Photograph by: Ed Kaiser, The Journal, Edmonton Journal
BY JODIE SINNEMA, EDMONTON JOURNAL
Kolby Zanier carries her heart around in her purse.
At first, it felt a little heavy on her shoulder, at just over two kilograms with a controller and batteries and spares, all connected to the human organ by cable through a hole in her belly.
But the 14-year-old is getting used to its weight, especially since it allows her to go home to Rossland, B.C., attend Grade 10, even run or play volleyball if she chooses. Swimming is out and contact sports would be iffy.
Kolby is the first pediatric patient in Canada - and likely the third in North America - to receive a HeartWare pump, a device patched into the bottom part of her severely damaged left ventricle. It pumps blood from the heart chamber through a tube directly into her aorta, which circulates blood through her body.
Until Kolby came along to try the new device, children with failed hearts like hers either needed a heart transplant - Kolby's heart was in such bad shape she couldn't wait any longer for a suitable donor heart - or a Berlin heart, a bulkier device created 20 years ago that often requires patients to stay in hospital up to one year because of life-threatening complications. It even makes taking showers an ordeal because of its external machinery.
The Berlin heart saves lives, but within two to four months of implantation, patients have a 20-to 30-per-cent risk of strokes caused by blood clots, said Dr. Holger Buchholz, director of the pediatric artificial heart program at Stollery Children's Hospital, which accepts complex pediatric heart patients from Western Canada.
The risk with the new HeartWare pump is far lower at three to five per cent.
The small pump has been approved in Europe for adult patients, but when Kolby came along, Buchholz said he received quick approval from Health Canada to implant the promising device into her since it was such a good fit.
It came as a surprise to Kolby and her parents, even though Kolby was born with a congenital heart defect due to a rare genetic disease called Alstrom syndrome. That syndrome also affects her sight and hearing.
But when she and her parents arrived in Edmonton for two days of appointments July 18, they were told Kolby was so sick she couldn't leave.
Her heart was failing - pumping about five to 10 per cent of the normal flow - as were her lungs, kidney and stomach. Doctors drained 20 kilograms of extra liquid that had built up in her sick, tired body.
Six weeks in hospital didn't improve Kolby's heart. The wait for a heart transplant could have killed her.
On Aug. 28, Dr. Ivan Rebeyka spent five hours inside Kolby's chest, sewing in the heart pump.
"I wasn't very happy," Kolby said. "I've always been not very healthy, but that's, like, my normal.
"I didn't think I was so bad and then I was, like, 'Why do I need this?' But I guess I did."
Buchholz said Kolby's new heart system is now feeding her body more blood than it's had in the past five years.
"I can do a lot more and I'm not so tired, so that's really good," Kolby said.
Within a week, she hopes to be back home in B.C. to her friends, two older sisters and her dog Mister. In the meantime, she and her parents are being trained how to keep her heart's battery charged and its controller - or the brain of the heart - safe in her satchel.
"We're almost home and can see the light at the end of the tunnel," said Kolby's father, Barry Zanier. "We're thrilled."
The batteries last about five hours, but can be charged in a car lighter socket during the 10-hour drive home.
Kolby also knows to ensure the external cable or machine doesn't get snagged or caught in a door.
"At this point, Kolby doesn't want a transplant," Buchholz said. "I think she wants to go home, wants to be a little bit like a normal child, go back to school, think about what all happened in the last few months and then reconsider this."
Buchholz said the pump will keep Kolby happy for five to 10 years before she needs to consider putting her name on the heart transplant list, compared to the three to six months most patients are attached to the Berlin heart. And while the Berlin heart is only used as a lastditch emergency measure for very sick people, Buchholz said the Heart-Ware pump can be used sooner to prevent people from reaching that stage.
"The overall risk is much, much lower, plus the quality of life is much, much higher," he said. "The Berlin is a good device, but times are changing and I think this is the future of the devices. . In the end, our hope is one day we don't need Berlin hearts at all anymore and we have much better devices even for the babies."
Buchholz said the HeartWare pump is currently in regulatory stages of approval for use in Canada.
"It's a big change," he said, and could be even more revolutionary if a company succeeds in building a device where all the parts are internal.
"I think right now, it's still a bridge to transplant, but I hope in the next 10 years we will actually see devices where everything is inside. It would then be an alternative to transplantation."
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