After what seems like an hour and too many clicks to count, you finally did it. You booked your flight! A couple weeks leading up to your departure date, panic starts to set in. You go into operation “no one better get me sick” mode.
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Hear how frequent flier Stacy Motenko keeps herself organized as she turns traveling with CF into a manageable affair.
I grew up on a farm in the countryside in Sweden. My younger brother also has cystic fibrosis, so money was always a little tight in my family, due to the costs of treatments. My classmates would often brag about places they had been on their vacation, England, Stockholm, Greece, and I was very envious.
Planning a last-minute vacation before the end of the summer? We’ve got you covered! All week long we’ll be sharing tips, advice and personal stories on traveling with CF.
Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.
At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
Successfully managing a chronic disease like cystic fibrosis means more than just taking medications. It requires trusting partnerships between people with CF and their families with their CF care teams to develop treatment plans that line up personal life goals with health goals.