It’s not often a doctor feels the same pain his patients experience – especially on purpose.

But UAB’s Raymond L. Benza, M.D., did just that when he climbed nearly 14,000 feet to cause a temporary form of pulmonary hypertension, a rare blood-vessel disorder of the lungs.

Benza climbed to the windswept granite summit of the Grand Teton in Jackson Hole, Wyo., with five friends as part of a fund raiser for the non-profit Pulmonary Hypertension Association (PHA) and in memory of his friend and former patient Katherine Hanks, who succumbed to the disease this year.

“We thought this was a way we could try to give back more, by putting ourselves in a position where we feel what our patients feel,” Benza says. “But it turned out to be much more than that.”

Rapidly aggressive disease
The Pulmonary Vascular Disease Program at UAB is the largest in the Southeast that treats pulmonary arterial hypertension, a deadly and devastating disease that affects primarily women in their child-bearing years. It’s uniformly fatal without therapy within two years of diagnosis.

“It’s a disease that brings much pain and suffering,” says Benza, the director of the pulmonary vascular disease program. “You have people pretty much in the prime of their lives that go from being very active to totally incapacitated because of such severe shortness of breath.”

Shortness of breath with minimal exertion is the primary symptom of the disease, along with fatigue, chest pain, dizzy spells and fainting. Pulmonary hypertension is a rare disease, occurring in about six persons per million per year, according to Benza. Pulmonary hypertension is more prevalent in those battling other diseases such as scleroderma or HIV.

Benza decided to climb the Grand Teton after discussing a summer trip with his friends. The group decided on a trip though none of them had ever climbed anything greater than a rock wall.

Benza thought climbing a peak like the Teton was the perfect way to raise money and bring awareness to the disease – especially since people exposed to high altitudes have a natural occurrence of the same symptoms of pulmonary hypertension.

Benza, Edgar Luna, David Johnson, Andrew McGreer, Donald Decker and Kevin Holleran trained three days for the climb after arriving in Jackson Hole. Benza realized quickly the danger in their mission when he fell from the mountain on the training course.

“I knew someone was holding me with the rope, but I was dangling around 200 feet,” Benza says. “In addition to the fear and the apprehension of falling, the thought of not seeing my wife and son again was paralyzing. I thought to myself, ‘This is not even the real mountain and I fell. What’s going to happen when I attempt the 4,000 foot scale in two days?’

“You truly can appreciate the fear that our patients go through not knowing if they’re going to make it to the top of their mountain. You understand they’re wondering what’s going to happen to their family and their children when they’re gone,” he says. “That hit me really hard when I was dangling there on that rope, but it also gave me a renewed sense of strength and determination to carry on and not give up.”

Team effort
The group made an eight-mile hike through the Grand Teton National Park to base camp after training. At 3:30 a.m. the group put on their gear and began their ascent to the summit. They went in two groups on different sides of the mountain, going the first 1,500 feet in darkness. When they reached an area of the mountain where the stone changes color to black – the point of no return – it was decision time. Go for it as a team, or turn back.

Benza said the concept of doing it as a team was striking to him because that’s how his patients are treated – as if they are part of a team.

“It’s not an individual effort,” Benza says. “It’s the patient, my four partners, a team of inpatient and outpatient nurses, a social worker, geneticist and myself. The team effort makes our patients feel supported, just like the team effort on the mountain. If you feel like you’re doing it yourself the fear is overwhelming. But when you have two of your buddies and a guide, the obstacles seem surmountable.”
When both parties reached the summit, Benza says the moment was emotional and overpowering. The fear and apprehension were replaced with calm and peace.

“That’s the thing we wish our patients could achieve as they meet their clinical goals and improve,” Benza says. “We want them to feel less fearful and more comforted. We want them to know that they are being watched and cared for closely – that they truly are being held with a strong rope.”

The group raised the Pulmonary Hyper-tension Association flag at the summit through tears of joy and accomplishment. “Even the people who weren’t on our climb were watching us cheered and clapped,” Benza says.

Remembering Hanks
Benza thought about his patients constantly on his climb, especially Hanks. She was a nurse manager and a constant inspiration to Benza’s team and other patients.

“She was one of those people who knew she was dying, but at the same time never let on that she was succumbing to the disease,” he says. “She always made herself available to visit patients and talk to people about the disease and help with research. When something like this disease happens to such a wonderful person, something burns inside of you. It’s a feeling that it’s just not fair, and you’re driven to do more.”

Raising money to fund research is Benza’s way of doing more. His fund-raiser has secured $18,000 so far, and he will continue accepting donations through the fall. His goal for the PHA is $25,000.
The goal of the PHA is to raise enough money to fund seedling grants for interested investigators with new ideas and new concepts and to encourage more physician scientists to get involved in researching the disease.

“Getting more brilliant people involved early in the game helps us. More people mean more ideas and a better chance to find a cure,” Benza says.

All of the funds raised by Benza will go directly to research.