A change in a patient changed us all

It was another simmering-hot Texas day, and the AC was faltering in the family-practice clinic where I worked as a family nurse practitioner. Most of our clients were poor and spoke only Spanish.

My nurse, Eliza, approached, wide-eyed.

“There’s a new patient — a woman named Maraby. She seems really angry,” she murmured. “She’s the color of Dijon mustard, and she’s wearing a long, heavy wool cape. She looks like she’s nine months pregnant with triplets. There’s a man with her, but he’s not saying anything.”

Gingerly, I entered the exam room. Maraby, a tall woman, sat staring at the floor. Her partner, Darren, stood to one side. When I glanced his way, he anxiously averted his eyes.

Maraby’s skin was a goldenrod hue. I felt my own skin tingling. She was in her early 40s but looked much older. Her hair was scanty, her teeth were short nubs, and her body was emaciated — except for her hugely distended abdomen.

Finally, I broke the silence.

“What brought you in today?” I asked.

She looked up, then glared at me.

“I hate doctors!” she blurted.

An opening! Oh, the relief!

“Well, that’s fine — I’m not one,” I said calmly.

Maraby’s posture softened. Darren apparently saw this as his cue to exit.

“I never would have come here, except that I can’t breathe,” Maraby said. “There’s so much pressure from the fluid in my stomach. When I lie down to sleep, I feel like I’m suffocating.”

Maraby’s appearance told the story all too clearly. Her jaundice, malnutrition and waterlogged abdomen pointed to advanced liver disease, likely due to longstanding alcohol abuse or chronic viral hepatitis.

“We can help you be more comfortable,” I said and listed some steps.

“I’ll think about it,” she said, then agreed to return for another appointment.

At her next visit, Maraby entered the room alone. After a few questions, she agreed to labs and imaging to assess the severity of her liver disease.

When I asked about alcohol, Maraby confessed that she’d once been a heavy drinker. “But I only drank beer!” Over time, as her abdominal swelling had worsened, she’d cut down. She couldn’t eat solid foods; they put too much pressure on her abdomen.

“To slow down your liver disease, would you be willing to let go of alcohol?” I asked.

“Yes,” she said, to my pleased surprise. “I know I can’t undo the damage, but I want to live as long as I can.”

After that, we met every other week. Gradually, I learned more about Maraby and Darren. They’d been together for more than 20 years and had traveled the world, Maraby said proudly. Although neither had an income or profession, they took great care of one another. Maraby mentioned in passing that her mother was a high-powered executive in the Northeast. Maraby, for her own part, considered herself a smart, capable woman leading a fulfilling life.

Maraby seemed to look forward to our visits. Her face softened, and she smiled on occasion. But she remained fiercely private and hyperalert to possible criticism from other patients or clinicians. I became part of an inner circle of staff members who worked to guard Maraby’s privacy and shield her from negative comments.

She responded to our care with ever more trust and warmth. At one point, to my surprise, she told me, “I’m much like you” — a compliment that reflected our deepening bond.

“She’s like a new person,” Eliza said happily.

One day Maraby told me that she’d given up drinking and asked about possible treatments. I felt such tenderness for her; I admired her courage in facing up to her irreversible condition and doing everything possible to improve her health.

She began taking drugs to reduce water retention and prevent hemorrhage. When our gastroenterologist proposed an abdominal tap — a tube inserted to draw off excess fluid — Maraby was immediately interested. He drew off six liters, and she felt immensely better. Once more she could recline (at least partially) and breathe more easily.

“I feel more freedom to move, and that helps me to imagine other possibilities in my life,” she said.

In the coming months, she had several more taps. Although she still couldn’t eat solid foods, her spirits continued to rise, and she felt better about her appearance.

“Would I be able to fly back East with Darren to visit my family?” she asked one day. “We haven’t spoken for a long time, and I really want to get back in touch. My niece is getting married, so I could see my extended family, too.”

“Absolutely!” I replied.

Maraby’s mother was surprised and overjoyed to hear from her, and together, they started making plans for their reunion. Maraby booked her flight and picked out a loose, flowing yellow dress for the wedding. I enjoyed picturing her wearing it.

With her plans in place, she scheduled an abdominal tap for a few days before her flight and met with me beforehand for an exam.

I felt happy to see her so eagerly looking forward to her trip. She radiated hope. She’d always rebuffed physical contact, but when we said goodbye, she allowed me to give her a brief hug.

Several nights later, as a thunderstorm raged overhead, my cell phone rang. It was Darren.

“Maraby is in the ICU,” he said, his voice shaking. “She had a tap two days ago, and yesterday she developed a fever and chills. She’s hooked up to the machines now, with a breathing tube. The doctors say that she’s in septic shock caused by the tap. Her organs are shutting down.”

I rushed to the ICU and found him at Maraby’s bedside.

Intubated but alert, she gazed up at us, her eyes holding a mixture of concentration, fight, and fear. I felt crushed to see her struggling so. When I stroked her hot brow, she winced.

Heartbroken, Darren and I stayed at her bedside, sometimes sharing memories but mostly standing in silence.

Maraby died that night as the skies ripped apart and tumbled with thunder. Tearfully, I recalled her joy as she’d made her plans over the past six months.

A month later, her mother flew out to visit our clinic, hoping to understand Maraby’s dramatic transformation. With Darren in attendance, Eliza and I showed her the room where we’d first met her daughter and told her how much Maraby had meant to us.

“What happened to change her so?” she kept asking. We tried to explain how, although we’d offered Maraby our physical care, support, and encouragement, she herself had held the keys to her own spiritual and emotional renewal.

Despite our efforts, I felt that her mother left wanting more. I hope that, over time, she’s come to see that Maraby just needed a little support in order to embrace a change that was within her.

For me, the most important thing was that Maraby had opened her heart, had once again tasted hope and joy and had reconciled with her family. She’d transformed her life, and we’d been privileged to witness that beautiful blooming.

In my mind’s eye, I will always picture Maraby wearing her flowing yellow dress.

Lisa Burr is a nurse. This piece was originally published in Pulse — voices from the heart of medicine

Image credit: Shutterstock.com

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