Iowa woman riding RAGBRAI ahead of getting double lung transplant

At 22 and newly married, Barb Heenan was told she might not make it to 30. She's now 53, riding in her fourth RAGBRAI, anticipating that sometime in the coming months she'll receive a double lung transplant.

• Barb has Scleroderma, a progressive autoimmune disorder, in which the body over-produces collagen. Her lungs are hardening from the inside.
• Heenan is on oxygen and she has a support team, including her husband Mike, who ride with her and carry the extra tanks.
• "I'm born and raised in Iowa and so I always wanted to do RAGBRAI, and so I was like well, if I'm going to do it, I'd better do it before I deteriorate too much because it is a progressive illness," said Heenan.
• Follow Barb and her friend, Randine, on their Facebook page, Sclero-What?

BROADCAST TRANSCRIPT:

Riding Ragbrai is a challenge for anyone, but imagine doing it when you need a lung transplant. I'm your southwest Iowa neighborhood reporter, Katrina Markel in Red Oak where I caught up with an Iowa woman who's riding RAGBRAI while on Oxygen.

With every mile, Barb Heenan defies the odds.

"Yesterday, with all the hills, I went through a tank every five miles."

Fifty-three-year-old Heenan is from Des Moines. For 30 years she's lived with Limited Systemic Scleroderma, an autoimmune disorder in which the body produces too much collagen and hardens organs. It's hardening her lungs from the inside.

"I'm born and raised in Iowa and so I always wanted to do RAGBRAI, and so I was like well, if I'm going to do it, I'd better do it before I deteriorate too much because it is a progressive illness," said Heenan.

She rode RAGBRAI in 2017, ‘18, and ‘19, but this is the first time with oxygen tanks.

"The difficulty was how to carry e-tanks, which are 29 inches tall and 11 pounds apiece," said Heenan.

But why do it again?

"For me the reason I decided to do it because I knew a double lung transplant was coming, and so, um (getting emotional). Sorry, every time I talk about the lunch transplant...”

Within the next year, she expects to be put on the transplant list. She and husband, Mike, were newlyweds when Barb was diagnosed with scleroderma at 22.

"It was scary when they told us she might not live to 30, well it's going to be scary when she goes into the operating room too," said her husband, Mike.

But Barb knows how to do hard things. She says doctors want her to have strong legs before the transplant, but maybe not like this...

"She doesn't give up and that's why we're here today hauling tanks around,” said Mike. “I apologize in advance to the University of Iowa doctors that told her she can't do RAGBRAI several months ago."

Neighbors can follow Barb's adventures on her "Sclero-What?" Facebook page.