Heart to Heart

During a girls night out March 27, Camasia Foltz, left, and her mother, Julia, both of Jasper, got manicures and pedicures at Lovely Nails in Jasper. The women share a rare genetic heart malady known as Danon disease, which has required them both to undergo heart transplant surgery. Julia’s transplant was in 2008 and Camasia’s was in February of this year. Since the two returned home March 6 after Camasia’s heart transplant surgery and regained a regular routine, they felt they hadn’t seen each other very much and decided they needed some quality time together.

Story by John Seasly
Photos by Rachel Mummey

Camasia’s heart beats faster than yours or mine. It has beat inside her body only since February. Before that, it belonged to a stranger.

In January, 20-year-old Camasia Foltz was lying in a Cleveland Clinic hospital bed, far from her Jasper home, her old heart swollen and struggling.

She had recently returned to Indiana State University in Terre Haute, to start the second semester of her sophomore year. She was in relatively good shape, having been a runner at Northeast Dubois High School, from where she graduated in 2011.

Walking to her car from campus, she became dangerously short of breath. She wondered if she would even make it to the car and she knew then that something was wrong. Since the 10th grade, she had known that this day was coming. She wished it would have waited a little longer.

Like Julia (Kearby) Foltz, her mother, Camasia has a rare genetic condition called Danon disease. It can cause the heart muscle to thicken and deteriorate. Heart troubles have been responsible for the premature deaths of several relatives, including Camasia’s cousin and Julia’s father.

Julia, 40, had a heart transplant in 2008 in the same hospital, for the same condition. Earlier this year, sitting next to her daughter’s hospital bed, she knew what Camasia was up against, and she wished that she could take her daughter’s place.

As suspected, Camasia’s heart was very thick and very weak. She was moved to the top of the transplant waiting list, status 1A. While she waited, she was visited by her father, Tony Foltz, her boyfriend, Ryan Brames, and her mother’s boyfriend, Jason Stenftenagel. She received more than 100 cards from family and friends, and 390 messages on a website set up by her mother. She filled a scrapbook with mementos of the experience.

Camasia and Julia recorded Camasia’s journey through her heart transplant and subsequent recovery by keeping a scrapbook with photos and newspaper clippings.

Camasia is 5 feet 9 inches tall, with long brown hair and a generous smile. Even confined to her bed, she would smile, full of hope.

Two weeks after she was admitted to the hospital, the doctors told her that a heart had been found.

The first successful heart transplant was performed in 1967. Since then, more than 85,000 such procedures have been performed worldwide. Now, more than 5,000 are done every year, including more than 2,300 in the United States.

Camasia was Cleveland Clinic’s 1,598th transplant. A team of about a dozen doctors and nurses, including her surgeon, Dr. Nader Moazami, prepared an operating room for the transplant in the early hours of Feb. 5. Camasia was wheeled in and anesthetized. Her chest was cut open through the middle breast bone and her body was attached to a heart-lung machine, which circulated her blood as the doctors continued working. Moazami severed the four valves of her heart, then removed it completely. He trimmed the vessels of the transplant to match Camasia’s. Valve by valve, he sewed the new heart into her chest.

As soon as blood flow was restored, the heart started to beat. The surgery took six hours.

Camasia awoke thirsty and in pain, but otherwise in stable condition. She took her first steps two days later. She spent the next month in physical therapy, moving out of the heart failure intensive care unit to a hotel near the hospital as her condition improved.

Camasia and Julia returned home to Jasper on the night of March 6. Camasia sat in the back seat, lest the front seat airbag deploy and shatter her still-healing breastbone. Waiting at the house were Tony, Jason and his mother, Helen, and the Foltzes’ Shih Tzu, Maddie.

Maddie ran to the door, barking excitedly at Camasia’s feet. Julia picked up the little dog, who licked Camasia’s face. Her dad gave her a hug.

Camasia sat on the couch beside her dad. He turned to her and told her how happy he was to have her home. But mostly he was choked with quiet emotion and did not speak. He and Helen left a little while later.

