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Time ran out

On their honeymoon trip to Disney World in 1989, Shelley W. developed what she and her husband Rob thought was asthma. She had difficulty breathing and felt light-headed. It turned out to be primary pulmonary hypertension, or high blood pressure in the lungs.

Time Ran OutThe two had known each other for about three years, meeting through their shared interest in medieval history and the Society of Creative Anachronism (SCA). While carpooling to an SCA event, the two were introduced. Throughout the event, Shelley, 43, kept trying to find someone for Rob, who was 16 years her junior, to date. "It didn't work," Rob recalls. "We ended up going to all the events together, and somewhere along the line it went from traveling to dating. She robbed the cradle," he jokes.
 
Rob, a software engineer, found Shelley an intriguing conversationalist with a high IQ, and common interests. An art history graduate from Berkeley and UC-Davis, "Shelley had an amazing memory and loved to figure things out," he explains. "She loved books—science fiction, mysteries, and medieval history. And she was a phenomenal cook."
 
Shelley's diagnosis with pulmonary hypertension, however, began a medical odyssey for the couple that would last throughout their 15-year marriage. The high pressure in her lungs meant that her lungs were restricting blood flow, and therefore not doing their job of oxygenating her blood supply. The pressure was also causing damage to her heart.
 
After undergoing extensive tests, Shelley was placed on the transplant list where she waited for five years before receiving a successful double-lung transplant in 1995 at a St. Louis-hospital. During her wait on the transplant list, she also required heart surgery. With all of the turmoil, Rob knew they were facing difficult odds.
 
"We knew the success rate for transplants was not very good," he explains. "Fifty percent for getting off the operating table; 70 percent for surviving one year; 40 percent for surviving five years; and after that, it was single digits. Once you've had a double-lung transplant, you know you're not long for this world."
 
Remarkably, Shelley was able to defy the odds and live for nine more years after her transplant before succumbing to complications of a stroke and heart failure in 2004, at age 58.
 
"She had been fighting a variety of things in the last year," Rob says. "The transplant drugs were becoming toxic to her kidney and liver. She had to go on dialysis. It had become a huge medical nightmare."
 
After his wife of 15 years passed away, Rob, 44, says he was relieved for her to be no longer suffering, but the reality of losing his best friend was just hitting: it was hard to focus on everyday tasks. "I called some friends who came over and took care of my dogs, and made sure they got fed. I was really lucky that one friend basically took over the funeral arrangements."
 
Rob says he and Shelley had talked about some aspects of her impending death beforehand, such as wills, medical directives, and the fact that she wanted to be cremated. They also benefited because his company offered spousal life insurance with no medical exam. The fact that he had good medical coverage meant that there wasn't a lot of lingering debt from her care.
 
"We had some of the financial pieces figured out, but we didn't discuss what to do with her family heirlooms," he says. "I don't know all of what they are or what she wanted to have done. We didn't plan that part out. We should have."
 
In the last two years, Rob has drawn support from friends and family. Last year, he treated himself to a fancy new Nikon digital camera after his parents invited him on an Alaskan cruise with them. He's taking a photography class now, traveling to visit friends in the SCA, and slowly trying to heal from the devastating loss.
 
And he's continued attending an organ transplant support group from time to time—one that he and Shelley had attended. At one meeting, a speaker directly addressed the topic of preparing for death. "The speaker said that 'At some point, that organ is going to fail. You're going to die. And you're going to die sooner rather than later, so you need to think about plans for that.’"
 
These days, Rob is trying to focus again on the living part.