Part 1- Waiting for a donors gift

Marcia's Story | home

Part 1- Waiting for a donors gift | Part 2 - Transplant Day | Part 3 - Organs offer new hope | Part 4 - A testament to faith

With her last hope resting on a rare transplant operation,

Marcia Roenigk longs for the gift of a lifetime.

Photo by Lisa Nipp

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A heart of faith, a plea for life

Story by Sylvia Slaughter

She slowly walks from her hospital bed to her chair and sinks down.

So few steps take so much effort and cause so much exhaustion. Walking wears her out. Talking wears her out. Waiting wears her out. Marcia's destiny is one of two extremes: either a life-saving heart-lung transplant or certain death.

For the worn-down woman in Room 7029 at Vanderbilt University Medical Center, time would serve as the executioner. Donor organs don't come on command. There are no little jars sitting in a lab that's stockpiled with donor hearts and lungs.

"There's no pointing and saying, 'I'll take that one,' " Marcia says. "No ordering hearts and lungs from a Lands' End catalog." Marcia isn't being glib.

She knows that to live she must wait for a stranger's last legacy, the gift of life with no strings attached.

"I came here to be transplanted or to die," Marcia says simply.

She's already made out her will, "just in case."

"I'm not afraid of the transplant," Marcia says. "I'm sick and tired of being sick and tired."

Her energy level is so low that she does little more than leaf through magazines, e-mail family and friends, watch TV, visit with other transplant candidates, walk the doctor-mandated laps around the nurses' station -- when she has the strength -- and study her Bible.

Her faith in God is the core of her calm. She even listens to sermons on tape: "You can fall asleep and no one knows," she teases.

Some days she does nothing. "I lie in bed and pray for the energy to turn over."

Sometimes, especially when Marcia is alone in her small room on the seventh floor of the hospital, the seconds seem like hours and the hours seem like eternity. On this day in mid-February, she has been hospitalized for three weeks. Three long weeks. Her health is declining.

"I had three really bad days in a row at home," she says. "I couldn't breathe and my oxygen didn't help. The doctors told me it was time to move to the hospital."

She came, lock, stock and lipstick.

On her better days, she pops in her contacts and puts on her makeup.

But those days are dwindling.

Waiting for someone to die so she can live sometimes steals from her stamina, but not her resolve. "God willing, I will live," she says.

And, God willing, she will endure the clock's crawl.

Marcia believes the wait -- nerve-wracking as it sometimes is -- is for a reason.

"God has a plan," she says. "I just don't know what it is."

At times, though, she balks: "I want to go home. I don't want to be tethered to oxygen and IVs. I want to go home with healthy, new lungs and a healthy, new heart."

Marcia knows that her wish might not be granted.

Already, she has met people at the transplant clinic and on the Internet whose time eventually ran out. They died before donor organs could be obtained.

She fears her friend Deborah Thomas, of Knoxville, might become one of them. Deborah has been in the hospital for six months waiting for a heart transplant.

On another morning, now in late February, on a day when the wait is easier, Marcia wears a T-shirt that reflects her sass: "Organ donors do it with total strangers."

Marcia and her husband, Bob, designed the T-shirt, which makes the nurses chuckle.

"I want to laugh," Marcia says. "I want others to laugh, too. ... I want to live. Oh, how I want to live. But I might not. That's a scary thought that I sometimes think about, but I don't get the heebie-jeebies very often."

Marcia has accepted her fate:

If she lives, she will lobby adamantly for organ donation.

If she dies, she believes God has prepared a place for her.

If she continues to wait indefinitely for a new heart and lungs, she guesses she will survive watching 3rd Rock from the Sun a few more times.

"Or maybe I will design some other T-shirts," she says as she slips under the blanket on her hospital bed, revealing that even her high spirits wear her out.

She falls asleep cuddling a stuffed moose.

Marcia Roenigk, 40, moved to Nashville from Sugar Land, Texas, in 1997. She wanted to shorten the commute when the call came that donor organs were available.

But time's tyranny is not on Marcia's mind one morning shortly after Valentine's Day. Roses are.

Robert Roenigk had filled every spare vase, every spare bowl and every spare Styrofoam cup he could find at VUMC with roses.

The nurses gape at the sheer magnitude.

And at the romance the roses bring to the hospital environment.

Bob doesn't know how many dozens of roses are in the room. There are too many to count. But he does know their weight. "Five pounds worth," he says. "At least, I paid the delivery man for a 5-pound package."

Bob had the roses shipped from Texas.

