|Vol. 25, No. 2||February 1, 2003|
She Proved the Impossible Possible
By PAUL HARASIM
St. Luke’s Episcopal Hospital
Even before the phone rings at her LaPorte home, this night is different for Rebecca Butler Holder. She’s on the couch, instead of in bed with her husband. They had drained the waterbed they’d had for more than a decade, but their new bed has yet to be delivered. As she tries to drift off, she’s alone in the darkness of the living room, unable to lie all the way down because she can’t catch her breath that way, listening to the whir of the life-saving oxygen machine ... listening to herself breathe.
As Rebecca, all 88 pounds of her, fiddles with the oxygen nosepiece that never makes it easy to sleep, the call comes in shortly after midnight. St. Luke’s transplant coordinator Karen Neylor is on the line.
“Rebecca, I don’t want you to panic,” Neylor says, “but we have a heart and lungs for you.”
“You’re kidding, right?” Rebecca says.
She trembles as she hangs up the phone. The day before, doctors said it didn’t appear organs would be available anytime soon. She chews on her purplish bottom lip, the skin color hue she has lived with for four decades because of oxygen deprivation. She walks around the house, 50 feet of oxygen hose trailing behind her, praying out loud. She’s scared. No, petrified. She knows no one who’s had a successful heart and lung transplant. Wayne Holder, alarmed by the fear in his wife’s voice, comes running. So does her 16-year-old son, Ryan.
“I don’t have to take this transplant,” she tells them. “I can wait until the next one.”
“No, you can’t,” her husband says. “You won’t make it if you wait any longer.”
She nearly hyperventilates as thoughts rush through her mind. She tells her husband where the life insurance is, what bills have to be paid, and reminds her son to do his homework and help with the housework.
“Oh, my, I have to take a bath,” she remembers.
It is, she’ll later recall, the fastest bath of her life. Five minutes tops. In her bedroom, she pulls on a pink T-shirt and psychedelic-colored leggings. All the time she’s thinking that this may be it the final day of her life.
“I’ve fought too long to die now,” she tells herself.
Doctors had told her that with her congenital heart defect she should have been stillborn. They told her parents she’d never see the age of 1, that she’d never go to school, or work, or get married, or have a child. Hadn’t she proved the impossible possible? Why can’t she prove it again and forget the transplant?
As she heads back into the bathroom, she knows in her heart she can’t prove the doctors wrong again. Her health has deteriorated so badly that it takes her an entire day to put on clothes and make a meal. Now, she does hyperventilate and she faints. Her husband catches her before she falls on the floor. When she comes to, she calls her minister, Oliver Stillwell, of the First Assembly of God in LaPorte. She asks him to begin praying. Then she holds hands with her husband and son and they pray.
All of a sudden peace washes over her.
“It was amazing what happened during our prayers,” says Rebecca, 42, recalling that night of Oct. 9, 1999.
“I knew everything was going to be all right. I even survived my husband driving like a complete maniac to the hospital.”
Now serving as president of the Heart Exchange Support Group at St. Luke’s, a volunteer organization for those who have undergone, or will undergo, transplants, Rebecca (nobody at St. Luke’s knows her by any other name) was born to a family firmly entrenched in the middle class. Still, her attitude toward life smacked of royalty “I’ll do what I please” almost as soon as she recognized that her skin was purple, the color of royalty.
She refused to be a slave to a medical prognosis or to well-intentioned admonitions based on that prognosis. If she was told not to skate, she skated. If she was told not to dance, she danced. Every time she survived another warning of impending doom, which, it seemed, was often synonymous with a deepening of the color purple in her lips and fingernails, she figured it time to try something new on the “don’t do” list. Nightclubs, she was cautioned, weren’t the kind of place for someone in her condition. So over a cocktail in a smoky nightspot, she met the man she calls Mr. Wonderful, the man who became her husband. Pregnancy, doctors said, was out of the question “you won’t live to see your baby.”
“When you’re supposed to be dead,” she says, smiling and tossing her long brown hair behind her, “you get kind of immune to what doctors tell you.”
SHARING THEIR STORIES
One by one the miracles men and women who are alive only because of organ transplants and the best in medical care walk in the room on the 12th floor of St. Luke’s Episcopal Hospital. It is 10 a.m., time for a weekly meeting of the Heart Exchange Support Group that Rebecca always attends. The miracles tell you that without her kind of lust for life, you probably won’t make it successfully through a transplant.
“Attitude,” says one woman, “is so much of it.”
They have come from jobs, from retirement hangouts. Because others helped them cope with fears and questions, they, too, are reaching out. Seated is a tired-looking man in a t-shirt and shorts. He looks at the miracles, closes his eyes and appears to pray. He’s so sick, he’s been in the hospital for more than two months, waiting for a heart to become available. He tells the group he’s almost forgotten what it’s like outside.
That brings a response from a man married to a lovely woman from Mexico.
“I was in the hospital so long before my transplant,” he says, “that when I got out my dog couldn’t understand English any more.”
Humor helps when lives are on the line.
“My wife wanted to know if I got a female heart whether or not I’d start liking men,” says one grinning gentleman.
“My wife wanted to know if I got a heart from someone Hispanic whether I’d like only Mexican food,” chips in another.
Paula Waller, a St. Luke’s social worker who works with heart, lung and liver transplants, chairs the meeting. She talks about the medication that helps with organ rejection problems, and about LifeGift, an organization that procures organs for the Houston area.
The conversation turns serious. Tears well in many eyes. Some who have received donated organs recall how wonderful it was to finally contact the family of the donor. (All organ donations are kept anonymous unless the donor family agrees to come forward.)
“It made me feel so good to be able to say ‘thank you’ to them,” one man says.
“That’s something I’d like to do, too,” says Rebecca. “I’ve written letters to the donor family, but I have never gotten answers. But I understand how it could be so painful for a family to meet someone who’s alive because of their loved one’s death.”
It wasn’t easy in 1999 for Rebecca to write the donor family. Finally, after tearing up dozens of letters, she sent a note to LifeGift, which forwards notes to donor families.
A lot of prayerful thought has gone into writing this letter. Still, I find it difficult to put into words my feelings. I am so grateful for your part in allowing God to work a miracle in my body through you! There is hope where due to a lifelong illness was despair. Thanks to your gift of life I am able to breathe, walk and talk without gasping. These things most people take for granted. I know your decision could not have been easy, for I have lost close family members and know the pain and emptiness the loss causes. So when I think about you I know you are very special, kind and loving. Daily I am praying for God to hold you close and bring peace and healing to you and your’s!
God Bless You!!!
If there’s one point Rebecca wants to get across to the public, it’s that you can have an organ transplant and live a normal life. The more people who understand that, she believes, the more who will let it be known to their families that they want to give the gift of life should they die. (Relatives of the deceased have to give approval to LifeGift officials or other procurement officers for an organ to be harvested.) Rebecca is convinced people really do want to help others, but too few will sign up as donors until they’re properly educated.
As compelling as Rebecca is on the subject of organ donation allowing normalcy she’s so active in her church, at St. Luke’s, in the schools and in civic work that her husband wants to see her more at home no one can ever accuse her of rushing after a transplant. She wouldn’t even put herself on a transplant list until 1999, nine years after she was advised to. She had quit her clerical job, was largely confined to a wheelchair and needed help to breathe.
“I was pretty much in denial for a long time,” she says, “ I did not want to believe or accept that I needed a transplant.”
Her longtime cardiologist, Paolo Angelini, M.D., of the Texas Heart Institute at St. Luke’s, says she was “born with one of the most complex cases of congenital heart disease I’ve ever seen, but she showed unique capacity to adapt, and reach a livable compromise between the expected normality and the needs of her impaired engine. She managed to avoid palliative surgery, when similar patients would have opted for an intervention. She compensated with an indomitable, unrelenting optimism and great discipline.”
PINK, NOT PURPLE
Actually, nearly a decade before her transplant, when she regularly began in 1990 to cough up blood, there was hope that Denton A. Cooley, M.D., could perform surgery to repair her damaged heart. But on the night before the scheduled operation, Cooley informed her that tests showed she also had high pulmonary artery pressure and her only chance for survival was a heart, double lung transplant. It turned out that the birth of her son, Ryan, which everyone had thought remarkably uncomplicated, had caused a major worsening of Rebecca’s condition.
After the six-hour transplant procedure performed by Scott Scheinin, M.D., with assistance from Igor Gregoric, M.D., Scheinin met with Rebecca’s husband, a pipefitter for Brown & Root.
“I saw this big smile on Dr. Scheinin’s face, and I asked him how it went and he said ‘great,’’’ says Holder. “But then he thought about it and said, ‘No, it went fantastic.’ You don’t how good I felt when he said that.”
As soon as Holder saw his wife, he noticed a change.
“The first thing I told her was, ‘Honey, you’re no longer purple, you’re pink.’”
Over the next few months, Rebecca had to deal with some rejection episodes, but by 2000 she was taking only 16 medicines and was strong enough to throw out the first pitch at an Astros game.
“I thank God every day for the donor family, for the doctors and for St. Luke’s staff,” Rebecca says. “They gave me life. Now I’m thinking about becoming a grandmother one day.”
©2006 Texas Medical Center