Dan Estep Becomes Advocate in PF Fight
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By TERRY RINDFLEISCH | firstname.lastname@example.org lacrossetribune.com | Posted: Wednesday, November 10, 2010 12:30 am |
Dan Estep has a deadly disease that has no cure and no FDA-approved treatment. The La Crosse man has a disease that kills 40,000 Americans each year, the same number who die from breast cancer.
While breast cancer has overwhelming public awareness, support and funding, Estep’s disease — pulmonary fibrosis — is almost a secret, silent medical condition.
Pulmonary fibrosis suffers from the lack of national focus and government-supported funding to find a cure, or at least a viable treatment, Estep said.
Estep is trying to change that. He has accepted the role of a spokesman for the disease in Wisconsin.
He is spreading public awareness of the disease and will go to Washington, D.C., in February to meet with lawmakers on bills pending in Congress for more education, advocacy, funding and a patient registry.
“There is a silence with this disease, so I must speak out,” Estep said. “A lot of people are dead three years after their diagnosis.
“I feel grateful that I am not yet dead, and I feel obligated to speak for them,” he said.
Estep’s journey with pulmonary fibrosis began with a bad cold and some congestion in January 2008. He couldn’t sleep and had trouble breathing, and thought he had pneumonia.
A physician ordered a chest X-ray, and Estep received a call from the doctor at 9 p.m. the same day. The doctor wanted another X-ray.
Three weeks passed, and Estep was getting better but was still coughing. A CT scan showed lung scarring. Meanwhile, he searched the Internet for possible diagnoses, and he read a blog from someone with pulmonary fibrosis describing his lungs turning to concrete.
“There were five things it could have been, and I hoped for the least damaging, but it was the worst of them,” he said.
A surgical biopsy confirmed pulmonary fibrosis, a serious disease that causes progressive scarring of the lungs and eventually death.
His wife, Amy, an emergency medicine nurse at Gundersen Lutheran, knew it wasn’t good.
“Her body went limp. I tried to comfort her,” Estep said. “It was like the tablecloth had been pulled from under you. I was numb.”
Dr. Scott Skibo, a Gundersen Lutheran pulmonary disease expert, said pulmonary fibrosis is a “grim prognosis” for his patients. Most of his patients die within three to five years after diagnosis.
“All a physician can do is monitor my decline,” Estep said. “I have been fortunate because my disease has progressed very gradually, more slowly than many other people.”
Skibo monitors Estep’s lung function, which he describes as mild to moderate impairment.
“It’s not an uncommon diagnosis and affects so many people,” Skibo said. “We see a half dozen or more new patients here every month.”
Skibo had a three-year fellowship at Yale University, where he conducted research on on pulmonary fibrosis, looking at inflammatory responses in mice.
“I think we’ll have a drug some day, but it won’t come easily,” Skibo said. “We need appropriate funding for the disease, so we understand the disease so we can develop a treatment.”
Early detection is still important even though it cannot save a life right now, he said. If diagnosed early, patients may be eligible for clinical trials or experimental drugs.
“It also gets you plugged into the transplant system,” Skibo said. “But a lot of people don’t make it to transplant.”
Estep’s diagnosis wasn’t early enough to qualify for a clinical drug trial, but he was hooked up immediately with the University of Wisconsin-Madison lung transplant program.
“I wanted to be plugged into the system in case I needed one,” Estep said. “But a lung transplant is not treatment, it’s a last-ditch effort to prolong my life at best.
“I’m trying to stay as healthy as I can to get a transplant if I need it, but then I also could miss the magic window of getting one,” he said.
Skibo and Estep went to the Twin Cities last month to tape interviews with KSTP-TV, which plans to broadcast a major story on pulmonary fibrosis.
“It’s awe-inspiring that Dan has taken the bull by the horns and is trying to gain support and raise awareness because it’s going to take people like Dan to push forward to find a cure for this disease,” Skibo said.
Estep had contacts from pulmonary fibrosis foundations shortly after diagnosis, but he wasn’t interested in advocacy.
“At first, I was angry. It was not a party I wanted to come to,” he said.
But he changed his mind as he started to learn more about the disease.
“A lot of people are dying prematurely of this disease,” Estep said. “A treatment is too late for me, but the research could benefit your children and grandchildren.
“We want a chance to find a drug to arrest it, or reverse it,” he said.
Estep, who will mark his 48th birthday on Nov. 18, still takes one day at a time and continues to love life. He continues to work with his passion of art, antiques and home restoration.
“I don’t want to die young, but I do want to do something in my life that will benefit others, so good can come from my life,” he said.