The roses brighten up the hospital room; a room with a window, but a room "decorated" by a doctor. Oxygen tanks and monitors and tubes are connected to Marcia. They are her lifelines. Aesthetics don't exactly count now. A husband's love does, though.

Marcia was born with a hole in her heart. It led to Eisenmenger's syndrome, a complex condition that eventually left her with a heart and lungs incapable of providing her body with enough oxygen to survive.

The only option is a heart-lung transplant.

The first time her family noticed any side-effects from her congenital defect was when she was 5 or so.

They found Marcia on the porch, red-faced and gasping for breath.

The doctors told her family then that she should get plenty of rest, but to let her lead an otherwise normal life.

In high school, Marcia played the flute but wasn't allowed to join the marching band.

In college, she played racquetball ... in short sessions.

After graduation, she set up a successful photography studio, but failing health forced her into early retirement in 1995 ... at the age of 36.

"I worked longer than I should have," she says. "Those camera bags grew too heavy. I had too many bad days and had to postpone too many appointments."

She had Bob, too, who told Marcia, "Just quit." He wanted her healthy.

Marcia never fretted much about her health until her doctors told her about 10 years ago she eventually would need a heart-lung transplant.

"I thought, 'OK. When I'm 50, I'll think about it.' I had too much to do. I wanted to find someone, fall in love and get married."

She bought her wedding shoes long before she met the man she would marry.

Marcia met Bob on a blind date in October of '91. He sent her flowers after their second date. Soon, she was head over heels.

"Marcia used to say she could tell what a guy was like by the shoes he wore," longtime Texas friend Faith Werner recalls. "I asked her after she'd been out with Bob a few times, 'So what about his shoes?' Marcia said she wasn't real thrilled with them, but I knew he was the one when she added, 'He can always change his shoes.' "

Marcia and Bob became engaged in April of '92 and were married that August.

"I popped the answer," Marcia says. "I said, 'All right, we're getting married.' "

Months before the day they said their vows, outdoors, under the oak trees at the Baptist church Marcia attended, Bob knew that Marcia would someday need a transplant.

He took her condition seriously.

When he and Marcia underwent premarital counseling, her pastor asked Bob if he could change one thing about Marcia, what would it be.

Bob's answer: "I would change her old heart into a new heart."

Marcia needs the new heart -- and lungs -- and soon.

It's now early March, and when she looks into the hospital mirror, she sees a woman who always has had blue lips, blue fingertips and blue toes staring back at her with bluer lips, bluer fingertips and bluer toes. Even her skin has a bluish tinge.

The "blue" is evidence of her oxygen deprivation.

Later this day, she lifts her fingers up off her hospital bed and teases, "My nails just go in and out of style, don't they? I mean, the kids have polished their nails blue and I get mine naturally."

A day later, Marcia is more fatigued than usual. The ever-present oxygen tubes in her nose and the life-sustaining fluids that drip into her body from her IV pole can't help that.

Yet, she maintains her sense of humor. Attached to her IV pole is a Dr Pepper can; empty, of course, but masquerading as a drip bag.

Jerry Phillips, who arrived on the unit as a heart-transplant candidate after Marcia did, forges a fast friendship with her and Bob. He looks at Marcia's IV pole, then at his.

A few days later, he follows Marcia's lead and personalizes his pole.

A resident of North Little Rock, Ark., and an avid Razorback fan, he dangles little pigs from his pole.

"Marcia, I don't want a Tennessee heart," Jerry teases one afternoon. "I want an Arkansas heart."

Marcia replies that she wants a Texan's heart and lungs.

In reality, an organ's "statehood" isn't important to Marcia. She would settle for any heart and lungs that Dr. Richard N. Pierson III, her transplant surgeon, finds fit.

Marcia's transplant coordinators have told her that most likely her organs would come from Tennessee, but that they could come from almost anywhere in the United States.

"Finding a match isn't easy," Pierson says. "Recipients need the blood type and the tissue type of the donor, and donor organs must be comparable in size to the recipient's."

If Marcia survives through transplantation, she would be the first heart-lung recipient at Vanderbilt in more than three years. Heart-lung transplants are rather rare. Only 45 were performed across the country last year out of 17,820 total organ transplants.

Marcia chose Vanderbilt partially because she and Bob wanted her surgery to take place in the South, but primarily because Vanderbilt's transplant program has a high success rate: The overall survival rate from Vanderbilt's transplant program is more than one-third higher than the national average.

Marcia and Bob spent months researching transplant programs and were impressed with the doctors they encountered at Vanderbilt. Pierson, E. Wesley Ely and James E. Loyd would be major players in her transplant ... if she gets it.

