Sheryll Nieboer spent Memorial Day weekend camping with her grandchildren at Gun Lake, Michigan.
For the first time in a long time, she got to sit around a campfire.
“I couldn’t do that before,” said Nieboer, 53, of Byron Center, Michigan. “I had oxygen, so I had to stay away from the fire.”
She had to stay away from a lot of things, in fact, until she underwent an innovative heart procedure performed by Joseph Vettukattil, MD, co-director of the Congenital Heart Center for Spectrum Health Helen DeVos Children’s Hospital.
Despite working at the children’s hospital, Dr. Vettukattil has patients of all ages. Nieboer’s procedure was a first for him, but he thinks it may have saved her life.
After a COPD diagnosis in 2012, Nieboer’s condition deteriorated dramatically.
She came down with a cold during the 2013 holiday season.
“I got an antibiotic and the cold went away,” she said. “But about a week after I quit taking the medication, I couldn’t breathe. Anything I did, I was out of breath.”
The simple pleasures in life—playing with her grandchildren, walks with her husband, prepping for a camping trip—became lung-intensive chores that left her breathless and depleted.
Surgery was supposed to start at 10 a.m. and be done by 1 p.m. I figured by 2 p.m. I’d be breathing better somewhere, either here or in heaven. I’m OK with both. But I really kind of want to be here to see the grandkids.
She visited a pulmonologist and went through a few rounds of steroids, antibiotics and CAT scans.
“He was kind of scratching his head trying to figure out what was going on,” Nieboer said. “I was getting worse, but my lungs didn’t look any worse.”
The illness made her factory job in Zeeland, Michigan, even more difficult. She struggled just to make it into the building.
She frequently tested her oxygen saturation rate with a fingertip monitor. While normal is in the high 90s, she ran about 83 percent.
“If I did anything, even just walked into the building from the parking lot, I was down to 75 percent,” she said. “I would have to stop and catch my breath.
“I was to the point I couldn’t even walk to the lunch room without taking a break,” she said. “So I just stayed on the line.”
A real alarm
In late spring, the company held a fire drill.
When Nieboer found she couldn’t make it out of the building, she grew truly alarmed. Her oxygen saturation levels had dropped to the 60s.
“I hid in an office,” she recalled. “There was no way I could walk out to the parking lot.”
By June she had to keep a 4-liter oxygen tank by her side, 24 hours a day.
Then she had to quit working.
“As the summer progressed, it was getting really bad,” she said. “I don’t know how to describe it, but I could feel that I was dying. I dropped below 100 pounds, even though I was eating like a horse.
“People said I looked so frail,” she said. “I’m looking in the mirror saying, ‘This looks bad.’ I started to buy kids’ clothes because they fit better.”
Going to the mailbox became a daylong ordeal. It took her three hours “to get the gumption up” to get the mail. She’d stop at the mailbox to catch her breath, then make the challenging trek back.
With no signs of improvement, her pulmonologist suggested they take a look at her heart.
An echocardiogram revealed the real culprit behind her breathing issues: There was a membrane in the heart dividing the left atrium into two, obstructing the blood flow from the lungs. This is a condition known as cor triatriatum.
She was referred to Dr. Vettukattil.
Nieboer said she’ll never forget his words: “We need to fix this. The normal procedure is open heart surgery, but we don’t feel you’ll survive that surgery.”
Those words came more as validation than shock.
“I could tell I was dying,” she said. “But it shocked the heck out of my husband, Tom.”
The only hope
Dr. Vettukattil said the hole in the membrane of the left atrium needed swift attention.
He would attempt a procedure he had never performed, one that had only been done one other time in the world—in India.
Friends, family and church members prayed for Nieboer.
At a soul level, she faced the reality of dying.
“Surgery was supposed to start at 10 a.m. and be done by 1 p.m.,” she said. “I figured by 2 p.m. I’d be breathing better somewhere, either here or in heaven. I’m OK with both. But I really kind of want to be here to see the grandkids.”
The procedure was the only hope, Dr. Vettukattil said.
“All the blood flow to the body had to come through this tiny hole,” the doctor said. “It is like building a dam in a river. She had this big dam inside that was blocking the blood from getting into her body. There was also back pressure of this blood not getting out of the heart and getting into the lung. She couldn’t breathe.”
She also had severe, chronic infection of the right lung which had entrapped most of her pulmonary veins draining blood from the right lung, Dr. Vettukattil said.
“No one wanted to do any surgery on her,” he said. “On top of that, they discussed possible heart-lung transplantation but she was not a good candidate because of her heart condition and degree of lung disease. We thought surgery would be quite risky.”
But Dr. Vettukattil wouldn’t give up on this patient whom another doctor had given five months to live.
In performing the innovative surgery, Dr. Vettukattil had to make a hole in one side of Nieboer’s heart so he could reach the troublesome membrane hole on the other side.
He inserted a wire in the membrane and put a balloon in to stretch it.
“The hole was about 9 millimeters,” Dr. Vettukattil said. “We could take it up to 24 or 25 millimeters. There was no other option for this patient, so I had to do it.”
When Nieboer came out of sedation, she noticed an immediate difference.
“As soon as I came to, I could breathe easier,” she said. “I stayed on oxygen for a week, just to give my body a chance to come back, but it was just instantaneous.”
These days, she can get the mail, clean the house and take a walk without giving any of it a second thought.
“When I used to go to the grocery store, I would park in the first handicap spot and have to stop and pretend I was looking at the produce so I could catch my breath,” she said. “Now, I park where I want, grab a cart and keep on going.”
Her improvement has been profound.
“Five days after the procedure, I was walking around the mall shopping for a cute pair of boots,” she said. “I could actually walk through the mall and not be tired or out of breath.”
She “woo-hooed” as she walked that day.
She still does.
“I don’t know if I’ll ever quit doing that ‘woo-hoo’ when I don’t have to stop all the time,” she said.