Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
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When I was pregnant in the early 2000s, there was little information available about cystic fibrosis and pregnancy, and I didn't even know what concerns to address with my providers. I am glad more women with CF have shared their family building experience.
I struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
Because of the shortened life expectancy projected for those with cystic fibrosis, I was always cautious about the idea of having children. Those fears melted away after I started Trikafta® and received the greatest surprise of my life.
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.
I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.
Because of the medications I must take as a result of my lung transplant, I thought it might be too difficult to conceive a baby through in vitro fertilization. I was wrong. I'm expecting a son in November.
Cystic fibrosis is unpredictable and I've found that some of the complications aren't as progressive as the disease.
After a double-lung transplant, I realized I needed to take care of myself to be a good mother to my son.
I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”