I spent 2020 in COVID-19 quarantine and in the hospital separated from my family while waiting for transplant. I'm very grateful that the call came and I have new lungs -- and a new life.
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I didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.
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.
Trikafta® has done wonders for my health but not my waistline. I was relieved to find out, however, that I wasn't alone in my concern about my sudden weight gain and that bringing the topic up to my care team didn't mean that I wasn't grateful for all Trikafta has done for me.
When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
Although they have been full of physical and emotional challenges, as well as life interruptions, multiple transplants have helped me become the person I am.
The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.
A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
Deciding to get on the double-lung transplant waiting list was a very difficult decision, emotionally. I was lucky my care team recommended early referral. It gave me the time to process my emotions about transplant and make an educated decision.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.