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.
Looking back on my time spent in the hospital for labor, delivery, and recovery, I now understand the importance of planning and asking questions in preparation for giving birth. Here are some of the questions I wished I had asked before going into labor.
Sometimes during weak moments, when my lung function has dropped despite doing everything in my power to hold off the destruction, I think, “What's the point?” Then I remind myself of the larger goal …
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
After being told at the age of 14 that I was probably infertile, the day finally came when this news mattered to me. But with IVF and the support of our church, my wife and I are now the proud parents of three biological children.
I've known for a while that pregnancy isn't an option for me due to complications related to my cystic fibrosis. Now that my husband and I are planning for children, here are some of the thoughts and considerations that impacted our family planning decisions.
Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
Dr. John P. Clancy shares new developments in drugs that restore airway surface liquid in the lungs of people with cystic fibrosis, making it easier to clear mucus.
Dr. James Chmiel shares new developments in drugs to reduce inflammation in the lungs and help prevent lung damage.