Lynnwood mother on transplant list waits to breathe freely
Almost overnight, young mother was stricken with rare disease
Dan Bates / The Herald
Heather Phillips spends one-on-one time with her son, Corbin, 2, earlier this month. Phillips is awaiting a double lung transplant.
Dan Bates / The Herald
Heather Phillips, 28, holds her 1-year-old daughter, Keira, while her 2-year-old son, Corbin, plays nearby in the family's living room earlier this month.
Phillips hugs Corbin as they sit together at the bottom of the stairs.
Dan Bates / The Herald
Heather Phillips, 28, helps her daughter, Keira, 1, and her son, Corbin, 2. It is near the children's nap time, so they are beginning to get a little fussy. The young mother spends as much time as possible being close with her children because, following a double lung transplant, which she needs very soon, she won't be able to hold them as close and kiss them for several months because of the risk of infection.
Unless we're dashing out the door, lugging groceries up the stairs, or running up a hill, it's rare to have even a momentary feeling of breathlessness.
For Heather Phillips, 28, the mother of two young children, that feeling of breathlessness is one she lives with nearly every moment of every day.
"I don't feel like I can take very deep breaths," she said. "I get shortness of breath very easily, just any walking around, I'm constantly catching my breath as if I'm running on the treadmill."
This from a woman who enjoyed biking along the Burke-Gilman Trail, running with her husband, Josh Phillips, at Seattle's Green Lake Park, and completing the high-octane Insanity fitness program, not just once but four times. Its workouts are so intense it can make couch potatoes nearly break into a sweat just watching its commercials.
Now, she is almost constantly tethered to an oxygen tank, dependent upon it for even for a simple, sitting breath.
She began to sense that something was wrong last year, in July, six months into her second pregnancy. "Like a click of a button, all of a sudden I could not breathe," she said.
She was hospitalized at Swedish Medical Center in Seattle and put on oxygen for two weeks. Doctors couldn't figure out the cause of her shortness of breath. They wanted to do a test, a lung biopsy, but decided to wait until after her baby's birth.
She was admitted to the hospital again for the last four weeks of her pregnancy. She delivered Keira, a healthy baby girl, on Sept. 7, 2011.
"It was definitely a harder labor than with my son, Corbin," she said. "I was on a pretty high dose of oxygen."
Doctors still couldn't figure out why such a fit young woman suddenly was struggling to breathe. In January, she was referred to Dr. Ganesh Raghu at the University of Washington, a lung transplant pulmonologist.
A month later, she was diagnosed with constrictive bronchiolitis, a narrowing of the small airways deep in her lungs that can cause inflammation and scarring. It also causes increased blood pressure in the arteries of her lungs.
"It's an extremely unusual and very rare disease," Raghu said. Over the last three decades, he's only come across 10 to 15 patients that have a condition similar to hers, he said.
Doctors aren't clear on what triggered her disease, and there is no cure. The patient's only option is to get a double lung transplant.
On July 9, Phillips' name was added to the list of more than 1,600 patients on the national waiting list for a lung transplant. "Now, I just have to wait," she said.
Just inside the door of her Lynnwood home sit six metallic canisters filled with oxygen. The smallest is about two feet high. Heather Phillips slips one canister into a red cloth sling that hangs near her waist to keep her body supplied with oxygen, delivered through a thin, clear tube attached to her nose.
The canister's supply can be depleted with just one trip to the grocery store, as she lifts both kids and groceries. "Being so young, it feels weird to live this way," Phillips said. "I was just at the grocery store the other day and someone said: 'Oh wow! What's wrong with you?' "
Sometimes, her parents are waiting at her home to help carry in the bags of groceries. Corbin, just 2 ½ years old, tries to help, too. "Otherwise I just try to tough it out and carry them in and suffer the consequences -- catching my breath, trying to take deep breaths," she said.
Patients can wait up to a year for a lung transplant. Her new lungs could come from either a man or a woman, Raghu said. Blood tests are conducted prior to the surgery to ensure compatibility.
Phillips' husband, Josh Phillips, has health insurance through his job at an Everett company that delivers medical equipment.
Neither Heather Phillips nor her husband know the size of the medical bills they will face. Her transplant surgery is estimated to cost hundreds of thousands of dollars. Post-surgery prescriptions, including anti-rejection medications, could total $2,500 a month.
Friends have organized fundraisers. A blog, heatherslungs.com, includes updates on her condition and a link for electronic donations. So far, about $10,000 has been raised.
Phillips tries to go about her life as if it were not in limbo. Yet every time the phone rings, it's hard for her not to wonder: Is this the call informing her that donor lungs have been found?
Her young children can't really understand why their mom simply can't reach down and pick them up when they look up at her and smile or when they hold out their hands in expectation.
She has been advised not to, to avoid undue strain on her lungs. But sometimes, she can't resist the chance to hold them close.
She's been told that after the surgery, she won't be able to give her kids a kiss for several months. "My immune system will be really, really weak at first," she said.
"I'll have to wear a mask for a while," she said. "I can get sort of close, but not face-to-face. I can't even imagine what that's going to be like."
Phillips has been in contact with another patient, a 25-year-old Montana woman with cystic fibrosis who recently had a lung transplant.
"She's helped me understand what I'll be going through," Phillips said. "It makes it all a lot more easy. She's living this whole new life."
Phillips thinks about what she, too, might do after her transplant surgery, simple things so often taken for granted.
"I would love to take my kids out hiking somewhere," she said. It might be nearby, like a walk to the beach at Meadowdale Park, or it might be on a forest trail.
"It would just be so fun to be outside, and go romp around the woods," she said. "I just want to go!"
Sharon Salyer: 425-339-3486 or firstname.lastname@example.org
How you can help
More information on Heather Phillips, and a link to a donation site, are at www.heatherslungs.com.