By Joe Tash
The four men who sat around the kitchen table in Carolyn Singer’s Rancho Santa Fe home share a deep appreciation of life’s simple pleasures, from waking up to the smell of coffee brewing to watching a child’s soccer game.
Not that long ago, the men would have found it excruciatingly difficult just to stand up and walk a few steps. But thanks to the life-saving double-lung transplant operation each of the four underwent, the quality of their lives has improved dramatically.
“You go from gasping and fighting for every breath, and having the sense that you’re breathing through a straw or someone is holding their hand over your mouth, to something we all took for granted — that everybody takes for granted — the ability to breathe,” said John McNamara. “We don’t take that for granted anymore.”
Now that the men have survived the surgery and initial recovery period, they want to help others going through the same ordeal, through the newly formed Pulmonary Transplant Foundation. The foundation’s mission includes financial support for patients who need it, public education and awareness, support for research and encouragement of organ donation.
“If it wasn’t for the donor… none of us would be sitting here,” said Peter Konzen, a Rancho Santa Fe resident and Singer’s brother. “We’re so thankful, we want to help too.”
Singer, McNamara and Konzen are all founding members of the foundation’s board. McNamara and Konzen have both received double-lung transplants, and Singer took care of her brother after his 2009 operation. On a recent morning, they were joined for an interview by Bob Moldenhauer and Gary Bland, two fellow double-lung transplant recipients, who also sit on the foundation’s board.
The group met each other through a support group at UCSD Medical Center. All four men suffered from idiopathic pulmonary fibrosis, a progressive disease with no cure that causes the lungs to become brittle and non-pliant, and robs a person of the ability to bring oxygen into his or her lungs.
“Your lungs turn to leather,” McNamara said.
After their surgery, the men learned in their support group of a patient who could not afford the co-payment for required immune-suppressant drugs, and ended up in the hospital.
“That really sounded the alarm for a couple of us. So we started talking about creating something to help patients who had run out of money,” McNamara said.
Transplant patients must take 25 to 30 pills each day, from anti-rejection drugs to antibiotics, and even for those who are insured, the co-payments can add up to hundreds, or even thousands, of dollars each month, the men said.
In addition, transplant recipients must live near the hospital where they had their operation, because of the required follow-up care. For those from out of the area, lodging costs can also become prohibitive, the men said.
The group is currently finalizing its paperwork and application to become a nonprofit organization, which will be able to accept tax deductible contributions.
Another goal of the group is to encourage more people to donate their organs. One common misperception, said Bland, is that older people are not suitable donors.
“You’re never too old to be a donor,” he said.
Only 30 percent of eligible Californians have registered as organ donors, McNamara said. If more people become donors, he said, waiting times for people needing organs would decrease, and survival rates for recipients would increase.
While all four of the men are at least two years out from their transplant surgeries (McNamara had his operation in 2006), they are aware of statistics that show a decreased life expectancy for transplant recipients.
“There is a certain reality, that your time may be more limited than others, but you have to make the most of it and enjoy the time you have,” Moldenhauer said.
“If you get too wrapped up in the statistics, you’re gonna become one,” McNamara said.
Konzen added, “Keep making plans.”
Those who need assistance or want to donate can contact the foundation at firstname.lastname@example.org, or P.O. Box 22069, San Diego, CA, 92192-2069.