"Every woman needs a Bob," Marcia says one morning in mid-March as she thumbs through a gardening magazine while a nurse takes her vital signs.

But she adds, laughing, "You have to be careful what you ask Robert Roenigk for. I asked him for a rose garden and he built me a rose farm."

Marcia hadn't seen the farm since she and Bob moved to Nashville on March 28, 1997. She is too fatigued, even to fly. Plus, she can't venture too far afield from Vanderbilt ... the hospital courtyard, and no farther.

The hospital could call her with the organs at any time, day or night. She wants to be there johnny-on-the-spot. After all, the hoped-for organs are why she is here, 800 miles away from blood family and church family and longtime friends.

Bob, a consultant who owns his own business, can work just about anywhere with his laptop computer.

"I have a very portable job," he says. "I'm one of the lucky ones. I didn't have to quit my job to get Marcia to Vanderbilt, but I would have ... in a heartbeat."

Many nights when Marcia doesn't feel well, Bob works on his computer by her bedside, instead of in his office at their downtown apartment. Often, he works at the hospital and then goes home and works until the wee hours of the morning.

He visits the hospital every day from late-afternoon until visiting hours are over and often brings the couple's two cats, Mikhail and Nikita, to see Marcia.

One night, when he is bringing in the cats, a visitor in the front lobby tells him that pets aren't allowed in the hospital.

Bob tells her that he is taking them "to the pet hospital, on the 12th floor."

Of course, VUMC has neither a pet hospital nor a 12th floor. Marcia, Bob says, has taught him to have a sense of humor, too.

When Bob isn't working, he is formulating plans for the rose farm.

When Marcia is able, she helps with the design of the new home Bob is building for them on the farm. Like the rose gardens, she hasn't seen the home, except in pictures and on video.

Bob and Marcia are both master gardeners. "Bob wants to be a farmer when he grows up," Marcia teases.

When he feels Marcia is stable enough, or when family or friends are visiting them, Bob flies to Needville, Texas, where their farm is, and oversees work on the house and the gardens.

The Roenigks plan to grow and sell roses and open display gardens for the public to tour.

Marcia hasn't seen even a thimble full of Texas soil since she and Bob moved to Tennessee. They left behind their home state, with Bob pulling a trailer containing some of their possessions. Marcia's and Bob's moms caravanned behind the trailer.

The couple made the journey carrying six large tanks of oxygen in the car trunk, a concentrator that turns room air into 97% pure oxygen and a basket full of moose mementos. Marcia collects them because "Moose" is her childhood nickname.

Throughout her hospital stay, when Marcia is too ill to talk much, Bob sits quietly on her bed.

When she is restless, he fields her phone calls.

When she is feeling really down, he massages her feet.

He monitors her medications as closely as the nurses do.

"As her husband, as the man who loves her more than life itself, I just want to keep her spirits up and her frustration down and let her know that we will get through this together," Bob says.

Bob, the couple's friends say, has always been highly intelligent and somewhat of a maverick.

When he was only 16, he loaned his older sisters money to buy cars. While his young buddies were doing wheelies with their bikes, he worked his first job, performing magic tricks.

"I don't see how I could have made it this far without him," Marcia says.

Bob believes Marcia will be a miracle.

"Marcia is in God's hands," he says. "I love her very much, and God knows that. I've learned to pray, 'not my will, but His will,' though. Marcia and I don't see how a person not grounded in God could get through a transplant."

Marcia has her own way of getting through some of these darkest hours.

When the night is pitch black, her breath shallow, her chest hurting, her feet swollen and her soul sagging, she prays her favorite prayer, a verse from the book of Joshua, in the Old Testament: "Be strong and of good courage; be not afraid."

Marcia believes God grants her prayer every day. For she is not afraid. Neither of living nor of dying. "And I believe in living even if you are dying," she says.

After moving to Nashville but before she was confined to the hospital, Marcia and Bob attended First Baptist Church Nashville.

Her Sunday school class gave Marcia a laptop to use in the hospital. It's one she will leave behind for another transplant patient.

With it, Marcia keeps up with all her friends. Her Internet e-mail address is telling: breathless@bellsouth.net.

Throughout Marcia's hospitalization, Sunday school class members who have become friends with the Roenigks carry comfort in casseroles and pasta in plastics to Vanderbilt.

Richard and Rhonda Demonbreun are among the faithful.

When Bob and Marcia first came to town, the Demonbreuns had them over for swimming and dinners. Later, when Marcia was too weak to walk, she and Rhonda toured art fairs and shopped together; one on two feet, the other in a wheelchair.

"Not only do my children love the Roenigks," Rhonda says, "but my dog does, too."

