Willow Eggleston had known for a long time about her heart defect. He lived with flapping and shortness of breath but, now in his 60s, his body was beginning to fail. (Chris Clark | Spectrum Health Rhythm)
Willow and her husband, Mark, had raised two children. As her symptoms worsened, she found it difficult to avoid despair. (Chris Clark | Spectrum Health Rhythm)
Willow remembers that terrible feeling of defeat. “That’s not me,” he said. “It bothered me so much that I was no longer that strong person.” (Chris Clark | Spectrum Health Rhythm)
In March 2019, Willow collapsed in her living room. Her granddaughters were with her. “Lilly kept saying, ‘Grandma, wake up! What happened? Are you okay?'” Willow said. (Chris Clark | Spectrum Health Rhythm)
Willow had been told that her condition was inoperable. Joseph Vettukattil, MD, a congenital cardiologist, has experience correcting heart defects. He told Willow that he could help her. (Chris Clark | Spectrum Health Rhythm)
“He (Dr. Vettukattil) told me I could fix the hole in my heart,” Willow recalled. “I said, ‘No, you can’t. It can’t be fixed. ‘ He said, ‘Yes, I can.’ “(Chris Clark | Spectrum Health Beat)
During a 45-minute catheterization procedure, Dr. Vettukattil reduced the 40-millimeter hole in Willow’s heart to 8 millimeters. The total closure would have been too much change. (Chris Clark | Spectrum Health Rhythm)
Willow Eggleston, 66, had long struggled with pulmonary arterial hypertension.
He knew it was due to a congenital heart defect. He also knew that the doctors determined that nothing could be done to remedy the problem.
And he remembers precisely the moment when his situation went from chronic illness to pure terror.
It happened in March 2019.
At one point she was babysitting Lillian and Evelyn, her two little granddaughters, while they quietly watched a movie and ate pizza. The next, she found herself lying in her recliner, one of the girls bending over her.
“Lilly kept saying, ‘Grandma, wake up! What happened? You are well? ‘”Eggleston said.
Eggleston woke up long enough to know that he was in serious trouble.
“I called 911 and called my daughter to tell her to come get the children,” she said. “The two girls were still there when the ambulance arrived, with the lights on.”
The ambulance rushed her to Butterworth Hospital of Spectrum Health.
There, the doctors gave a dire prognosis.
“When they warned me that they might have to intubate me and put me on a ventilator, it was scary,” Eggleston said. “I did my best to stay positive.”
While it was not the first time she had been hospitalized for this condition, it would be the scariest.
And it was becoming increasingly difficult for her to stay positive.
‘That is not me’
By the mid-1960s, Eggleston was over his share of ups and downs.
Doctors first diagnosed his heart defect, a large hole in his heart known as an atrial septal defect, when he was 40 years old. It helped explain some of the minor symptoms he had had, such as flapping and shortness of breath, for much of his life.
But the Bath, Michigan, resident also learned she had an inoperable condition.
Any attempt at corrective surgery can prove fatal.
His symptoms got worse over the years.
“By now, I was wearing a diaper and a walker,” he said. “I did not want to eat. And I had so much fluid that I couldn’t lie on my back. “
Her care team initially suspected that a double lung transplant might help, but quickly determined that she was not a suitable candidate for transplantation.
Eggleston found it difficult to avoid despair. His body systems began to fail, including his kidneys.
Remember that terrible feeling of defeat.
“That’s not me,” he said. “It bothered me so much that I was no longer that strong person. My daughter finally begged me, saying, ‘Mom, please don’t give up.’
Dr. Vettukattil has extensive experience repairing heart defects.
“He told me he could fix the hole in my heart,” Eggleston recalled. “I said, ‘No, you can’t. It can’t be fixed. ‘ He said, ‘Yes, I can.’
in a healthy heart, the blood enters through two large veins and then flushes the oxygen-poor blood into the right atrium or upper chamber.
The blood then flows into the right ventricle as the atrium contracts, which pumps it into the lungs.
Once the lungs replace oxygen, it flows into the left atrium and then into the left ventricle, which pumps it throughout the body.
Typically that results in equal amounts of blood in each direction, Dr. Vettukattil said.
But the hole in Eggleston’s heart meant that, throughout his life, his lungs had been receiving three to four times more blood than his body.
This caused constant and excessive pressure and was the source of his symptoms getting worse.
In Eggleston’s case, the heart defect manifested as pulmonary pressure.
“She was really sick,” Dr. Vettukattil said. “The fluid was building up in his body and he was unable to walk. I couldn’t breathe. “
He was diagnosed with pulmonary hypertension associated with atrial septal defect, a poorly understood and inappropriately managed heart defect that occurs mainly in women. The reason that nearly 80% of patients with this condition are women is not yet clear, Dr. Vettukattil said.
Eggleston’s heart had a large hole, about 40 millimeters, or an inch and a half.
“We couldn’t shut it down completely,” the doctor said. “His heart could not cope with the sudden change in hemodynamics.”
Instead, in June 2019, he performed what’s called a fenestrated atrial septal defect closure, using a fenestrated atrial septal defect (FASD) occluder from a European manufacturer. The research device, manufactured by Occlutech, a Swedish company, is not yet approved for use in the United States by the Food and Drug Administration.
The FDA granted compassionate use authorization for the use of the FASD occluder in Eggleston due to its clinical condition.
Instead of opting for open heart surgery, Dr. Vettukattil inserted the device by passing a wire through an artery near his groin.
In 45 minutes, he reduced the huge hole in Eggleston’s heart to 8 millimeters.
The catheterization procedure, performed at Helen DeVos Children’s Hospital, is quick. But the body’s recovery is slow.
Children generally recover faster, often within six months. Adult hearts may never fully return to normal, but they do improve.
“The damage has been done to the heart over a long period,” said Dr. Vettukattil.
Much of his work focuses on pediatric patients, but it is common for heart defects to appear much later in life. He has performed cardiac catheterizations in patients up to 82 years of age.
Congenital heart defects are the most common birth defects, affecting approximately 1% of children born each year.
The Centers for Disease Control and Prevention Dear approximately 1 million children and 1.4 million adults have these defects.
Getting his life back
While his pulmonary arterial hypertension will never completely go away, Eggleston has gradually felt the benefits of the procedure.
“Within a month, I was no longer constantly sleeping,” he said. “I still needed the oxygen at first, but then less and less.”
She still uses a portable tank when she goes for a walk.
“It took me a year for my heart to return to its normal size,” he said. But I can clean the house. I get on the treadmill. “
She and her husband are traveling again, with their eyes on Orange Beach, Alabama, for some time in the sun.
And where he once took three medications to treat his pulmonary hypertension, it came down to one.
She often pinches herself as she contemplates how different her life is today.
“I know I’m 66, but I’m not sorry,” he said. “I feel like Dr. Vettukattil gave me another 30 years to enjoy life.”
Continue to monitor your heart rate and oxygen levels.
She and Dr. Vettukattil hope that the device in her heart will get FDA approval. More people can learn about treatment over time.
“It’s this little piece of hardware that changes everything,” Eggleston said.
Since then, Dr. Vettukattil has installed the new devices in five patients, all women.
“We have broken the myth that nothing can be done to help them,” said Dr. Vettukattil. “And we think this procedure will become more common as a result.”
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