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Happy and Healthy… Together
When Andrea got married at age 44, it was a first, both for her and for Steve.
Adding to the usual anxieties one might feel about tying the knot after a lifetime of singlehood, Andrea worried about the strains her CF would put on a marriage.
She was apprehensive that, despite long talks explaining the disease, Steve, 52, really didn't know what he was getting into. She warned him that in order to keep herself from getting sick, they both would have to make adjustments.
The worst worry: the reality that she would probably leave Steve a widower. "That was an anxiety for me," Andrea said. "And I had to tell him that over and over because he didn't want to hear that."
Andrea met Steve at the neighborhood dog park. On their first date, she told him about her double-lung transplant and her CF. At first, Steve didn't know much beyond what the initials stood for. “I don't remember a specific shock or awe,” Steve says. “She appeared physically attractive. I didn't attach great seriousness to it.”
Since then, Steve has gradually come to better understand the impact the disease has on her, and him. Any kind of respiratory infection could have serious health implication for Andrea, now nine years post-transplant. She carefully monitors how she is feeling and has asked Steve to tell her the minute he feels a cold coming on.
That was a big change for Steve, who grew up believing you "toughed out" a cold and visited the doctor for only big things, like broken arms and having babies.
“It's harder when you live with somebody not having grown up that way,” Andrea says. “It's just a big learning curve. He's definitely better. It's gotten through.”
Steve now pays attention to people coughing or sneezing around them. Sometimes, he insists the couple take a cab rather than the subway, just to be safe. If they take a long flight to see relatives, they try to avoid the holiday season.
Steve makes sure to wash his hands when he comes home from work. “When I sneeze, I have to wonder 'Why am I sneezing?' Is it a cold, or is it an allergy, or is it a feather that flew up my nose?” Steve says. “You have to pay attention to health more, which is not a bad thing.”
But Andrea doesn't want to drive Steve crazy. CF is hard enough without a spouse feeling badgered. “It's sort of like a balance. I don't want to be hammering at him all the time…that's not like a marriage, that's a parental-type of situation,” she says.
The difficulty, Andrea admits, is devoting enough time to her partner, while keeping her health the main focus. “You have to really prioritize yourself and your health. You want to stay well and be longer in the relationship,” Andrea says.
Steve believes Andrea is more attuned to illness than even her own doctors. Soon after the wedding, she noticed she was getting more sinus infections than normal. Scarier still, Andrea's PFTs were declining, and she was coughing up more mucus. She suspected her new husband was making her sick.
Steve, who had regular sinus headaches along with some congestion, dismissed it as chronic sinus trouble he'd had for more than 20 years. He was certain he didn't have a sinus infection. Andrea insisted he see her ENT. Eventually tests showed his sinuses were full of infection and inflammation. He had surgery to fix it. Andrea's infections decreased dramatically. “It definitely changed my life,” Andrea says. “It made me feel much better, more relaxed, that I wasn't going to get a sinus infection.”
The median life expectancy for CF patients has now improved to 37.4 years, up from 32 in 2000.1 As for the long-term prospects of his marriage, Steve sees only longevity. “You just think good thoughts and you stay happy, you know?” he says. “We will grow old together. That's what I believe.”
- 1Cystic Fibrosis Foundation. 2007; Patient Registry Annual Data Report 2007. P.