Before Marcia became so ill, she and Bob traveled. Their most memorable trip was a prelude to the health problems that would further limit Marcia's activities.

At a dude ranch in Telluride, Colo., Marcia frantically tried to inhale enough of the thin air, but couldn't, passed out and fell off her horse.

The ranchers quickly rushed her to the hospital, where they called her cardiologist.

"He told me to get back to sea level as quick as I could," Marcia says. "I learned my lesson. No more high altitudes until I get my new heart and lungs. No more fun travel."

There is only one highway, byway or skyway Marcia wants to travel now: Interstate 40 West, bound for Texas.

When Marcia, awaiting her transplant, checked into Vanderbilt in February, she held on to hope: hope that the team would get her organs transplanted long before June 26, when she was to be a bridesmaid at her best friend's wedding.

Jan Brown of Houston had been a bridesmaid in Marcia's wedding seven years ago.

If Marcia doesn't make it to Jan's wedding, Jan vows she will have Marcia there by proxy.

"I'll have Moose's picture out on the table during the reception and, during the ceremony, I'll do the cell-phone thing so she can hear every word that is spoken."

Marcia aches to attend the wedding this summer, to see her best friend, to see her family and to see Texas.

She and Bob thought they would be in Nashville only six months, then Marcia would be transplanted and they would be back home. Two years have passed and neither has happened.

But she did have a close call. One time she was prepped for surgery only to find out that the heart and lungs were unsuitable.

That was a little more than a year ago. She and Bob were at their apartment when the hospital called with a request for them to rush over because they thought they had found her suitable donor organs.

At 11 o'clock in the evening, Dr. Pierson stopped by her room and asked if she was ready for the big showdown.

"Of course I was," Marcia says.

When the Vanderbilt organ procurement team scrutinized the organs, however, they refused them because the donor had a fungus in his windpipe.

Marcia says she wasn't at all disappointed by the setback: "At least I knew the hospital hadn't forgotten me," she jests.

In late February, Marcia tossed out her Valentine's Day roses, all 5 pounds of them.

Her room now seems bare. She needs something to boost her spirits.

On March 12, she gets it.

Marcia has improved enough to be moved to the "Round Wing," a unit on the hospital campus that grants her more independence.

There, she is told, she can do crafts in a community room.

Marcia welcomes the move, but hates to leave the nurses she has grown so attached to on the seventh floor of cardiac care.

The nurses dread to see Marcia go, though they are happy she is stronger.

Two of the nurses from the seventh floor know that Marcia is particularly attached to a painting of a bouquet of flowers in her old room.

They smuggle the painting out of the unit and into Marcia's new room.

As they turn to leave, Kim Schafer hugs Marcia, blinks back the tears and says, "Hey, Marcia, if you need anything, just call me. I'll be at 1-800-BABE."

The move is on one of Marcia's better days. Her breath comes easier.

When her new nurse does her intake history, Marcia and Bob pull her leg.

Nurse: Do you live with him?

Bob: Not lately.

Nurse: Any children?

Marcia: Two. Cats.

Nurse: Do you read and write effectively?

Marcia: Not Russian.

The nurse leaves the room, laughing. "Nice to have a live wire," she says. "She's so sick, yet she's so sparkly."

After being hospitalized for 69 days, the transplant team doctors offer Marcia a reprieve: She has stabilized enough to return to her apartment to await her donor organs.

Marcia is eager to see the rose bushes in bloom outside her apartment window, the rose bushes that she and Bob had brought with them from their rose farm on that long-ago drive from Texas to Tennessee.

Apartment bound, Bob packs up the car, fitting in dozens of flowers their friends have sent.

Marcia's mom, Evelyn Hardin, has come to visit the couple, which makes waiting at the apartment even more inviting. Mother and daughter would have time for hometown catch-up.

When Bob pushes Marcia out to the car in a wheelchair, there is a gleam in her eye.

First, she wants to see the cats and the roses, then she wants to eat something totally unrelated to hospital food, something special her mom would fix.

Hospital food is so predictable, Marcia says. "You know. Fried catfish on Monday, every Monday; cold cuts on Tuesday, every Tuesday."

Another thing excites her about leaving the hospital. At the apartment she won't have to sleep with earplugs in her ears to lock out the noises of the night.

"Hospitals aren't the quietest places in the world," she says.

She and Bob drive away from the hospital in their car, a car that bears a bumper sticker that reflects their constant plea: "Don't take your organs to heaven ... heaven knows we need them here."

Included in their universal plea is their private prayer. A prayer for one beating heart and two working lungs. God willing.