24-year-old Cystic Fibrosis patient tackles lifelong illness with determination

This another story of a Cystic Fibrosis patient who was determined to live through her illness by finishing college, getting a job and gettting married. But the severity of her disease meant a lung transplant and she approached that with the same determination.

Brad Barker says goodbye to his wife, Heidi Karn Barker, Dec. 6 before heading to work at Kansas University. Meanwhile, she watied fo her dad, Geroge Karn, to laod some of her belongings for the move to St. Louis, where she waited for a double lung transplant. Photo by Mike Yoder

From the Tonganoxie Mirror in Kansas:
St. Louis — Donning a Green Bay Packers sweatshirt, blue sweatpants and pale pink house boots, 24-year-old Heidi Karn Barker sits in a quiet, one-bedroom apartment across from Barnes-Jewish Hospital where three weeks earlier she had a double lung transplant.

While Heidi no longer sports what she called an oxygen mustache, it’s easy to see that the surgery has taken its toll. She’s sore, tired and nauseated. An e-mail from her husband, Brad Barker, sparks a smile during the gray afternoon.

Her mother, Tracie Karn, of McLouth, and Brad take turns staying with Heidi about every two weeks. This week, it’s mom’s turn.

“It’s difficult just seeing her in discomfort after the surgery and seeing her having to put her life aside in Lawrence and just seeing how much she misses Brad,” Tracie said. “Just what she has been through physically, I can’t even imagine.”

But you won’t hear Heidi complain. She simply focuses on getting better and talks about the positives in her life: the donation, the ability to breathe, family and friends. If she can keep a Popsicle down, she’s grateful.

Heidi was diagnosed with cystic fibrosis at age 18 months. Medications, tests, doctors and hospitals have been part of her life since she can remember. The life expectancy for those with the disease has grown to about 40 years. In 1950, it was less than 5 years.

“Lung failure is the cause of death in around 90 percent of patients,” said Dr. Philip Black, director of the Cystic Fibrosis Center at Children’s Mercy Hospital.

Those with cystic fibrosis produce a thick mucus that clogs up ducts in the lungs and in the pancreas. So, they get a lot of lung congestion, infections and disease.

Most, like Heidi, also have trouble digesting and absorbing foods.

“She’s more severely ill than the average person her age,” Black said. “She had a pretty severe case of it. In essence, all of them are severe cases because they shorten life, but on a scale of severity, her case was toward the higher end.”

But Heidi tried not to let it slow her down.

“She’s a very remarkable lady in that in spite of a fairly severe illness, she kept herself on track to finish college and had a job and got married and went ahead and pursued things that became available to her with a lot of courage,” Black said.

According to family and friends, she has shown that same courage throughout the lung transplant process.

“She is just amazingly strong and brave and she was the most composed throughout all of this compared to anybody else in our family,” Brad said. “She was just really focused. It was never a question of how would she do; it was just a matter of how soon can we get it done.” Read the rest of Heidi's story about getting "the call" and her subsequent successful double-lung transplant.

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