Part 3 - Organs offer new hope

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

After the operation, emotions waver between anguish

and astonishment.

Photo by Lisa Nipp

More Photos

Awakening to a new life

Story by Sylvia Slaughter

On Sunday, April 11, Marcia Roenigk lies cold and motionless in the surgical intensive care unit at Vanderbilt University Medical Center.

Her chest cavity is covered by a sterile towel and sealed with a Saran Wraplike substance that adheres to her skin.

Her new heart and lungs work in unison only a loin cloth away from the naked eye. Because of complications with her transplanted heart during her surgery, Marcia's doctor chose not to "close" her immediately after the procedure.

Now, early Monday, a day and a half after her heart-lung transplant, Dr. Richard N. Pierson III takes Marcia back into the operating room, wires her chest bone together and sutures her.

"I came to the hospital early, but Dr. Pierson was earlier," Bob says. "Pretty soon, Marcia will be waking up. ... I just want to see her. I want her to see me."

Marcia's mom wants to see her, too. The night before she slept on the floor in the surgical intensive care waiting room. "I just want to be here," Evelyn Hardin says. "I can't rest if I'm away from the hospital. That's the way it's been for as long as Moose has been sick."

Marcia's family and friends joke that her transplant just might be the longest surgery in the history of the hospital if the operation were measured from first incision to final closure ... some 44 or so hours.

By Monday afternoon, Marcia begins to wake up from a drug-induced sleep.

She signals her mother, Evelyn, by wagging her feet at her during a brief visit.

Evelyn runs from the room to tell Bob, who flies up the stairs from the waiting room to his wife in the Surgical Intensive Care Unit. The elevator is too slow. He resorts to the stairs, three at a time.

After he washes his hands in the antiseptic soap in the dispenser outside Marcia's door, Bob rushes in. He takes Marcia's hand. She squeezes his.

Robert Roenigk struggles for composure.

The moment is so intimate that even Marcia's around-the-clock nurses turn their heads.

Still on a ventilator, Marcia can't talk, but she manages to mouth a silent message: "I love you."

Her hand in her husband's, Marcia drifts off to sleep.

She looks puffy, swollen and pale, but at peace.

Later, a grin crosses her face when Bob tells her that her organs are working and that the doctors consider her surgery a success.

Marcia fights against sleep. She's too excited.

Bob and Evelyn and Marcia's sister, Susie Aghili, leave SICU.

Throughout the day and into the night, their visits are brief.

They must not tire Marcia.

In her drug-induced haze in SICU, Marcia has strange dreams.

She dreams that Bob, a button-down conservative, has had his hip tattooed with three red hearts. She dreams that Susie, who lives in Dubai in the United Arab Emirates, has bypassed Texas to move to North Carolina. She dreams that stone and mortar close in on her.

She tells her family of the dreams later, when she's able to talk.

They were not dreams, Marcia says: "They were nightmares."

For days, Marcia makes a remarkable recovery, though she looks frightful.

Her face and body are swollen almost beyond recognition and she can't focus her eyes.

But Bob and Evelyn and Susie notice another distinctive difference in Marcia. She's "pink," a telltale indication that her heart and lungs are working.

Every visitor to the SICU waiting room is greeted with a color-coded commentary.

"She's so pretty and pink," Susie tells folks who come by the hospital to get daily, and sometimes, hourly updates.

"She's so pretty and so pink and she used to be so blue."

Later, when Marcia gets better and is moved from SICU, she herself wants visitors to note her pink fingers, her pink toes and her pink lips, her testimony to the miracle of transplantation.

Holding on amid fears of rejection

Continued from page 1

Before Marcia graduates from SICU to the medical intensive care unit, Bob e-mails their friends that because Marcia is on the early side of the recovery time line, the doctors have told him that she could have a serious setback at any time because organ transplants are still so unpredictable.

Just as feared, Marcia has a setback shortly after she's moved to MICU.

Tests show that there is an indeterminate and unexplainable amount of fluid around her lungs.

The doctors fear early rejection, believing Marcia's body may be turning against the unfamiliar organs in spite of the immunosuppressive drugs to keep that from happening.

Many transplant recipients experience episodes of rejection between the fourth and sixth weeks following an operation. They're treated with heavy doses of steroids and generally get well quickly.

But this is unusual.

Further tests determine that Marcia isn't rejecting her organs. Instead, she has developed a bacterial infection. It poses little harm to healthy people, but could be fatal to other transplant patients on the unit because their immune systems are made fragile by the drugs they will take for the rest of their lives.

Because doctors have isolated and can aggressively treat the infection, Marcia, for now, is not in further danger.

Everyone entering Marcia's room must wear scrubs, gloves and masks so they don't spread the bacteria throughout the unit. After the bacteria scare is finally resolved, doctors send Marcia home to her Nashville apartment. It's April 21, just 11 days after her transplant.

"Doctors want immunosuppressed persons out of the hospital and away from sick people as soon as possible," Bob says.

Marcia thrills at the prospect of going home.

On the way home from the hospital, a truck slams into Bob's fender on Marcia's side of the car.

Sirens wail.

Marcia is slightly rattled, she runs out of oxygen and Bob insists that emergency paramedics examine her.

