By Mila Koumpilova INFORUM
Holly Bergo’s new pulmonologist had one word for her after poring over her CT scan: impressive.
He had never seen lungs so ravaged by illness, with an owner who had clung so gamely to her lifestyle.
That was in 2007, and for more than a year, Bergo kept going: She remained the roving public health nurse known among clients as “Jolly Holly” and the former cheerleader her many friends deemed a “spiritual picker-upper.”
But over the past year, a rare, incurable lung disease has slowly dismantled that life. These days, Bergo is mostly confined to her Moorhead apartment, with only two tasks: Wait for a phone call from the Mayo Clinic summoning her for a double lung transplant surgery and keep breathing.
Well, there’s also comforting the occasional teary friend and joking about meeting a cute doctor at Mayo.
“Holly hasn’t lost her humility and her grace and her humor and her beautiful, outgoing personality,” said Michelle Eldredge, who along with other friends is organizing a July benefit for Bergo.
Not breathing easy
For years, Bergo thought she had asthma. She was misdiagnosed after shortness of breath started hounding her constantly. The meds seemed to help.
Shortly after, she went to get a second bachelor’s in nursing at North Dakota State University, where she’d once been a Bison football cheerleader. When she graduated, she got a job at Cass County Public Health. Climbing the two flights of stairs to her office became an increasingly breath-robbing ordeal.
She kept telling herself she needed to get in better shape. But the breaks she had to take after the first flight of stairs grew longer.
In spring 2007, her doctor ordered a CT scan and, concerned, sent her to a MeritCare pulmonologist. He examined her CT scan – her lungs pocked by cysts like honeycomb, down to 50 percent of their function – and sprung to action. He lined up oxygen tanks and an appointment at Mayo.
Bergo had lymphangioleio-myomatosis, a progressive disease that strikes women in the prime of their lives. It unleashes abnormal muscle cells on patients’ lung, where they form cysts and bore holes in healthy tissue.
The pulmonologist told her there’s no cure, and Bergo’s illness was too far along to enroll in a trial for promising new medication. She would likely need a lung transplant.
“Here’s me, 36, single and looking, wanting to have children, barely two years into my dream job and thinking my asthma is getting worse,” she recalled.
Bergo spent that Friday crying. She was one of only 1,500 women diagnosed with the disease. Experts believe as many as 250,000 go undiagnosed or, like Bergo, misdiagnosed, blithely planning out the rest of their lives.
“That first day was devastating,” she said. “That weekend I was in shock. On Monday, I decided I had to fight.”
Bergo left her oxygen tank in her car before she visited the apartments of clients, some of whom used oxygen themselves. She hid her illness. She didn’t want it to take the fun out of Jolly Holly.
She joked about her ordeal to friends. Nadine Perkins, Bergo’s nurse coordinator at Mayo, remembers her laughing and snapping pictures of staff when she came in for her transplant evaluation.
“At first I was like, ‘Why me?’ ” Bergo says. “Then I decided, ‘Why not me?’ There’s a reason God is making me go through this.”
But the disease was on the march. Bergo spent Christmas and Valentine’s Day after her diagnosis in the hospital with a collapsed lung. That spring, when she could no longer part with her oxygen for long, she had to come clean to her clients.
In the summer, her parents, Bruce and Roxy, moved to the area to help care for her. In the fall, as taking a shower became a strenuous exertion, she had to concede she couldn’t continue on her job.
“Pieces of her life were slowly being taken away,” Eldredge said. “Breathing is her job right now.”
As Bergo climbed the lung transplant list at Mayo, she retreated into her apartment. With a wheelchair and a change of oxygen tanks needed, she said, “It takes a village to bring me out.”
She keeps her cell phone close by her side. She can get the call from Mayo any day now. She has a bag packed and an arrangement to fly to Rochester, Minn., where she needs to get within hours of receiving the call.
There’s no telling how long the wait is going to be: She needs a donor who shares her petite frame and her rare B positive blood type. Her heart is already breaking for the family of the donor who’ll give her a chance to reclaim her life.
Her lung function is down to 16 percent.
She fears she might not survive the five-hour surgery or that her body will reject her new lungs. She worries that eventually her disease might attack her new lungs. But most of the time, she’s strangely calm. All she has to do is breathe.
In the meantime, her friends have rallied around her. They’ve cut her hair for free, dispatched a massage therapist to her apartment and planned a July 31 dinner and auction at the Fargo Holiday Inn.
“It’s amazing how many people she’s touched,” says Bergo’s friend and former colleague Karen Irey, who called her “a good spiritual picker-upper.” “It’s all coming back to her now in full force.”
Stephen Cassivi, Mayo’s director of lung transplantation, says if a set of lungs becomes available on time, a patient like Bergo can make a real comeback, starting with the most basic activity: “Breathing is one of those primordial acts of life we take for granted, but you really notice it when you have to work at it.”
Bergo looks forward to taking a shower without having to sit down several times, keeping up with her nephews and getting her job back: “I will reinvent myself and be better and pay it forward.”
How to help
To help with Holly Bergo’s medical and living expenses, visit http://www.transplants.org, click on “Patients we help” and type her name in the search box.
“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network NEW for Ontario: recycleMe.org Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation