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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.
Jensen is now No. 1.
Each day he awaits a call from University of Colorado Hospital, chosen because his siblings and father live nearby, and hospitals want the people receiving coveted new organs to have as much support as possible to ensure success.
Jensen made the hospital's transplant list in October and got that call in November — right after being treated for shingles, making him ineligible until the virus was out of his system. Again, the hospital wants transplant patients to succeed.
"They have to be healthy all over besides their lung disease," lung transplant Coordinator Heidi Bougher said. "It's a huge surgery."
The University of Colorado Hospital performed 21 double lung transplants last year, Bougher said. Obtaining a full set of healthy, undamaged lungs is among the first challenges of double transplants, Bougher said. Then, lungs must match the recipient's blood type and body size.
Finally the recipient has to get to the hospital — in four hours or less. Bougher said the hospital does arrange for patients to be flown in from out of state, though it's better if they live nearby.
Jensen plans to move in with his sister in Denver but must arrange in-home care. While he has health insurance, he said, it doesn't pay for the service, so he's working on figuring something out.
Jensen believes he'll get a pair of lungs soon. And that they'll work. And that they'll last longer than the average expectancy of five to seven years.
And that when he gets back to Lawrence and runs a 5k with his youngest son, probably sometime next year, he'll call the newspaper to see about being interviewed for a follow-up story.
Jensen focuses on certain things to keep his spirits up.
There's other transplant survivors with success stories, the possibility of getting a job again, people from his church expressing they care, his three grown children and especially the little one, 8-year-old Isaac Hartz-Jensen, whose face Jensen has tattooed on his right arm.
"I can get pretty down real fast about what's going on," Jensen said. "He just snaps the life into me and keeps me going."
Jensen said he and Isaac have a pact to do all kinds of things once he gets well, like play basketball and run around South Park.
"I've been an armchair dad," Jensen said.
"Waiting's hard."
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Information from: Lawrence (Kan.) Journal-World, http://www.ljworld.com
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