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Gift of life

Dianne Barker • Apr 29, 2013 at 9:12 AM

National Donate Life Month in April highlights the critical need for organ donation. According to the United Network for Organ Sharing, which tracks all donation and transplant events in the U.S. Candidates awaiting transplants total 117,849 as of April 15.

For many on the waiting list, it’s a matter of life and death — as one Johnson City woman knows all too well.

About 15 years ago, Jean Renfro was diagnosed with cirrhosis of the liver — an incurable disease often associated with alcoholism. The news stunned the silver-haired, non-drinking grandmother and church pianist, who had enjoyed abundant energy and excellent health all her life.

Spring 1987 brought change. Jean felt so fatigued she could hardly feed herself. Lab tests showed an extremely low platelet count, and a biopsy soon confirmed cirrhosis. Although she learned cirrhosis has several causes including heredity, she felt devastated.

The good news: the disease progressed slowly, and barring unforeseen problems she could live to a good old age.

Jean continued her busy life — bookkeeping for her pharmacist husband Paul, giving their sons Larry and Scott away to lovely wives, and later spoiling her granddaughters. She rarely gave cirrhosis a thought, except in springtime when fatigue swept over her.

After two weeks she returned to normal — enjoying family, helping at the pharmacies, and playing piano at Grace Baptist Church, where Paul served as music director. Music had introduced them.

Born in Kansas City, Mo., Jean grew up in Santa Maria, Calif. Her father, who worked for a moving company, bought an upright piano from a family who had no place for it. Jean began music lessons at 9 and by her teenage years became church pianist.

Paul, born in Johnson City, left college to join the Army. While at Camp Cook, Lompoc, Calif., he led music for a youth revival at Jean’s church. They began dating and discovered more than music in common: both wanted a marriage built on Christian principles.

“My parents loved Paul and gave their blessing to our decision to marry following a six-weeks courtship,” Jean said.

Two days after the wedding, Paul received his discharge, and the couple began a cross-country honeymoon to Johnson City. He finished studies at East Tennessee State University then entered University of Tennessee College of Pharmacy, Memphis. After his graduation they returned to Johnson City and opened his first pharmacy, Corner Drug, and later Princeton Drug and West Towne Pharmacy.

Slowing down never occurred to Jean until one Sunday in November 1997. On Saturday, she and Paul attended granddaughter Hannah’s birthday party at the skating rink. She joined the skating fun and didn’t fall once. Next morning, she didn’t feel well but went to church anyway.

During the afternoon she grew weaker and by bedtime struggled to breathe. Paul drove her to the emergency room where she received oxygen immediately. A chest x-ray showed fluid in the right lung, and other tests identified bacterial pneumonia.

A drainage tube was inserted in her chest, and antibiotics successfully treated the pneumonia. But cirrhosis had caused portal hypertension — elevated pressure in the portal vein (major vessel supplying blood to the liver). The weakened vessel allowed fluid to seep into the chest cavity. Fourteen days later she went home, unable to get out of bed without help. Paul retired in order to care for her, helping her dress each morning and walk to a recliner in the den.

“Sitting in that chair became my life,” Jean recalls. “I’d always enjoyed the Christmas season — decorating, entertaining, playing piano for the choir program — but the holidays passed quietly that year.”

A talc pleurodesis (coating lung cavity with sterile talc to seal weakened areas) didn’t solve the fluid problem. When the drainage tube was removed after 10 weeks to prevent infection, Jean went to the hospital weekly for thoracentesis — needle insertion to remove fluid, about two liters each week. Although she felt so weak that Paul had to support her, she looked forward to the painful procedure that temporarily improved her breathing.

As weeks passed bringing no improvement, her doctor said dreaded words: “You need a new liver.”

She urged Paul, “Don’t tell anyone. It’s too big. I can’t do it. I’ll just sit in that chair.”

It was a weary assignment for a woman with a to-do list.

In that chair she did some thinking: “My granddaughters are only going to remember me in that chair. I can’t hold them or play with them. That’s not living.”

In that chair she did some praying. “Lord, if a transplant is what I have to go through, I can do it with your help.”

After she made the decision, plans came together — evaluation at Vanderbilt University Medical Center and listing on the national organ transplant registry. The hardest phase began: waiting.

“We made as much advance preparation as possible, keeping a checklist of last-minute details. Paul wore a pager; when the call came, we could be on the road in 30 minutes. As liver disease robbed my energy and appetite, I spent my days in that chair, sometimes too weak to talk. I nodded to let Paul know I was OK.”

Sustained mostly by chocolate milkshakes, Jean lost 39 pounds, but her husband wouldn’t let her lose hope.

“He insisted on taking one day at a time, thanking the Lord, and making the best of it,” Jean said. “We laughed. We cried. We faced the reality I might die.”

Observing her deterioration, specialists at Vanderbilt performed a four-and-a-half-hour TIPS procedure (transjugular intrahepatic portal-systemic shunt), eliminating need for thoracentesis.

Jean’s appetite returned, but minimal activity exhausted her. Sitting on a shower stool to bathe and shampoo her hair, she rested an hour before blow-drying her hair and another hour before curling. After setting the table for dinner, she rested again — small progress but encouraging.

Late one summer day in 1998, the phone rang. Vanderbilt’s transplant coordinator often called about medications and lab reports. Jean expected instructions concerning an ultrasound the next week. Hearing “We have your liver!,” she burst into tears.

Sometimes an organ isn’t a good match despite thorough screening. The coordinator cautioned, “Don’t be disappointed if you get here and it’s not your liver.”

“If the Lord says it’s my liver, it’s my liver!,” Jean said, handing the phone to Paul for further instructions.

During the five-hour drive, they talked, cried, sang and prayed — foremost in their hearts, the teenage donor’s family whose compassion in unspeakable heartbreak would impact Jean’s life and several other organ recipients.

Around midnight they reached Vanderbilt, and by 6:45 a.m. the surgery got under way. Five-and-a-half hours later, Jean had a new liver. She spent less than 24 hours in intensive care, and six days after surgery she joined Paul at Vanderbilt Guest House and Inn, returning to the hospital daily for follow-up exams. They expected to be in Nashville a month but went home in 10 days, making weekly visits to Vanderbilt.

Paul cared for her incision (shaped like the Mercedes-Benz insignia), administered medications (25 pills daily including anti-rejection drugs), and recorded everything in a notebook.

Three weeks after surgery, Jean spoke briefly at church to praise the Lord and thank praying friends. The next week she washed dishes and laundry then added cooking, sewing, and other activities until life returned to normal — except for mopping the floor, a permanent restriction.

“I’m glad to have that in black and white,” she said smiling.

Because of the generosity of a heartbroken donor family, Jean has continued living significantly. In 2006 she and Paul celebrated their golden anniversary with a cruise from New York to eight Canadian cities — gift from their sons and their families. Returning to Vanderbilt for annual exams and the reunion picnic for liver-transplant patients reminds her of God’s incredible grace for tough times.

“He’s been so gracious. Paul and I treasure each day and live it gratefully. That perspective has brought us through rough places and given us a message of hope to encourage others facing difficult circumstances: hang on for a miracle.”

Fifteen years ago Jean Renfro received the gift of life, and she remains a strong advocate for organ donation: “Donate life and turn tragedy into hope.”

Dianne Barker, a freelance writer and author, was a writer for the Johnson City Press when it was the Press-Chronicle.

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