Hayes family lives with cystic fibrosis

Linda Saholt

News Review Correspondent

Hayes family lives with cystic fibrosisJason Hayes, 34, was not diagnosed with cystic fibrosis until 1997, just after he graduated from high school. He’d had it all along; the right tests simply weren’t done until then.

“They didn’t expect him to survive infancy,” said April, his wife.

“I was always sick,” said Jason. “It turned out they did a sweat chloride test early on but somehow we never got the results back. That would have told them right off to test further for CF.

“The pediatrician thought it was bad asthma. I managed to survive to high school with essentially no treatment. I started having severe breathing issues and went into the hospital. I was treated, but they didn’t know what it was.

“My regular doctor was out, so I went to see a different doctor. He asked if I had ever been tested for CF. They did two tests and both came back positive. It snowballed from there, and I got on proper treatment soon after.”

Unfortunately, treatment for CF is expensive, and by this time Jason was on his own — without any insurance.

While attending California State University, Chico, he found out about the Genetically Handicapped Persons Program, a state program that covers medical expenses for adults with CF. This is a sliding-scale program, and while Jason was a low-income student, the program covered his medical expenses for free.

“The less severe forms can have a life expectancy into their 40s to 50s,” said Jason. “The big thing is the respiratory infections. You don’t want to get the flu or anything like that.”

“Adult clinics are getting better. He’s getting hypertonic treatments. He has the best now,” said April. Jason has single deltaF508-type CF, more than 1,000 different mutations of the disease.

Their son, Logan, age two and a half, has been tested. “He’s negative for all forms that they can test for, as well as Jason’s specific form, but no matter what, he’ll be a carrier,” said April.

Among the more well-known effects of CF are lung-clogging mucus, severe respiratory problems and digestive issues.

One effect of CF that most people don’t know about is reproductive damage. For Jason, and his brother, who is a carrier, this took the form of being born without a vas deferens, the tube that carries sperm out of the body. Their bodies produce healthy sperm, but with no way to release it.

This meant both had to undergo invasive procedures for in-vitro fertilization in order to father children.

“Logan is an in-vitro baby,” said April. “Insurance in general does not cover any of the expenses, so it’s all out of pocket. Right now it costs $20,000 and up for each attempt, with a success rate of about 50 percent. Some couples have to try several times.

“I’m OK with it, other than not being able to have a bunch of babies. They’re just too expensive.”

“Much more expensive and much less fun,” said Jason.

Jason finds that doing all the medications and treatments takes up a lot of time, but it’s essential. “Day to day, it’s not too bad,” he said. He holds down a full-time job at China Lake.

Knowing how important it is for those with CF to get proper exercise, Jason takes Logan to the park frequently, as well as going on bike rides. That keeps them both active.

Jason, who was born in Needles, earned his bachelor’s degree in computer science in 2003, then a master’s in 2005. He and April met in college in 2004 while Jason was in the master’s program. They moved to Ridgecrest after college.

Both Jason and April have participated in the Great Strides Walks each year since the walks started here in Ridgecrest.

“What we’d like to see is more people supporting CF research by coming out and walking at the Great Strides Walk. That’s what spurs the research, making it more a known issue and more people willing to participate,” said April.

The Great Strides Walk here in Ridgecrest is set for Saturday, Dec. 7, at Cerro Coso Community College’s track. Registration begins at 9:30 a.m., and the walk begins at 10 a.m. For more information, see www.cff.org.

Story First Published: 2013-11-20