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Type: Posts; User: kosdancer

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  1. Woah. Maybe I've been lucky, but my original vest...

    Woah. Maybe I've been lucky, but my original vest just turned 18 and is still kicking. I don't use it much - it's at my parents' - but I've never had any issues. It was used heavily for 11 years. My...
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    I'm so sorry to hear that! I know it's terrifying...

    I'm so sorry to hear that! I know it's terrifying to lose so much so quickly.

    Some ideas...
    I assume you already had/have had IV antibiotics and either are still on them or have stopped them for...
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    I'm a PhD student in biochemistry with the aim of...

    I'm a PhD student in biochemistry with the aim of working in an industry job after. My main concerns when picking a career path were that it wasn't physically demanding and that it will have steady...
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    Hello, It sounds like you have been through...

    Hello,

    It sounds like you have been through quite a lot in a very short period! I'm sorry your daughter has had such a rough start.

    You aren't crazy - some of the symptoms you describe (salty...
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    Ethan, Symdeko has definitely helped with chest...

    Ethan, Symdeko has definitely helped with chest tightness for me, and I think it's helped with exercise tolerance as well. I switched from Orkambi about 2 months ago but also had a head start because...
  6. Mama K, It does seem like that second mutation...

    Mama K,
    It does seem like that second mutation is super rare, I also couldn't find it in any databases so I hope that UK CF trust is able to answer you. But I wanted to address the second part of...
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    I know how you feel! I've been on Orkambi and...

    I know how you feel! I've been on Orkambi and tez/iva, so not exactly the same situation, but I too have no need to gain any weight. I just eat it with breakfast and dinner and don't stress too much...
  8. Nope it's Vertex! This link has most of the...

    Nope it's Vertex! This link has most of the relevant information: http://investors.vrtx.com/releasedetail.cfm?ReleaseID=1033559 as far as how they're doing in patients, and then if you dig around...
  9. We can't quantify it exactly. In cells, it...

    We can't quantify it exactly. In cells, it restored about 20-30% of protein function. It's thought that we need at least 30-40% function restored to really see a big difference, so Orkambi is kind of...
  10. It's two different mutations. He is heterozygous...

    It's two different mutations. He is heterozygous for R117H, and homozygous for a different mutation - the 7t variant. Both are CFTR mutations, and since he's homozygous for the 7t variant, he could...
  11. LittleLab - Tegaderm can certainly cause a mild...

    LittleLab - Tegaderm can certainly cause a mild rash (and does, for me, within a few hours) but what beccasmama is describing really sounds like a classic chloraprep rash. I've seen many patients...
  12. beccasmama yes I have been dealing with this for...

    beccasmama yes I have been dealing with this for 5-6 years now so I have done a lot of research! Yes, it is very commonly used in surgeries so make sure to always mention it. When I had surgery last...
  13. As others have said, this sounds like a classic...

    As others have said, this sounds like a classic chloraprep allergy. Use betadyne and don't use bio patches as others have said but it's because they have chloraprep embedded in them. The only...
  14. Yes, I was always around 95-100 FEV1 and about 18...

    Yes, I was always around 95-100 FEV1 and about 18 months ago tried the new TOBI podhaler for a few weeks and it tanked my lung function down to 75. I've barely recovered from that, I've been sitting...
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    This is the description for POTS: "POTS can cause...

    This is the description for POTS: "POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more."...
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    I think CF is worth looking into but I'm not sold...

    I think CF is worth looking into but I'm not sold that it's definitely the answer either. Have you been tested for POTS? Your issues with getting fatigued showering and your heart rate when standing...
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    As far as the doctors that are reluctant to...

    As far as the doctors that are reluctant to prescribe it - I went to clinic yesterday and my doctor said this drug has been very polarizing. Some doctors are very excited and think this should be an...
  18. Thread: Teeth enamel

    by kosdancer
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    This is pretty common with strong antibiotic use....

    This is pretty common with strong antibiotic use. Are these the permanent teeth? If they are baby teeth the dentist probably won't do anything. For my permanent teeth with staining we did bonding. It...
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    Emory did a study that found that taking 50,000...

    Emory did a study that found that taking 50,000 IU every other week is beneficial so that is what I do. This is the brand I use - https://www.vitd3.com - I get it for free from Emory but it's not too...
  20. Thread: E coli

    by kosdancer
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    I can answer to the E. coli - I would agree with...

    I can answer to the E. coli - I would agree with your doc that it is likely caused by the reflux. E. coli is a bug that lives in all of our guts and it's pretty harmless (it's harmless enough that I...
  21. First of all, any exercise is going to have some...

    First of all, any exercise is going to have some benefit!
    That being said I do think some forms are better than others. If running hurts your knees and you are sure that you have good shoes and good...
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    I don't think I can even address all of the...

    I don't think I can even address all of the scientific misunderstandings here, but just a few:
    Wallach did not induce cf in animals using selenium.
    The way that scientists create CF in lab animals...
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    Hi! I had sinus polyps as a child for years and...

    Hi! I had sinus polyps as a child for years and had probably 30 sinus surgeries. Eventually, I did outgrow them - I haven't had a sinus surgery in 5 years for polyps. That being said, I am scheduled...
  24. I have two plastic sets of drawers from Target...

    I have two plastic sets of drawers from Target that I use - they do a really good job of holding everything. I also have a few drawer separators in there to keep things organized. It's worked very...
  25. That's probably worth doing; I did tobramycin...

    That's probably worth doing; I did tobramycin rinses for years. However, my ENT just told me that research has shown tat the most effective treatment is saline nasal rinses.
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