Beth Evans, a 48-year-old with CF, is currently playing the lung transplantation “pre-wait waiting game.” She is sick enough to need new lungs, but not quite sick enough to get them just yet.
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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.
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.”
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.
Infection prevention and control is so important after a lung transplant, but often I am left with more questions than answers about how to protect myself.
I believe my passion for science and math — and the unique perspective cystic fibrosis has given me — will help me make an impact as a pharmacist.
My lung transplant journey was long and, at times, full of uncertainty. Now that I have new lungs, I want to live my life to the fullest and honor my donor while I do.
Getting a double-lung transplant has been a life-changing journey. Along the way, I've had to deal with changes in my mental health and the struggle to keep my survivor guilt in check.
Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy.