Patient organizes fundraiser to raise awareness of debilitating disease

(SACRAMENTO)

Forrest Reed is on a mission to make every breath count.

Years after being diagnosed with idiopathic pulmonary fibrosis, a life-threatening disease that causes scarring of the lungs, Reed found his way to UC Davis Health and its Pulmonary Rehabilitation Clinic.

He's received optimal medical care, and ongoing support from Pulmonary Fibrosis Foundation. He's even adopted the mentality of "making every breath count."

"This has become my mantra, so much so that I had it tattooed on my left forearm as a constant reminder," said Reed. "I know that this disease can be unpredictable and cruel, but I remain steadfast in my commitment to do everything that is medically advisable to extend my life and make a difference."

Reed is so committed to making life better for others with pulmonary fibrosis that he's organized a fundraiser to boost research into the disease.

On Oct. 3, he will host the first benefit concert for the Pulmonary Fibrosis Foundation in Sacramento. Saxophonist Gerald Albright, one of the finest contemporary jazz artists and nine-time Grammy nominee, will headline the show.

"I am proud to lead the way toward working to create a world without pulmonary fibrosis," Reed said. "Because of the work of the Pulmonary Fibrosis Foundation, there is hope for individuals like me living with pulmonary fibrosis and their families."

I am proud to lead the way toward working to create a world without pulmonary fibrosis. Because of the work of the Pulmonary Fibrosis Foundation, there is hope for individuals, like me, living with pulmonary fibrosis and their families." -Forrest Reed

What is idiopathic pulmonary fibrosis?

Reed is one of more than 250,000 Americans living with idiopathic pulmonary fibrosis, or IPF. More than 50,000 new cases are diagnosed annually. The word "idiopathic" means it has no known cause.

IPF is a disease that causes scarring (fibrosis) of the lungs. The scarring, in turn, causes stiffness in the lungs and leads to difficulty breathing. Lung damage from IPF is irreversible and worsens over time. The estimated mean survival is 3-5 years from the time of diagnosis but is slowly increasing with better treatments.

"With the knowledge that idiopathic pulmonary fibrosis is progressively debilitating and without a cure, each breath felt much more precious, each day more precious. My gratitude for each day I'm granted grew exponentially," Reed explained. "I realized that it was imperative to learn as much as I could about idiopathic pulmonary fibrosis so I could maximize my longevity and have the best quality of life."

Pulmonary rehab staff check Forrest Reed's oxygen levels during his exercises

Pulmonary rehab at UC Davis Health

Reed was diagnosed at another health-care organization in Sacramento. As he researched the condition, he discovered through the local Pulmonary Fibrosis Foundation that UC Davis Health had a Pulmonary Rehabilitation Clinic

"Throughout my journey I have learned an important lesson - knowledge is power. Having good information empowers you to make informed decisions about your medical care and self-care," said Reed. "It is important to educate yourself so that you can create the best treatment plan and assemble the best medical team by utilizing the vital resources available to you."

Pulmonary rehabilitation at UC Davis Health is accredited by the American Association of Cardiovascular and Pulmonary Rehabilitation. The program empowers patients with lung conditions to improve their quality of life through education, exercise, motivation and support. The multidisciplinary team of specialists offer a wide range of care including a comprehensive evaluation, monitored and supervised exercise, education, psychosocial support and nutritional guidance.

"I was already doing some pulmonary rehab with another provider, but when I began pulmonary rehab at UC Davis, I found that their program was far superior, especially in disease education," Reed said. "There I learned about the need for pacing and planning and to keep moving with regular exercise. I also learned that idiopathic pulmonary fibrosis could create a psychological fear of exertion that causes people to be less active, and this inactivity can accelerate disease progression."

Reed is a remarkable patient. He recently set a new UC Davis Health Pulmonary Rehab record: he exercised for a length of 600 meters - the farthest of any patient - during a six-minute walk. (That combination is the metric used by the federal government to determine if Medicare will pay for full-time oxygen.)

Reed is grateful for his care.

"The entire team at UC Davis has been critical in slowing the progression of my IPF and improving my quality of my life," added Reed.

Benefit concert for the Pulmonary Fibrosis Foundation

The benefit concert for the Pulmonary Fibrosis Foundation will be held at the Crest Theater in downtown Sacramento on Oct. 3. Tickets can be purchased online.

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