- Associated Press - Friday, April 11, 2014

LAWRENCE, Kan. (AP) - David Jensen is waiting. Waiting for new lungs, and a new life.

In the nearly 20 years since doctors diagnosed the Lawrence resident with a genetic disorder known as alpha-1, Jensen’s lungs have degenerated, slowly taking with them his strength, livelihood, financial stability and independence.

Jensen, 53, would like to get those back.

He believes he’s very close, even as his physical condition slips farther away.

Jensen, wearing blue jeans and a sleeveless black T-shirt, is sitting on the edge of his bed at Lawrence Memorial Hospital, where he’s spent the past several weeks fighting severe bronchitis. Tubes snake around his nose and ears.

Explaining how he got there, Jensen stops every few sentences, squeezes in several long sips of air, then continues, the Lawrence Journal-World reported (http://bit.ly/1h0A7tC ).

He had bronchitis when a chest X-ray at an urgent care clinic showed abnormal spots on his lungs. A doctor familiar with alpha-1 ordered a blood test, revealing Jensen - then 34 - had it.

Alpha-1 antitrypsin deficiency affects one in every 1,500 to 3,500 people with European ancestry, according to the National Institutes of Health. With symptoms similar to chronic obstructive pulmonary disease or asthma, it often goes undiagnosed.

In people with alpha-1, the liver fails to release a protein that protects the lungs from inflammation caused by infection and inhaled irritants, according to the Alpha-1 Foundation. The protein building up in the liver can cause problems there, too.

If the condition is detected early enough, replacement therapy can keep symptoms manageable, Jensen said. That was not the case for him.

“In the beginning it was a shock,” Jensen said. “As time went by, I realized I couldn’t breathe as well, and it became reality that I could die from this disease.”

Jensen quit smoking immediately after being diagnosed. But his job was in heavy construction, complete with dust, dirt and welding. He continued about six years before starting his own painting business, which he worked hard at as long as he was able.

“I couldn’t get out and do what I could do before,” he said.

His wife at the time bore most of the financial burden, Jensen said. The two are recently divorced, Jensen has filed for bankruptcy, and for the past year has relied on help from friends to continue living at home.

If there’s any upside to having only 10 percent lung function, it’s that you’re in bad enough shape to become a priority on the transplant list.

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