Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
Halloween, April Fools' Day, and Mother's Day may be average American holidays for most, but for me, they mark three important days in my long, emotional journey toward a new pair of lungs.
As a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.
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.
After my transplant team said I was too sick to undergo a double-lung transplant, I was determined to get well enough so that I could.