A diagnosis of pulmonary fibrosis amounts to a death sentence.
A progressive disease in which damaged lungs continue to scar over, it causes difficulty breathing, particularly with the intake of air. There is no cure.
Doctors for Bill Millan and Jim Harris gave each two years to live after diagnosis — unless they could qualify for lung transplants. Both were immediately put on oxygen and have been tethered to oxygen tanks around the clock ever since.
The 2-year mark is long past for the two men, both 64-year-old grandfathers. Both credit the Bon Secours maintenance program, a follow-up to its pulmonary rehab program, with not only their longevity, but their increased independence and improved conditioning.
Both have faced the decision of a lifetime — whether to make the most of their allotted time, letting nature take its course, or whether to brave risky transplant surgery in the hope of adding a few more years.
Despite the similarity of their circumstances, these two men have made radically different choices.
Letting nature run its course
"I was struggling to walk 5 feet," says Millan, a "graduate" of Bon Secours pulmonary rehab program who has been attending the twice-a-week "maintenance program" at Maryview Medical Center in Portsmouth for more than four years, since January 2008.
In rehab, participants learn breathing techniques, such as "pursed lip breathing" (a style 78-year-old workout colleague Jack Lofton calls "smell the roses and blow out the candles") that helps to slow breathing and expand lung capacity. They also train in how to use their diaphragms to breathe. "They teach you some life skills beyond breathing, like how to make a bed without wearing yourself out, how to think your way through the grocery store to conserve the most energy," says Millan. "It has given me so much independence. It has saved my life."
In the maintenance program, work-outs are self-directed, but participants must follow certain protocols, such as taking their blood pressure, oxygen saturation level and heart rate, and must agree to report any problems to the on-site staff therapist. Oxygen is supplied or they can bring their own.
Millan's pulmonary function has actually improved and now he's able to walk the neighborhood and shop, as well as working out on the treadmill and the reclining bike. He not only continues to attend Ebenezer United Methodist Church in Suffolk, but delivers readings. "My pastor thinks I'm an inspiration to others," he says. Trey Steckline, regional director for Bon Secours pulmonary rehab program, notes that Millan's goals are typical of those in the program. "It's the basics, getting a little independence, like going back to church or seeing the inside of WalMart," he says. "The psychological angle is huge with these diseases."
Millan, who retired on disability, had several careers, including hosting a morning show on Yorktown radio, and working in operations for a medical waste company. A resident of Eclipse, he has traveled the globe. He has two married sons who live on the West Coast and an adult daughter who lives with him and his wife. "My eighth grandchild is on the way," he says with some pride.
At first, he worked hard to qualify for a lung transplant, losing the requisite 40 pounds and entering the pulmonary rehab program as mandated. "I kept listening to everyone else. I didn't spend enough time in private thought," he says. Then Millan, who credits a hale appearance to his skin tone, took into account his improved capabilities and the psychic and physical costs of a transplant.
"I'm 64. I've had a good life. I've done the things I wanted to do. And I have made the decision not to have the transplant," he says.
It took him six months to make the decision, and he hasn't wavered. He names a program colleague who has had a transplant. "He comes here and he's so happy," he says. "I just decided I wanted my life to be lived naturally. I have a great faith life, so why am I worried about dying?"
His family has accepted his decision, though his oldest son, 40, has a hard time with it and checks in constantly.
A voracious reader, Millan scans his Kindle when he's not joshing with his colleagues in the program. Right now, he's working his way through the New Testament. "I'm very positive. … I think of things like this program as something God gives me to do, something I have to do."
Fighting for more time
Jim Harris, a 5-foot 8-inch retired IT specialist, weighed 320 pounds when he received his diagnosis three years ago. He has dropped more than 120 pounds in order to qualify for a lung transplant at Duke, which set the bar at 200 pounds. To give himself a margin, he's down to 190.
"I was willing to do whatever it took," says the self-described "foodie" and lover of Krispy Kreme donuts, citing his two young granddaughters, 3-year-old Emily and Haley,11 months, as motivation. He takes care of the duo a couple of days a week. "They gave me the will to keep going. It would be the worst thing in the world to sit here with the blinds drawn," he says. They've never seen him without the 25-pound oxygen canister, "papa's air," that he totes everywhere — to the park, toChuck E. Cheese.
"I'm very active," he adds. Each week, after his "maintenance" workout, he takes his 30-year-old mentally disabled son, Kenny, bowling with his friends. "I have a very full, busy life — a happy life that keeps me from thinking about realities."
After going through the pulmonary rehab program at Riverside, Harris was the first to join the newest Bon Secours maintenance program at Mary Immaculate Hospital, when it opened in October. "It seems like it was heaven-sent for me. I love the program. I look forward to it. It has been very beneficial for me," he says. "I couldn't walk from the car to the grocery store door."
Now, he pushes himself on the treadmill and the bike for 11/2 hours at a stretch twice a week, working up a sweat. "I'm trying to make sure I'm meeting all Duke's criteria. They've already done extensive testing. They want to make sure I'm compliant," he says. That includes finding a local pharmacy that can fill the list of 30+ meds — with 20 hours notice — that he may require after a double-lung transplant. It also means having $10,000 cash in hand and being able to plan on a 30-day stay within 30 minutes of the transplant center while waiting for organs to become available. And he has to send his log sheets from the maintenance program. "I haven't missed a time," he says. "I have trouble slowing down. I want to go wide out, I feel like I want to win a prize."
Harris isn't without his doubts. "If I thought I could live another 15 years like this, I'd take it. The prognosis isn't really good. Fifty to 60 percent are alive five years after a transplant. I'm told you trade one set of symptoms for another. … When you have nothing else though," his voice trails off.
He admits to having been in a deep depression for the first six months, accompanied by a loss of appetite. "We do a lot of nutrition counseling," says respiratory therapist Terri Phillips. "They need a balanced meal and portion control. If you don't eat right, you'll get sick."
Harris likens his rebound to new growth after a forest fire. "Little sprouts come up. I didn't die today, I don't feel like I'm going to die tomorrow… I'm doing so well and I feel so well, I'm amazed."
The Hampton resident recently checked in at Duke to learn his prospects. His older son, Chris, who attends all his doctor appointments, accompanied him. He could have new lungs by Christmas, but they don't want to do it too soon, he cautions. "They want me to get the most mileage I can out of these lungs. I can't just go to another lung store. Sometimes I wonder if I'm doing the right thing. I wonder if nature should take its course," he muses. He has seen post-transplant patients in various stages of recovery, from walking around to wheelchair-bound.
"The surgery scares me," he admits. Then he talks about the birth of each granddaughter and how he attended the baby's first swimming lesson last week and his tone changes. "I really don't want to die. I want to be around for as long as I can for them to know they had a papa who loved them."
Short of breath?
Bon Secours has a comprehensive outpatient pulmonary rehab program at three hospitals in the region: Maryview Medical Center in Portsmouth (757-398-2143); DePaul Medical Center in Norfolk (757-889-4186); and Mary Immaculate Hospital in Newport News (757-947-3606).
Patients, under the direction of a pulmonologist, or lung specialist, typically go through a 10- to 15-week program with two or three visits a week. The treatment draws on the expertise of occupational and respiratory therapists, behavioral health specialists, smoking cessation experts and nutritionists. Participants, including those with asthma, emphysema, COPD and lung cancer, learn breathing techniques and build stamina.
"Graduates" are eligible for an ongoing "maintenance program" in which they work out without direct supervision, but follow certain protocols and are monitored by a health professional.