The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.
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When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
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.
I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
As a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.