CF ‘Fighter’ Weds Amid News She’s Not Likely Candidate for 2nd Double-lung Transplant

News that you’ve just been rejected for a necessary double-lung transplant rarely brings out the best in people.

But Caleigh Haber, 27, a self-described fighter since being diagnosed with cystic fibrosis at birth, simply “wasn’t ready to wave the white flag,” she said in an interview with Cystic Fibrosis News Today.

Instead, Haber, a pastry chef, artist, founder of the Fight2Breathe foundation and former columnist for Cystic Fibrosis News Today decided to press on — and to get married.

Caleigh Haber and Bryan Takayama at their October wedding. (Photos courtesy of Caleigh Haber)

She and Bryan Takayama, who met at a friend’s wedding in her home state of California last year, exchanged vows Oct. 29 in a ceremony rich in “family, friends and strangers” who all reached out to help.

“Bryan and I got engaged in August of this year. I think we both imagined that we would eventually get eloped, on a whim, as both of us have adventurous and spontaneous personalities,” Haber said.

Then came the news that she was not a candidate for a second transplant — a decision she is actively opposing — necessitated after her body in January began rejecting the double-lung transplant she underwent in October 2015.

A social media follower of Haber’s opened her backyard for the ceremony, local businesses kicked in supplies, and vendors donated their services.

She described her wedding as a “dream.”

“It was incredible to see so many people working together to make us feel special,” she said. “I’ve never felt so much adrenaline, excitement, love, support, happiness and optimism in one room.”

Haber and Takayama are hoping to cap the celebration with a seven- to 10-day honeymoon next year in Hawaii, which she has visited but he has not. But these plans depend on her health, and on the couple’s ability to pay for the medical transport and treatment she will need while there.

The requirements for a second double-lung transplant are “very strict,” Haber said, set in place to ensure a person can survive the surgery with a good chance of recovery. These include a healthy weight, stable medication use, adequate bone density, and ably working other organs, like the heart and kidneys.

But Haber’s kidneys are failing in reaction to the medications she has had to take for both her cystic fibrosis and the original transplant, which began to show signs of rejection in January 2017 and continued to decline despite high-dose intravenous steroid use.

As a result, she is also struggling to maintain the weight and body mass index required for a second lung transplant, “even while using a
feeding tube and eating weight supplements,” she said.

Takayama visited with Haber often during hosptial stays.

All but three medical centers have rejected her appeal for another transplant, and Haber is well aware of the uphill battle that awaits.

She’s keeping her focus on the possibilities each day might bring.

An initial reaction — finding a “cute little home in Hawaii to live out the rest of my days” — gave way to a mutual decision “not to waste a day of our lives living with the what ifs,” she said. “Right now, we’re on a search for a new transplant and living our happily-ever-after in the meantime.”

Haber set up a GoFundMe page to help cover the honeymoon’s costs, which will be considerable because her health insurance doesn’t cover out-of-state medical needs or treatment.

Extra money that might be raised through the effort, she said, will “be given back to the community” through her Fight2Breathe Foundation, which also can be accessed through Facebook and Instagram.

“I stop to pause often and thank the universe for the support it has given me in my life,” she said.