MILL CREEK — The first thing Kayla Healy wants to do when she gets new lungs is go for a jog.
The phone call from the surgeon may come any minute.
Kayla, who turned 18 this month, is waiting for a double lung transplant. The recent Jackson High School graduate lives with cystic fibrosis, a life-threatening condition that takes away a person’s lung capacity. There is no cure.
Kayla has been in the spotlight since last fall, when students at Jackson and other Snohomish County schools started to organize fundraisers for her.
Total costs for a double lung transplant can run up to $1 million. Kayla’s mother, Lori Healy, and father, Tron Manes, have insurance but still will be responsible for $100,000 or more. The couple’s insurance plans have caps on how much the companies will pay for a procedure.
“There’s got to be something wrong with the system if we have two insurances and are still having to fundraise,” Lori Healy said.
Their goal of raising $100,000 seemed impossible a year ago. Yet family and friends have since raised almost $94,000. They hope a silent auction planned for July 9 will bring in the rest.
Kayla’s aunt, Teri Healy, and other volunteers managed to get donations of 100 products and services for the auction. The Big River Winery in Snohomish gave 100 bottles of red wine bearing a special label with Kayla’s picture.
Kayla’s family moved to the area six years ago from northern California to be close to a good hospital and a lung transplant facility. She was diagnosed with cystic fibrosis as a baby. The illness brought a life of daily medications and doctor’s appointments. Kayla didn’t let that stop her: She played sports, ran races and competed in triathlons. Everything changed last September when the disease ate away at her lungs so much that she was placed on a transplant list.
Her name has since moved up on the list.
If you put a drinking straw in your mouth, plug your nose and breathe through the straw for about a minute, you’ll get an idea of how Kayla feels all the time now, Lori Healy said.
It’s a waiting game. So many things need to come together for a set of lungs to match Kayla’s body.
“It sucks. I just hate waiting,” she said, resting at her aunt and uncle’s Seattle home on a recent afternoon.
Kayla is 5 feet, 2 inches tall and looks younger than your average 18-year-old. Already a thin girl, she lost a lot of weight recently. She has no appetite and gets tired quickly. She carries a small oxygen tank with her. But behind the small frame, Kayla is a strong, grownup person with an unbreakable attitude. She rolls her eyes when her mom and aunt talk about her beauty.
Kayla was admitted to Seattle Children’s Hospital last week. Lori Healy works days during the week but always spends the night with her daughter.
Kayla gets a daily pass to go outside for a few hours. She and her mom usually visit Kayla’s aunt and uncle in Seattle’s Queen Anne neighborhood or go to the University Village shopping center. Kayla likes to get a cup of pineapple frozen yogurt with Japanese mochi and Gummi Bears.
She can’t be in common rooms with other patients because her immune system is weak. She has a computer in her room so she can go online. Friends and relatives visit all the time, and nurses play board games with her when they can spare time.
She plans to start taking one or two college classes while she’s waiting for new lungs. Some day she’d like to be an emergency medical technician, though that may be a challenge because her immune system will remain suppressed after her operation. She may study to be a pilot, or maybe a veterinarian, instead.
She’d like to try skydiving, parasailing and bungee jumping, though her mom isn’t too excited about those ideas.
Doctors wanted Kayla in the hospital the week before graduation, but she refused. She didn’t want to miss the experience. She had been studying with a tutor at home the last couple of months but went to school the final four days of her senior year.
“The first day I got my yearbook, it had a page full of signatures,” she said. “All the teachers and staff signed it.”
On June 18, the day of graduation, Kayla’s family had a barbecue. Her aunt and grandfather flew up from California. Kayla decided not to dress up for graduation: She wore jeans, a T-shirt and purple tennis shoes — her favorite color. When her name was called, she walked up on stage to get her diploma.
Getting that diploma was a relief. Illness forced her to spend so much time away from school her senior year that she was worried she may not be able to graduate on time.
“When she went on stage, there wasn’t one kid out there who wasn’t screaming for her,” Lori Healy said.
Katya Yefimova: 425-339-3452; kyefimova@heraldnet.com
The Help Kayla Breathe Silent Auction is from 6 p.m. to midnight July 9 at 6411 Seaview Ave. NW, Seattle. Tickets are $40 per person, $75 for two. There will be hosted beer and wine, appetizers, live music and dancing. For more information about Kayla Healy or to buy tickets, go to cotaforkaylah.com.
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