One of the benefits of having cystic fibrosis (if there was ever such a thing…) is that it is quite easy for our clinics to report, collect and analyze patient data all over the world. The Cystic Fibrosis Patient Registry (despite some of my issues with it) has the ability to quickly collect data allowing...
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I write with good news! Our pleas have been heard and some of the discriminatory policies or proposed policies that explicitly list cystic fibrosis in triage guidance are being challenged or have been reviewed. I have updates from Wisconsin, Vermont and finally a national position from Cystic Fibrosis Foundation. It is CRITICAL we continue to...
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Darcy is back on the blog! Fertility treatments are one of those elective procedures that have been canceled because of the pandemic. It makes sense, of course, but it’s one of those crazy domino effects of the virus. It’s weird to think that there will be different children born at different times because COVID19. I’m...
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Are we living in a world that is not adequately valuing our lives? We might be. Within the context of triaging care, our society is discovering that some of the very worst policies imaginable are still on the books. “Policies and guidelines in five states — Alaska, Florida, Oklahoma, Vermont and Wisconsin — specify that...
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We are infection control experts. Don’t miss your opportunity to take a leadership position in your community as people start to adjust to the new normal. Yesterday I listened to Dr. Antony Fauci – the man who is proving to be our national hero when we need one – in an interview on the Wall...
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Today is my one-month anniversary for being in self-isolation. Some days I wake up feeling like that time has flown by. Other days it feels like this past month has been the longest decade of my life. At the heart of the month I have been in isolation is my routine, the daily cystic fibrosis...
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Medical security is one of the most fundamental rights offered to patients and the medical system. Patient privacy is why I often omit or generalize different medical details about my own life within these blogs. I don’t write about PFT scores, test results and things like that. It’s also why I never tried to track...
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