The Challenge: Pulmonary Sarcoidosis
Bob Dolence’s long road to transplant began in 1989 with a visit to a dermatologist. The skin lesions Bob suffered proved to be a symptom of sarcoidosis, a disease in which patches of inflamed cells called granulomas form on different parts of the body – most commonly the lungs and sometimes the lymph nodes, eyes and skin, but any soft tissue is vulnerable.
The specific trigger for sarcoidosis remains unclear, but doctors believe it results from an abnormal immune response to something inhaled from the air.
Some people with sarcoidosis experience mild symptoms that may resolve themselves without treatment. In serious cases, however, granulomas can build up in and harm vital organs.
Sarcoidosis affected Bob’s eyes and lungs as well as his skin. Pulmonary sarcoidosis may stiffen the lungs' small air sacs (alveoli) and breathing tubes (bronchioles), so that they can’t hold as much air as healthy lungs.
Severe pulmonary sarcoidosis can lead to formation of scar tissue that warps the structure of the lungs and makes breathing even more difficult. It also interferes with the lungs’ ability to move oxygen into the bloodstream.
For Bob, the disease took a gradual course at first. He was able to maintain his busy life as an engineer, husband, and father of two young children. In 1993, doctors began treating him on and off with prednisone to control the inflammation in his lungs.
As the ’90s drew to a close, Bob’s lung function declined. By 2003, Bob was using supplemental oxygen at night; in 2004, he needed oxygen eight hours a day. At that point Bob’s condition stabilized, and his pulmonologist was optimistic that Bob would be able to live a full life with the help of oxygen.
The Dolence family traded their three-story house for a ranch-style that would not require Bob to climb stairs. In July of 2005, they moved in. Unfortunately, Bob’s health deteriorated steadily throughout the year.
One October morning as Bob got ready for a pulmonologist appointment, he noticed his ankles had become swollen. That day, the pulmonologist told Bob he was suffering from congestive heart failure.
During Bob’s self-described “dark period” of late 2005 – early 2006, he was so dependent on oxygen that he didn’t leave the house without two portable oxygen canisters.
“If one failed, I would lose my breath,” Bob says. “I had to have a backup. It developed to the point where I only left the house to see doctors.”
“The most difficult part for me was the thought that I would be abandoning my family to deal with everything on their own.” He particularly worried about his high-school-age daughter who still lived at home. “My daughter was watching her dad dying. I can only imagine the pain she went through.”
The Path to the UPMC Lung Transplant Program
Several years after Bob’s initial diagnosis, he attended a conference of engineers and professors, many of whom were not native English speakers. As Bob walked through a room full of widely varied accents, “all of a sudden I hear, ‘Bob Dolence, is that you?’ in a Western Pennsylvania dialect.”
The man speaking was a friend of Bob’s from the University of Pittsburgh, where both attended college.
“We kept in touch, but I hadn’t seen him for eight years,” says Bob. “We got to talking, and it turned out he was a pulmonologist—working at UPMC on clinical trials related to sarcoidosis.”
Bob’s old friend offered to help with his treatment, and went on to recommend many of the UPMC specialists who cared for Bob before and after his transplant.
“I knew about UPMC, of course,” says Bob, a Pittsburgh native and with two degrees from Pitt. “I did not know UPMC was a leader in lung transplantation in the nation and likely the world. The stars were lined up.”
The Solution: A Lung Transplant
Bob clearly remembers the days after being placed on the transplant list.
“Late one afternoon, [transplant coordinator] Paul Moran-Pillage called. My wife answered while I was working in my home office. I was going through my files, documenting things and leaving instructions in case I died waiting for a transplant, or in the OR.
“My wife said, ‘It’s for you.’ When I got on the phone, Paul said, ‘Know who this is?’ I told him yes and he asked me, ‘How are you feeling?’
“[Paul said,] ‘We have a set of lungs for you.’” As happens with many listed patients, this call was a false alarm. The lungs did not work out for Bob.
After a couple more false alarms, Bob received a call at 4:00 AM on February 23, 2006. The lungs identified as a match for Bob were coming from the west coast. Bob was wheeled into the operating room at 11:45 PM. Swelling and “lots of fluid” in Bob’s chest complicated his surgery; he spent three days in a drug-induced coma. He remained in the hospital for 25 days.
“The doctor told me, ‘The quicker you get up and move, the quicker you get home.’ So I walked as much as possible,” Bob remembers. “I asked my wife to bring my tennis shoes to the hospital.”
Once home, Bob felt determined to start “getting back into the swing of life” as soon as he could.
“I give Oprah Winfrey a lot of credit for my recovery,” he says. “After a few days of watching her show I realized, ‘I can’t spend my time watching daytime television.’ I got back to work.”
Working from home allowed Bob to be productive without jeopardizing his health.
“I took lots of naps.”
Once he regained his strength, Bob started bicycling and walking. In 2008 he walked 1,000 documented miles—3.5 miles a day, six days a week.
The Result: A New Outlook on Life
Aside from his steady recovery, the years following Bob’s transplant were marked by momentous occasions.
In 2006, Bob’s daughter graduated from high school. The next year brought his son’s graduation from college, as well as Bob’s and his wife’s 25th wedding anniversary. The whole family celebrated with a trip to Las Vegas, where they ended up flying by helicopter to the bottom of the Grand Canyon. Bob says he hadn’t planned on the helicopter ride, “but I thought, ‘Ah, what the heck. You only live once.’”
Bob is just as grateful for the little moments as he is for the big ones. Before his transplant, one of Bob’s doctors asked what made Bob willing to take the risk of major surgery.
“I told him, ‘I want to take the garbage out, cut the grass, and shovel snow,’” recalls Bob. “The doctor said, ‘I’ve never heard that answer before, but it sounds like you’re telling me you just want to live your life.’”
Today, Bob is happy to be doing all of those things; he sees yard work as “uninterrupted think-time” rather than a chore.
Bob is thankful to his immediate family, close friends and the UPMC teams who have nurtured him through his transplant and return to life. He is grateful beyond words for the donor and donor’s family for giving him a second chance.
Bob also spends time with transplant patients who need reassurance and guidance. He volunteered for clinical trials after his transplant, in hopes of contributing to the next transplant breakthrough.
He explained to friends at the time, “I wouldn’t be here without UPMC or the donor. I’m giving back everything I can, and if they can improve [transplantation], I want to help.”
Bob’s treatment and results may not be representative of all similar cases.
Learn More About Sarcoidosis and Lung Transplant
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