Interesting article

[Guest guest]

Hi everyone! Here is an article from todays Arizona Daily Star about a family raising funds for the Foundation. Leanne is interviewed a bit towards the end of the article. Thought everyone might like to read it.

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Published: 09.14.2008

Pulmonary fibrosis death inspires a fundraiser

By Patty Machelor

ARIZONA DAILY STAR

web site

Want to learn more about pulmonary fibrosis? Visit www.pulmonaryfibrosis.org.

To make a donation for pulmonary fibrosis research, and to learn more about Dirks, visit www.dirkscureforpf.com

If you go

A charity dinner and silent auction to raise money for pulmonary fibrosis research will be held at 6 p.m. on Oct. 4 at the Skyline Country Club, 5200 E. St. s Drive. Auction items include an eight-day Mexican Riviera cruise, a six-day Transatlantic cruise, restaurant gift certificates, gym memberships, pet psychic readings and a variety of other items.

The evening will include a wine-pairing dinner in honor of Dirks. There will also be live jazz piano music, played by Dirks' nephew, Hopper of Boulder, Colo.

The cost is $200 per person. Table sponsorship is also available for $2,000 per table, with seating for eight. All proceeds will be used for research through the Pulmonary Fibrosis Foundation.

Zoë Dirks' father threw great parties in which no small detail was overlooked. Wine was selected with care and flowers graced every table.

Even Dirks' shoes had to fit the evening, his daughter said. At Thanksgiving dinner the year before he died, he secretly exchanged loafers for new Dr. Martens after Zoë and a family friend teased him about his slightly tattered shoes.

In early October, Dirks will be remembered at a silent auction and dinner emphasizing his love of delicious food and good wine. The event is being sponsored by his daughter as well as his wife of 36-years, Carlinda, to raise money for pulmonary fibrosis research.

It was this poorly understood disease that killed Dirks in August 2007 at age 62.

Dirks' rapid decline shocked his family. They had worried about his heart after Dirks' father died in his 50s of heart disease, Zoë said, but her father's heart was fine.

Dirks was an avid runner, and a healthy eater. He didn't smoke. And his family said he was an optimist who laughed and joked a lot, and enjoyed few things more than making other people happy.

"You think you've got years and years," said Zoë, 33, of her father's death.

Doctors are baffled over why someone like Dirks develops pulmonary fibrosis.

Dr. Anita Kadikar said that in many cases, there's a pre-existing condition such as lupus or asbestos exposure that leads to pulmonary fibrosis. In other cases, such as with Dirks, the cause is unknown. In these cases, the condition is called idiopathic pulmonary fibrosis.

About 40,000 people in the United States die of pulmonary fibrosis each year, according to the Pulmonary Fibrosis Foundation's Web site.

When someone has the disease, their lungs become scarred and, gradually, the air sacs are replaced by hardened tissue. As the tissue becomes thicker, it's no longer able to transfer oxygen into the bloodstream.

Dirks had noticed minor changes in his breathing a couple of years before his death, mostly when he exercised.

When some of the symptoms — shortness of breath and a dry, hacking cough — became more pronounced about a year before he died, everyone thought he was suffering from adult-onset asthma and bad allergies.

He eventually stopped being able to enjoy spicy foods. Running became a chore, and then impossible.

When Dirks and his family visited his 92-year-old mother in New York state at Christmas that year, Zoë said her father felt good for the first time in months.

He could drink wine, which normally set off coughing fits, and walked up stairs without becoming breathless.

Carlinda said they wanted to believe it was due to severe allergies, and latched onto the idea that the cold, sterile air in New York was what helped.

But after they returned, things worsened quickly.

"I think pulmonary fibrosis was always at the back of my mind, especially after Christmas when things got so much worse," Carlinda said. Dirks lost about 30 pounds.

"We knew then it was something bad. It wasn't allergies," she said.

By June 2007, Dirks was using oxygen regularly. In July, six weeks before he died, he was diagnosed with pulmonary fibrosis.

Kadikar, a Phoenix-based pulmonologist who used to live in Tucson, said pulmonary fibrosis patients make up a large part of her practice.

Many forms of the disease are not deadly, she said, but when it does not respond to standard treatments, such as steroids, there's little doctors can do.

That was the case with Dirks.

"Sometimes there's no rhyme or reason as to why people get this disease," she said.

Leanne Storch, executive director of the Pulmonary Fibrosis Foundation in Chicago, said the disease is often misdiagnosed, although she was diagnosed correctly when she first sought help in 2003.

"I was one of the luckier ones," said Storch, 50, of her doctor's initial insights. "I grew up in secondhand smoke, plus I was a smoker. I don't know if it's one of the things that causes it, but it certainly doesn't help the situation."

She is grateful that she's been able to manage the disease so far. Storch said her boss, Dr. Rosenzweig, has lived with pulmonary fibrosis for 15 years.

"I'm surpassing the odds," she said. "At the moment, it's three to five years."

all areas

web site

Want to learn more about pulmonary fibrosis? Visit www.pulmonaryfibrosis.org.

To make a donation for pulmonary fibrosis research, and to learn more about Dirks, visit www.dirkscureforpf.com

If you go

A charity dinner and silent auction to raise money for pulmonary fibrosis research will be held at 6 p.m. on Oct. 4 at the Skyline Country Club, 5200 E. St. s Drive. Auction items include an eight-day Mexican Riviera cruise, a six-day Transatlantic cruise, restaurant gift certificates, gym memberships, pet psychic readings and a variety of other items.

The evening will include a wine-pairing dinner in honor of Dirks. There will also be live jazz piano music, played by Dirks' nephew, Hopper of Boulder, Colo.

The cost is $200 per person. Table sponsorship is also available for $2,000 per table, with seating for eight. All proceeds will be used for research through the Pulmonary Fibrosis Foundation.

â— Contact reporter Patty Machelor at 235-0308 or pmachelor@....