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Tuesday, April 2, 2019

How one woman, told she could die within 5 years, is beating the odds 20 years later

Valerie Chang has always led an active lifestyle, but she noticed something was wrong when she had trouble keeping up with her children and less-active friends on a hike.
When Chang was in college and law school, she was able to hike to the bottom of a section of the Grand Canyon and back up while carrying a full pack with no problem. So the dramatic change “was kind of alarming,” she tells Yahoo Lifestyle. She also started having weird symptoms at night around the same time. “I was waking up at night breathless,” she says. “It was very unsettling, and it was hard to calm down enough to go to sleep afterward.”
But it wasn’t until her friends started to push her to see a doctor about her symptoms that Chang finally decided to seek medical care. Her doctor gave her a full physical and said she was perfectly healthy. “My doctor also said it would probably be a waste of time and money, but he referred me to get a lung test just in case,” she recalls.
After the test, Chang says that the technician kept asking her if she was okay. “I said, ‘Yes, why are you asking?’ He said, ‘You need to go back and see your doctor right away,’” she recalls. It turned out that Chang had very low lung function. “I wasn’t doing very well,” she says.
She was eventually diagnosed with chronic obstructive pulmonary disease (COPD), an umbrella term for a group of lung diseases that block airflow and make it hard to breathe.
“I was shocked.”
Chang, now 61, has never been a smoker and has never really been exposed to second-hand smoke. “I’ve lead a pretty healthy life,” she says. “I was shocked.” She ended up seeing several lung specialists and no one could figure out the right treatment to help with her symptoms, or why she developed COPD in the first place.
Finally, she flew from Hawaii, where she lives, to Denver to see a specialist at National Jewish Health. “They did a whole bunch of tests and said, ‘We can’t figure out why you’re so bad and what happened, but we’ll keep working with you,’” she says. She ended up seeing a specialist there for the next 16 years.
Chang’s official diagnosis is “severe emphysema from no known cause.” “It’s terrifying,” she says. “I was very upset for quite a while.” She says she went to a medical school library and “read literally everything I could find on COPD and emphysema. Everything was very dire and depressing.” She kept coming across information that said that if you had lung function of less than 50 percent (which she did), the odds of living a year — much less five years — were slim.
Five years went by and she was still alive. “I eventually decided I wasn’t going to believe in doom and gloom, but educate myself as much as possible about my condition,” she says. Chang ended up turning to online support groups for help and eventually started the Hawaii COPD Coalition and became active in the U.S. COPD Coalition, where she is currently vice-chair.

She’s been on different treatments over the years, but now uses several medications to help control her symptoms, as well as supplemental oxygen when she flies and sleeps. “Originally, doctors thought I would need a lung transplant because they thought my COPD would get much worse quickly, but it’s been fairly stable,” Chang says. However, she points out, “every time I get an infection, my condition gets worse.”
Chang used to be able to swim up to a half a mile a day, but she can’t swim anymore. She also has to pace herself when it comes to daily life. “If I do too much in too short a period of time, I tend to get sick — and then I’m sick for a long time,” she says. While Chang says she’s still able to do a lot, she has to plan out whether she might need supplemental oxygen, what forms of oxygen she needs to bring, and how long it will last.
“A lot of people think, ‘Oh no, I’ve got COPD and now I’m going to die,’” she says. “That’s what they told me originally — and I didn’t.” It’s now been two decades since her diagnosis, and Chang says, “I’m probably not likely to die anytime soon. My doctors agree that I will probably die of something else.”
Chang urges other people who are struggling with breathing issues to get checked out. “A simple test can see if you have COPD,” she says. “And if you don’t get the treatment that you think you deserve, go somewhere else.”

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