend, letting the tears fall from his face unto my shoulder. Consoling his mother I said, “The suffering’s over. He’s free. Free at last.”