‘The Lord’s given me this time’

Published 9:10 am Saturday, December 5, 2009

For as long as he could remember, Duwayne Kirchner was always being diagnosed and treated for bronchitis.

But it wasn’t until he was 49 — at the top of his game in the insurance field — when he was finally diagnosed with the real source of his problems: Alpha-1 lung disease.

“I got a letter telling me what I had. It said there was no treatment. I put the letter away,” he recalled.

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He continued to work six more years, until a doctor told him he could stop working and take care of himself, or he could die. “To me, that wasn’t a choice,” Kirchner recalled.

“The stress got to be too much,” he said. “At 55 I had to walk away from 1,500 clients.”

Kirchner’s brother also has the disease and was tested for it after Duwayne was diagnosed. Two of their three sisters are carriers of the disease, and the third was not affected.

Alpha-1 is an antitrypsin deficiency that is passed from parents to their children through their genes. According to the Web site, alphaone.org, the condition may result in serious lung or liver disease at various ages in life.

For each trait a person inherits, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective antitrypsin genes — one from their mother and one from their father.

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin, or AAT, that is provided by the liver. The main function of AAT is to protect the lungs the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke.

“It affects the gene that helps clean the lungs out,” said Kirchner — hence the reason he was always being treated for bronchitis. Kirchner’s disease is complicated by diabetes and an erratic heartbeat.

He said he is grateful neither of his sons were affected by it.

Even though he takes care of himself, he still gets infections about twice a year, he said. He knows other people who have them monthly, he added.

“Duwayne is not a complainer,” said his wife, Margie.

“I usually know when I have it (an infection),” he said.

Because he was in the insurance business, he had the foresight to purchase an extra health insurance supplement. Treatment is very expensive, he said, estimating the disease has cost him and insurance companies more than $5 million over 18 1/2 years.

For a time in 1991, he was actually in a wheelchair. He said he doesn’t go out a lot because it’s hard traveling with a 50-pound oxygen tank.

“That’s OK, because he’s got a wife who loves to stay at home,” Margie said.

Kirchner takes some 18 different drugs and supplements, receives regular intravenous therapy and has been on oxygen since August of 1999. He walks on a treadmill regularly and remains active at Zion Lutheran Church. He lost 100 pounds 17 years ago.

“It’s not a death sentence,” he said of the disease he was diagnosed with more than 20 years ago. “You do what you can and stay involved.

“The Lord’s given me this time. I’m making the most of it,” Kirchner added.

Since he’s around the house a lot, he learned to cook. His specialties are homemade soups (vegetable beef and chicken noodle). He also enjoys baking.

Kirchner said his grandchildren, Landon and Kaedyn, also keep him going.

“It’s by the grace of God and the faith I have in Jesus Christ that I’m still here,” he said.

It’s been estimated that about one in every 2,500 Americans have Alpha-1. Kirchner said he knows there are other people in the community with the disease, but because of privacy laws, their names cannot be released to him. He’s previously been part of a regional support group for people with Alpha-1, and would like to see one going again. The nearest one is in the Twin Cities.

“My brother in Wisconsin is part of a very active support group,” he added.

Anyone with the disease who would like to be part of a support group is asked to call Kirchner at 377-2120.

“It’s a chance to share what you know and to learn that it’s a not disease that will kill. What people need is information,” Kirchner said. He is in touch regularly with the Alpha-1 coordinator at Mayo Clinic and has a toll-free informational line to call for information.