Breathe In kicks off Season 2 with an episode dedicated to world travel. Lea just returned home a trip to Europe, while Gunnar is coming off a month and half worth of business trips. The trio recognizes that traveling with CF can be a stress point, especially because of packing and repacking medications before and during a trip. Lea and Tiffany say they organize their medications by each day when they pack. Gunnar, on the other hand, organizes his medications into their delivery methods - oral vs. inhaled. The group also talks about the importance of being transparent with airlines, airport workers and security agents. Finally, Tiffany (of course) brings Taylor Swift into the conversation, but Gunnar and Lea talk about their displeasure with her last album.
Cystic fibrosis is a brutal, unrelenting illness, but there is a lighter side to the disease. Like anything in life, simple mistakes or seemingly very serious experiences can also be funny. Gunnar, Lea and Tiffany tell of a few times when cystic fibrosis led to uncontrollable laughter, from recovery room stories, to the "smelly side" of CF, uncomfortable conversations and a number of awkward moments. The trio also agrees that humor is an effective coping mechanism and hopes that others are able to look back on some very serious moments and laugh!
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?
Amy is back with part two of her discussion concerning access for CFTR Modulators. Today we take a look at what’s preventing people with CF from gaining access to Orkambi in the United Kingdom I’m a DF508 heterozygote and therefore don’t have a CFTR modulator that will work for me (hopefully late 2019 it will
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Standby for a poop blog! Yesterday I was at clinic for a routine visit, and part of that visit included a sonogram. Actually… believe it or not, October is Medical Ultrasound Awareness Month. Did you know that? I didn’t. Anywhoooo…I decided to make light of that part of my trip and play a little game.
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Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just so
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