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.
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Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
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.
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.
Patrick Flume, MD, is a pulmonologist and the director of the adult cystic fibrosis center at the Medical University of South Carolina and part of my care team. For National Doctor's Day, I had the opportunity to sit down with Dr. Flume and ask him some questions about CF, his approach to CF care, and how it's changed during his career.
The expression, “It takes a village,” sometimes seems to apply to my clinic visits. I like having my family accompany me. They support me emotionally and help me keep track of important health information.
As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
One year. My doctor gave me one year to try to get pregnant before treating me for my infections. Trying to get pregnant while still treating my CF the right way is one of the hardest battles we have had to fight.
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.”
As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.