Robert Stoker, like most COPDers, was first told he had asthma before his COPD diagnosis.
“My internist treated it like asthma to see if it developed into something worse, and yes, it did get worse. I started doing PFTs and he realized it was more [than asthma]. So he sent me to an allergist, who had just read an article on Alpha-1 and COPD,” Stoker says. “He called me in and said, ‘Look. I think [what you have] is something called Alpha-1, that’s why you’re progressing the way you are.’ I asked what the upside was, and he said, ‘Well, at least we know what we’re dealing with.’”
Stoker says he went home to read up about Alpha-1 and COPD, and in the next week read everything he could get his hands on about them.
“At the time I had worked for a pharmaceutical company and I talked to people in charge of the medical department and I read that I had something perhaps a bit more serious than I thought,” he says.
Stoker says he had a “double whammy” with his Alpha-1 in that he grew up in Southern California during the worst of the smog years, and smoked for about 15 years, starting when he was in college. He quit smoking five years before he was diagnosed in 1995.
“At that point [of diagnosis] unfortunately my wife is a pharmacist and has access to the Internet and medical information, and she started to get nervous. I tried to reassure her, telling her it was a slow progressing disease, and we had plenty of time,” Stoker says. “But I knew this was not a great thing to have. I talked to my allergist who readily admitted he didn’t know much about it, but set up a pulmonologist appointment for me.”
Unfortunately, Stoker’s first pulmonologist was not a proponent of Alpha-1 as a disease and didn’t believe in augmentation therapy, so Stoker switched to Lahey Clinic.
“I quite frankly couldn’t be happier with them [Lahey]. They were more empowering in terms of dealing with patients and getting patients to be a little more aggressive in their own treatment,” Stoker says. “The first day I went in, and they told me about exercising, eating right, and doing all the things to avoid exacerbations, treating infections early, all to have a higher quality of life.
“They encouraged me to know what kind of lungs I have, and to look at other alternatives. They gave me hope, and pretty much set me on the path of [the mindset of] ‘I have COPD, I have Alpha-1, and it’s not how I’m going to categorize myself going forward,’” Stoker says.
Stoker says he’s been able to instill an attitude along the lines of, “just go with it.”
“Some people tell me that I’m ‘whistling past the graveyard’ but I keep a really good attitude, and think, ‘Hey, I can beat this, and deal with this, and certainly be ahead of the game.’”
Stoker, 55, lives in Derry, New Hampshire with wife Margaret, and says she has been his biggest supporter.
“She has certainly done more than anybody should ever be expected to do. I can’t say enough good things about her. She’s been there with me right from the start,” he says.
Up until December of 2010 Stoker was a pharmaceutical sales representative for 35 years, and was in and out of doctor’s offices and hospitals all day long.
“What made me finally stop working was that I went active on the transplant list [for a double lung transplant]. I started my evaluation for a transplant five, six years ago, when I was healthier,” he says.
Stoker, who is on oxygen 24/7, says he started using it about 10 years ago just at night. He attributes being able to work as long as he did because he was using oxygen.
In general, Stoker says having an exacerbation or getting pneumonia is not acceptable and tries to stay as healthy as he can through exercise and pulmonary rehab. Those combined with support of his wife and daughter Madelaine, Stoker has many motivating factors in his life.