Search results

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    Adults with CF what are your jobs?

    I'm a video producer / motion graphics animator. As I get older I'm realizing travel and "working in the field" are taking more out of me, so a few years ago I began heavily investing in learning motion graphics animation as that's something I can do from home. Were I to recommend a field it...
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    Moving to Nashville (from New Zealand)- reaching out for contacts and advice

    I'm a Nashville citizen, also DDF508, 33 years old. I grew up in East TN driving the 2 hours to Vanderbilt Pediatric from the age of 5, then transitioned to the adult CF clinic. I moved to California for about 7 years in my 20's and experience FAR inferior healthcare that really made me...
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    Orkambi is approved!

    Question here from a ΔΔF508.... I've read a ton of articles on Orkambi and how excited everybody is about it, how it "Helps correct the gene" etc. but I still can't figure out exactly what it will DO for my body. Not the technical answer, but what it will do for my body as a result of using the...
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    How's the healthcare and coverage in Colorado?

    Thanks Jaimers! I called the local clinic but still haven't been able to reach anyone. I did speak to the local CF chapter and they had some good advice. The reason I posted here is that I want some information on the healthcare COVERAGE and Insurance (state insurance, etc.). I've heard left...
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    How's the healthcare and coverage in Colorado?

    Hello everybody! I've made the decision that (pending job opportunities) I'm shooting to move to Colorado around June of this year. I want to go ahead and get started on the process of researching/taking the steps towards coverage (insurance, etc.), and I have no idea where to even start...
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    Share your tips to improve day-to-day life!

    Hey everybody! I'd like to start a running list of handy tips for a better life and health management! I was thinking of a few things I've discovered on my own that have helped me with my CF, time management with treatments, happiness, nutrition etc. and I'd love to compile the list and send...
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    Making yourself available for international research?

    My girlfriend and I are trying to take a trip to Thailand next Spring, and I've heard that CF is incredibly rare in Asia and sometimes university hospitals pay for some travel expenses in exchange for allowing their students to run medical tests etc. for educational purposes. I have no idea...
  8. L

    Seriously Check your meds

    My pharmacy once sent me some HIV medication instead of my Azithromycin... It was a simple mix-up at the pharmacy but it was strange
  9. L

    An Overstock of Extra Enzymes

    Thanks for the GREAT responses everyone. I've been out of town on a business trip and will be back later this week and able to give more focus to these responses, but thanks again for all the info!
  10. L

    An Overstock of Extra Enzymes

    That's exactly how I feel! I suppose I'll speak with my doctors and see if they know anyone in need.
  11. L

    An Overstock of Extra Enzymes

    Hey everybody! I don't know if this is even doable or kosher (maybe there are legalities?) but I've been organizing all my meds and I have a MASSIVE back stock of Creon 24000 and Pertzy 16000. Some of it may be expiring (I've never noticed any difference with expired enzymes) soon. Anyway I...
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    Cayston Intolerance??

    My doctors put me on Cayston (three times a day one month on one month off) and the first few days of starting the monthly treatment I would get INCREDIBLY sick. Same symptoms as the flu for about 2 days. Then it would wear off and everything would be fine until two months later when I started...
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    Dealing with Smoke and Fires

    Thanks Bookworm, I really appreciate it! I did a bunch of research and decided to order one. This is my first purifier ever, so I'm really excited.
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    JUST BREATHE: Portraits, 3 Days Left

    What a beautiful project, this is the first I've heard about it! If you decide to do portraits on the west coast let me know :-D Also my brother lives in Tennessee and has CF as well if you want to add him!
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    Dealing with Smoke and Fires

    I live in Northern California where fires are not uncommon. As I'm sure you've heard we are having some pretty severe fires in the area at the moment and one of the side effects that nobody talks about is the SMOKE. I can tell if there's a fire in town/nearby the instant I wake up just by the...
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    Cystic Fibrosis, Relationships and Wanting Children

    Thank you all so much for your encouragements, kind words and identifying affirmation. As a quick update, my incredible lady and I had some very difficult discussions about the realities of my situation but are still growing together and having faith. I'm scheduled to get a sperm test next...
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    Cystic Fibrosis, Relationships and Wanting Children

    I'm curious about those with CF and their desire for children. I'm dating the most amazing woman I've ever met, and she has been a better support for me and my health than I honestly knew how to imagine a significant other could be. She wants children more than anyone I've ever met, and...
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    Inspiring Cystic Fibrosis Documentary!!!

    Great idea Beau. This is what I do as my profession. If you need help with the post production (or just want me to take that background hiss out of your promo video) let me know how I can help.
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    Woke up with constant chest pain. Any thoughts on what this could be?

    So I just got a voicemail from my doctor (somehow I missed the call :-/) and they suggested that it is probably a mucus plug... but I feel that... while it's possible and I'll act accordingly (doing therapy more and drinking more fluids/exercising more won't hurt at all!) I feel like that's...
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    Woke up with constant chest pain. Any thoughts on what this could be?

    I've never had anything like this before, and it's very strange... I've got a call into my doctor and hope to hear back tomorrow, but in the meantime I figured I'd ask this.... I woke up about 4am wide awake with excruciating chest pain. It didn't feel like it was in my lungs, it's right below...