Patient stories

Caleigh and Bryan Takayama: True Love and Triumph

This story is practically a modern fairytale with a huge Cystic Fibrosis twist.

Caleigh (pronounced Cay-lah) grew up in Orange County, California while Bryan grew up in “middle of nowhere”, rural Ohio. Caleigh, who has CF, a genetic lung disease, had just come off ECMO having been in a coma from a recent infection when she last minute decided to attend a friend’s wedding. That is where Bryan, her now husband was, as well, attending on the other side of the wedding party.  While neither of them planned on going the wedding, fate had other plans.

To rewind a little, Caleigh was diagnosed with CF at birth due to meconium ileus, a common complication in infants with cystic fibrosis. After birth, her original doctor only prescribed enzymes for her CF medical regimen. Being a baby who did not manage her own stool, the enzymes reacted with other parts of her body as an effect of wearing diapers. Her mom saw several symptoms of a lethargic and sick baby and knew that she needed to find a new doctor. Thanks to the CFF’s website, they found a children’s hospital which provided immensely better support. 

Growing up, Caleigh had milder symptoms and even partook in sports! She did competitive gymnastics, cheerleading and track. Her first hospital visit was 7th grade and for the rest of her childhood she had yearly tune-ups. In high school, her health required more attention, but she was still able to go about her activities with an IV. Once she stopped working out and started working in the adult world, her symptoms progressed. Having recently flown the coop, she was compliant to her medical regimen, but not eating the healthiest and working without much rest which negatively affected her health. Work became far too taxing and her health deteriorated. This resulted in a double lung transplant in June of 2015. 

Caleigh said her CF has significantly contributed to who she has become and is continuing to be. She’s learned to not be so judgmental towards others. Having an invisible disease has helped her see that firsthand because “you don’t always know what’s going on behind the scenes.” She greatly values intellectual conversations. She does not care so much about surface level conversations, but rather knowing in depth who a person is. She’d rather have one deep conversation than 100 surface level ones. She notes that family is by far the most important thing. “It’s not just my disease, it’s my whole family’s” which is prevalent when they and her friends show up for her when she’s sick. Caleigh has managed to change the way that her brain works to be more positive which is crucial for mental and emotional being. 

As an outsider, Bryan mentioned how wild it was learning about cystic fibrosis from Caleigh. His only previous understanding of the illness was knowing a girl in high school who had it, but even then, he did not fully understand. He warmly acknowledged how incredible of a job Caleigh did at educating him. He learned quickly, based on Caleigh’s condition, how incredibly brutal it can be and how quickly it can take effect not just to the lungs but other places as well. It’s much more than just a lung illness and causes physical and mental issues simultaneously. Mostly, it’s taught Bryan to slow down. Prior to Caleigh, he had a 10 year plan and being with her and understanding the value of the present day is a lesson that he learned very quickly. 

Fast forwarding to October 2016, the wedding in Laguna Beach was Caleigh and Bryan’s first encounter. Right after, Caleigh had stomach surgery and Bryan flew off to Ireland for a month. Upon his return, he visited her in California and then she visited him in Cleveland. It’s fair to note that Caleigh was ill prepared for the bitter winter cold of Ohio and was not fully aware of the risks or complications that could occur because of it. 

After 4 months together, they moved in and they married, at exactly one year to the day they met. Their engagement party turned into the wedding! After their wedding Caleigh became very ill and was diagnosed with chronic organ rejection. She quickly became critical and was transferred from Northern California to UCLA hospital. Bryan by her side the entire battle, lived in the hospital with Caleigh for 5 months while they waited for another lifesaving double lung transplant. Caleigh received new lungs in June of 2018. Caleigh and Bryan said, “While there were tough times in the hospital, it has brought us closer. CF years aren’t the same as human years – we have been able to know and understand each other way deeper and quicker than a normal relationship. It has been a great learning experience.” 

Their future is bright and full of adventure as Caleigh has come to a full recovery. While they know they must always place health as a priority, they want to travel more, and Caleigh wants to go out of her comfort zone.  She’d like to grow her foundation, Fight2Breathe, and eventually start a family. For now, they’ll stick to having their puppy. For Bryan, he wants Caleigh back to her 100% however that means. Their recommendations for those where one of the partner’s has CF, is to find your own independence. It’s not necessary to do everything together or to be codependent but rather important to best know your own passions and goals while appreciating your relationship. The only way to truly succeed is by being fully transparent about your feelings while in the fight because if you don’t, resentment will build up. Caleigh is extremely hopeful for the future of CF and genuinely believes that a cure could be discovered within their lifetime. She doesn’t want CF to have any prevalence for future generations, just an old-time disease in the history books. Like many, she hopes CF will become extinct. 

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