The trio talks about the times they've experienced guilt in dealing with CF. Guilt comes in many ways, and as Gunnar says, isn't generally recognized until after the fact. He thinks guilt masks itself as frustration or anger. Guilt seeps into their lives mostly when they are sick and they feel like people are making unusual accommodations. Lea mentions that guilt is one of her most difficult challenges to deal with. She talks about having a hard time articulating her guilt to her support system and struggles with accepting helping. Tiffany talks about the days before her transplant when she was entirely reliant on her parents to survive. How does guilt impact your life with CF?
"Buy or Sell" is back by popular demand! The rules of the game are simple, each host has to buy or sell a CF topic. If they "buys" it, that means they support the topic or technique. Conversely a "sell" rating means they disagree. The trio discusses CF topics from CF tattoos, to sterilization techniques, vaccines, sinus rinses, sharing medical info on social media, home PFT machines, E-Flows, clinical trial participation, disclosing CF to an employer or recruiter and more!
Breathe In is back after a brief end of summer hiatus! Lea finds herself on IV's to start up September, so the trio talks about some of their experiences with home IV's. Home IV's can seem complex and overwhelming especially for patients and families who haven't yet developed a routine for recurring pulmonary exacerbations. Gunnar and the girls talk about the importance of finding a home care nurse that's easy to work with, remaining vigilant for medical mistakes - from expired medications to allergies - and, above all else, following a path to better health. The trio also talks about some of the tips and tricks they've learned along the way, like mixing self-pumping Eclipse Balls themselves and bringing their own supplies from home to the hospital for the PICC line placement team.
The trio talks about the times they’ve experienced guilt in dealing with CF. Guilt comes in many ways, and as Gunnar says, isn’t generally recognized until after the fact. He thinks guilt masks itself as frustration or anger. Guilt seeps into their lives mostly when they are sick and they feel like people are making
Amy’s next installment in her Drug Development Wednesday column aims to provide some context to the current drug pricing debate. Why do medications seem to cost so much? Where does that price come from? What are patients actually liable to pay? Are the profit margins for biotechs really that much different than other industries? The
Lots of important information to start off your week, so pay attention! My Visit to CFF Believe it or not, prior to last Friday I had only ever been to a Cystic Fibrosis Foundation event once or twice in my life – a golf outing hosted by a family friend. It makes sense, we sort
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