While waiting to begin a rehabilitation session at Heartland Cardiology Associates in Jasper on April 22, Camasia and fellow rehab participants Bonnie Gould of Loogootee, left, her husband, Kurt, and Al Harris of St. Anthony chatted about their low-cholesterol diets. Camasia was the youngest person in the classes, and because of her young age many of the others were surprised to find out that she was there for something as serious as a heart transplant.

At 8:18 p.m., Julia and Camasia remembered to take their 8 p.m. pills. Both follow a strict prescription regimen and specific times for when to take them. On a given day, Camasia still takes 33 to 35 pills a day, from 15 prescriptions, at 8 a.m., noon and 5, 8 and 10 p.m. Julia takes 11 pills, at 8 a.m. and 8 p.m.

Julia hugged Stan Hodges of Loogootee at Camaisa’s homecoming party at the Moose Lodge in Jasper on March 10. Hodges and his family are close friends of the Foltzes and were at the Cleveland Clinic when Julia had her heart transplant in 2008.

They took their pills together. Julia downed hers all at once. Camasia swallowed hers one at a time.

At the Moose Lodge that Sunday, a party was thrown in Camasia’s honor. People brought gifts and congratulated her on her recovery. Pat Evans, one of Julia’s co-workers at Northwood Retirement Community, hugged Camasia gingerly on her side.

“I don’t want to squeeze in the wrong place,” she said. “No, I don’t hurt at all,” Camasia replied, touching her sternum where the surgery left a clean, 6-inch vertical scar.

Guests paged through her scrapbook and asked about the transplant. She brought a surgical mask, to protect her permanently weakened immune system, but chose not to wear it. By the end of the party, her left leg was bothering her, near the femoral artery where Cleveland Clinic doctors had inserted a heart catheter. Pain was shooting down the leg. She took some Tylenol, and the pain subsided a little.

Back home after the party, Camasia organized her prescriptions. Some are immunosuppressant, or anti-rejection, medications, which she will take for the rest of her life. They prevent her body’s immune system from attacking her new heart, but they also make her more susceptible to infections. To counteract this, she takes antibiotics and a host of supplements.

The first year after a transplant is the most critical for survival. A rejection can occur at any time, but it is most likely within the first six months. Among 18- to 34-year-old American heart transplant recipients, 86.9 percent survive the first year, according to the Organ Procurement and Transplantation Network. Seventy-five percent survive three years, and 67.7 percent survive five years. Survival is higher on average for adult Cleveland Clinic patients: 96.3 percent survive the first year, and 82.4 percent survive three years.

The conditional half-life for a heart transplant is about 13 years, Moazami said. In other words, of the patients who have survived the first year, 50 percent of their hearts will still function after 13 years. And 50 percent will not.

Transplanted hearts are subject to accelerated wear and tear.

Camasia sorted her medication for the upcoming week at her house March 10. When she returned home after the transplant, she was taking upward of 37 pills a day. Now, she daily takes 33 to 35 pills, many of which are to keep her body from rejecting her heart.

“We think this is a chronic, low-grade, ongoing rejection process,” Moazami said. “It leads to the blood vessels of the heart wearing down.”

This means that Camasia almost certainly will need another transplant by her mid-30s. Julia, too, likely will need a new heart sometime in the next decade.

On the five-week anniversary of her heart transplant, Camasia received help from Julia as they joked around while testing the air vent on an exercise bike at the Jasper home of Julia’s boyfriend, Jason Stenftenagel, on March 12. Camasia biked a little more than four miles in 20 minutes while maintaining a heart rate below 160 beats per minute.

For transplant recipients, it is vital to minimize the strain put on their new hearts. To do this, the individuals must exercise, diet and maintain a healthy weight. Soon after she returned from Cleveland, Camasia signed up for physical therapy, 36 sessions over 12 weeks, at Heartland Cardiology Associates in Jasper.

The routine is always the same. She signs in and weighs herself — she lost about 20 pounds after the surgery, although she gained some of them back. She attaches electrodes to her body to monitor her heart rate. She sits down next to the other patients and waits for the class to begin.

She is the youngest in the class by several decades. Early on, one of the patients, 71-year-old Al Harris of St. Anthony, who is recovering from having a coronary stent implanted, asked what she was doing there.

“I had a heart transplant,” she told him.

“Holy cow,” he said.

Most of them exercised lightly. Camasia wanted to go faster, to run like she did in high school.

Because the nerves to Camasia’s heart were severed during the transplant operation, it beats faster than average. While a normal heart at rest beats 60 to 100 times per minute, Camasia’s beats 100 to 110 times per minute.

Riding a stationary bike during her third session, she pedaled quickly. Her heart rate, indicated by a pulsing white line on the monitor behind her, steadily increased, to 137, 147, 150 beats per minute.
Nurse Sue Wehr stood next to her and paid close attention to the screen. At 153, the line turned red, and climbed to 156, then 157. Sue asked Camasia if she wanted to slow down. Camasia did not.

Her heart rate peaked at 157, and hovered above 150. The nurses let her pedal fast, and run. By the end she had worked up a sweat.

Every four to six weeks, Camasia returns to Cleveland Clinic for a biopsy, in which a doctor removes a sample of heart tissue the size of a pinhead. The biopsies show whether her body is rejecting the heart. The test results — 0 for no rejection, 1 for mild rejection, up to 4, for severe rejection — also determine whether her medications should be adjusted. A result of 0 is ideal, but 1 is acceptable.

Raising awareness for organ donation through the Indiana Organ Procurement Organization, Camasia, Julia, friends and co-workers at Northwood Retirement Community in Jasper dressed as the three-eyed aliens from the movie “Toy Story” on April 26. They posed for a group picture that was sent to the organization for a competition, the winners of which received a pizza party.

Of her eight biopsies, all have come back 0 or 1.

On March 29, Camasia visited Northwood Retirement Community, where Julia is the office manager.

Camasia used to work in the kitchen over summer breaks and holidays. She came today to play bingo with the residents. She talked and laughed with them, and showed them the top of her scar.

She was careful to avoid germs, and discreetly washed her hands several times at the hand sanitizer dispenser.

Upon returning home from the Cleveland Clinic on March 6 after her heart transplant, Camasia spent time with her boyfriend, Ryan Brames of Huntingburg, at her mother’s home in Jasper.

Activities assistant Kay Morgan stood by the bingo equipment with a microphone.

“OK, everybody ready to start playing bingo?” she asked.

She called out the first number.

Camasia timidly showed her scar to Kristine Starr’s first-grade class at Dubois Elementary School on May 2. The class sent Camasia Valentine’s Day cards while she was recovering at Cleveland Clinic. She visited the class to thank the students personally and talk to them about her experience.

“B-10. Bee-one-zero,” she said, and paused. “Before I continue, we’re all so happy to have Camasia with us. Give her a hand. She’s an extraordinary girl, and she’s been through a lot. We’re just tickled to death.”

The residents applauded, and Camasia grinned sheepishly, embarrassed by the attention.

In the four months since her surgery, Camasia has experienced a remarkable recovery. She can run and golf and drive a car. She has taken a part-time job at Walgreens and returned to volunteering at Northwood. She is down to only 33 pills a day. She has not gotten sick, or had a single rejection incident. She plans to return to college in the fall, to study nursing.

She hasn’t felt this strong since the sixth grade, before she started having heart problems. At this time a year ago, a flight of stairs would leave her out of breath and wheezing.

“Now I just run up those steps and do whatever I want,” she said.

She chooses to think about the life she has ahead of her, rather than the risks that come with it.

“I try not to think about that,” she said. “I try to live each day, feel good —”
“Live it to the most,” Julia finished.

Contact John Seasly at news@dcherald.com.

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