Former resident warns of altitude dangers
Summit Daily News
Looking back, former Placer Valley resident Susie Ryan says there were plenty of signs hinting at her son Charlie Ryan’s pulmonary hypertension. They just weren’t very evident to everyone around him.
Charlie, now 9, would always run out of energy quickly, Susie said. He always wanted his hand held and would sometimes ask his parents to carry him up the family’s steep driveway. But Charlie was never the athletic type, Susie said, so she and her husband, Steve, never thought much of their son’s lethargy.
The first big hint came when Charlie was attending kindergarten in Fairplay. He passed out while running during gym class, but everyone chalked it up to the exertion of too much energy too fast.
“No one really knew why a kid his age would pass out,” Susie said.
The following summer, Susie said Charlie passed out again, this time while running with his fraternal twin brother up a steep hill on the family’s property. Steve ran to Charlie’s side – Charlie was turning green – and quickly helped him up.
“We just assumed he passed out because it was a hot summer day and he ran up the mountain too fast,” Susie said.
The next school year, Charlie and his brothe started attending Breckenridge Elementary. Charlie contracted what everyone thought was a pneumonia in December, and was given medication and breathing treatments.
“But it wasn’t a pneumonia,” Susie said.
A few months later Charlie passed out again, once again during physical education. This was the worst episode; Charlie was not only turning green, but convulsing. Susie took him straight to the urgent care clinic. While the doctor didn’t name the disease, Susie said he instantly recognized it.
“He said what Charlie has is the same thing as the kids who just drop dead in the middle of sports games,” Susie said. “Really all of these (episodes) were pulmonary hypertension that had been building since we moved there when he was 2.”
Pulmonary hypertension is continuous high blood pressure in the pulmonary artery in the lungs, said Dr. Dunbar Ivy, director of the pediatric pulmonary hypertension program, and Charlie’s doctor, at The Children’s Hospital in Denver. The high pressure results in an enlarged heart, which can lose its ability to pump. While there are many different causes, Ivy said being at high altitude is one. He said professionals also suspect a genetic susceptibility.
Beth Coleman, a pediatric nurse practitioner at the hospital, said symptoms are non-specific and can be associated with other conditions. Symptoms include asthma, shortness of breath and passing out.
Ivy did say the condition is rare, affecting about 100,000 people in the United States.
To help manage Charlie’s condition, doctors told Susie she and her family would have to move to sea level immediately. Two weeks later, they packed up and headed to Blaine, Washington.
Charlie now sees doctors every three months. He has undergone echocardiograms, x-rays, MRIs and numerous stress tests to monitor his condition. He takes medication to help dilate his arteries. Eventually, there’s a chance he will need a lung, and even a heart, transplant and his life expectancy has been reduced.
“This is a progressive disease,” Susie said. “This is not going to get better; it’s only going to get worse. There’s nothing we can do.”
Now at sea level, Charlie doesn’t have to be on oxygen and has more ability to run and play with his friends, although Susie said she and his teachers are constantly monitoring him. She said Charlie enjoys creating art, writing stories and building with Legos. He even calls himself an inventor, and spent three years on his first big creation – a 15-foot long paint machine.
“Charlie acts as cute as he looks,” Susie said.
Susie hopes new drugs are developed soon, and is optimistic stem cell research can help him out in the future.
“He was so advanced by the time we actually found out what was wrong with him,” Susie said. “I just hope that other people (in Summit County) will see the signs, and if their child has something like that they’ll recognize it early.”
For more information about pulmonary hypertension, go to http://www.phassociation.org.
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