The medical personnel want Marcia to return to the hospital because her blood pressure is higher than normal.

"That was due to the excitement," Marcia says once she reaches her home. "There was no way I was going back to the hospital. I mean, I just got out!"

At home, Marcia mends quickly and follows her doctors' orders.

Whenever she goes out into a crowd, she wears a mask. A common cold can kill her this soon after transplant.

Every day she takes 20 or more pills, ranging from vitamins to immunosuppressive medications, including cyclosporine and prednisone.

Some of the medications are paid for by Medicare disability, just as much of her approximately $150,000 surgery will be. There are, however, reams of ancillary bills that Bob and Marcia must sort through.

Every other day, she must work out at VUMC's Kim Dayani Center to rebuild her strength.

And her strength returns quickly.

She and Bob go boating with friends. They walk up and down hills in their neighborhood. They go to church.

Marcia learns the art of dodging handshakes because she knows that hands carry germs.

"I make certain everyone who comes by doesn't have so much as a sniffle," Bob says. "Marcia can't afford to get sick. She's come too far and fought too hard to live."

On May 10, exactly one month after her heart-lung transplant at VUMC, Marcia Roenigk weighs 108 pounds. "My wedding weight," she muses.

Her weight had dropped to about 102 pounds at its lowest. Though only 6 pounds less, it was too low for her condition. Her swelling is gone, but a slight amount of fuzz appears on her face from some of the many medications she must take.

Transplant team members have warned that some of her medications may cause a "moon" face.

Marcia doesn't have one. And she's thankful. Bob won't mind if she develops one, though. Her character exceeds what he calls "the cosmetic."

While Marcia was in the SICU, he gently chided some of her friends who were discussing the neckline of the dress Marcia was planning to wear in her best friend's wedding in late June.

"You women worry about a little scar maybe showing when life and death are the real issues," he had said, laughing.

Marcia makes weekly visits to the lung-transplant clinic at Vanderbilt.

One morning, she quips that she came to the clinic "X-ray ready": no bra.

But Marcia is concerned about this trip, a month after her transplant.

If the transplant doctors find that her latest set of X-rays reveal more fluid around her lungs than the set she had taken the previous week, they will probably order a bronchoscopy, an uncomfortable procedure that biopsies the lungs and one she dreads.

Doctors are looking for signs of rejection. Undetected rejection is a transplant patient's biggest concern.

Bob aligns both sets of X-rays, new atop the old, using the sternum wires that hold her chest bone together, as guides.

"The fluid level looks about the same," he says.

Marcia, relieved by her husband's amateur diagnosis, teases him.

"Put the X-rays up, Bob. They show how flat-chested I am."

Clinic staffers agree with Bob's reading.

"You're looking great," transplant coordinator Gigi Sackleh says. "The fluid probably will be absorbed by the body. We don't see anything to worry about.

"Wear your mask, take your medicines, record your oxygen intake and your temperature and your other vitals every day and enjoy life."

Life: Marcia embraces it.

She drives now. She dresses up when she and Bob go out. She buys new lipstick. She plays with the cats. She visits young transplant candidate Sherri Rhodes of Hendersonville, N.C., helping Sherri overcome her fear of the surgery.

She remembers Jerry Phillips, a patient with whom she'd developed a special bond. She visits Jerry on clinic days. She visits Jerry on other days, too.

Her only regret during her recovery is that she and Bob were out when Jerry and his wife, Donna, called to tell them he's finally been matched with a donor heart.

Bob and Marcia are at the hospital the next morning, though.

"Jerry is one friend we could never forget," Bob says.

On a late-June visit to the lung transplant clinic, Marcia and Bob cause quite a disturbance.

Deliberately.

They stick a rubber Frankenstein scar they bought at a theatrical supply house over Marcia's neck-to-navel scar and smudge it with makeup to make it look real.

In the examining room, members of the transplant team see the faux scar and panic.

They want to know what happened. They are just about to call in Marcia's transplant surgeon when Marcia discloses the fraud.

Dr. E. Wesley Ely and lung transplant coordinator Andrea Goodwin laughingly tell them to leave; such antics assure them that Marcia is ready to go home. Not to her Nashville apartment, they confirm, but to her true home, the farm that awaits her back in Texas.

Marcia tells her Nashville friends goodbye at a party given for her by Rhonda and Richard Demonbreun.

Just as Marcia has stayed with the Demonbreuns when Bob was out of town on business, she will stay with them at their home -- "the Hotel Demonbreun" -- when she returns to Vanderbilt for follow-up checkups. Marcia will have the checkups at Vanderbilt for the rest of her life.

No one knows how long Marcia will live with her new heart and her new lungs.

One of her pulmonologists, Dr. Ely, gives her statistical odds: "An 80% chance to live one year; a 50% chance to live five to seven years. ... Of course, she could live longer. Lots longer."

The longest living heart-lung transplant patient in the United States died in March. He lived 20 years with his donor organs.

Now that Marcia's life is more normal and she is stronger, she broaches a subject she finds wrenching: For her to live, someone had to die.

That someone was a woman in Iowa, just a few years younger than her.

That someone probably had family who grieves her death.

"I pray for that family," Marcia says. "And I've asked everyone else to pray for them, too."

Without them, she knows, she wouldn't have had this second chance at life.