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    nasal polyps and deviated septum

    While I can't speak to the reoccurrence of polyps, I did have sinus surgery for polyps and a deviated septum two and a half years ago. It was probably one of the toughest recoveries I've ever had, simply because everything felt worse before it felt better. I couldn't breathe through my nose at...
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    anxiety about hemoptysis

    I suffered from sever episodes of hemoptysis from the time I was 14 until I was 18, when I finally had the highly diseased love removed. They occurred every 3 months, and as a result, I have sever panic attacks when I taste blood. However, when I'm not in the middle of an attack, I am able to...
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    zythromax long term?

    I have taken 500mg zythromax M, W, F for many, many years. I started with a smaller dose, I think 250mg (this dose occurred before I started dealing with meds on my own, so I'm not 100% sure), but the dosing schedule of three days a week has always been the same.
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    Depression & anxiety (a new way to cope)

    Depression & anxiety (a new way to cope) I also love to knit, Treasure. The repetitive action is so calming and really helps me control my anxiety and OCD. I've started using hospital stays to knit family members blankets.
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    body image

    I agree with Twist regarding doctors' BMI hopes. I'm 5'6", and I weigh between 126 and 128. For the best BMI, I should weigh 135. I've been at that weight, and I felt uncomfortable. Not just with how I looked, but I didn't feel like myself. I told the doctors I would do everything I could to...
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    terrible adhesive allergy, possible iodine allergy connection?

    I don't have a reaction to the tegaderm, aside from some irritation after a couple weeks, but I do have awful reactions to other components of my port dressing. They used to use something called a biopatch around the port needles, and they used them around my PICC when I had one of those. I had...
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    My parents sometimes had me go in person to place a prescription refill. I still use the same pharmacy for a lot of my meds, and some of the same pharmacists still work there. Having that long, personal relationship has been fantastic when it comes to my meds.
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    Husband in the hospital for the first time at age 30.

    My first hospital stay happened when I was 14, about to turn 15. From then on, for four years, I was in the hospital every 3 months. One love of my lung was just extremely infected, and I'd end up coughing up large amounts of blood. After I had that love removed, my hospital stays became more...
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    Depression CF related

    I've dealt with depression and anxiety for several years now. I take 15mg of remeron and see a therapist to also help. I say the remeron puts my thoughts in order so I can work through them in therapy. I still have ups and downs, but I'm better able to recognize and work through my down periods...
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    Just one day off

    My parents always told me, "Your best day will be someone's worst day, and your worst day will be someone's best day." I still repeat that to myself. There's nothing wrong with having a pity party for a day, but we can't be consumed by it. (P.S. My family always would take one day off, except...
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    Orkambi Journey with 19 y/o Allan Diagnosed at 4 months

    I just want to add a little note about your son's social life. It sounds like he's an introvert to me. I notice this because I'm also an introvert, and leaving the house can be difficult for me. Being around people drains me of energy and it can take me days to recover. I got back on Saturday...
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    Orkambi and fat

    Thank you for this. When I spoke with someone at Vertex, all I was told was "A glass of whole milk is fine." Actually having a more solid number is extremely helpful. It will probably be easier to plan my next week's meals knowing if I don't hit 8g or more of fat, I'll still be okay.
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    Orkambi Journey with 19 y/o Allan Diagnosed at 4 months

    One quick note: for those using Carnation to up fat content: check the nutrition label. I thought using some carnation would be a genius way to get more fat, but when I checked my mix, it said it only contained .5g of fat per serving. I use the rich milk chocolate flavor. Granted, a 8oz glass of...
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    "Normal" for CF kids

    "Normal" for CF kids I nanny two boys and they've been around me and my CF for their entire lives. They're very educated on the lungs and everything CF related. On one of our weekly trips to story time at the library when the oldest was about to turn 4, the woman leading the story...
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    other inhaled antibiotics?

    I'm also doing inhaled Vanco. It's a little difficult for me, since I have an allergy to it, but it seems to help my MRSA control. I just have to do extra albuterol with it.
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    I see a therapist in addition to taking an antidepressant. I know some people don't really want to go the med route, as there is a fear of becoming "numb" or feeling something like an addiction to them. For me, however, I use them so I am able to sort through my problems in therapy. Before...
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    How do you avoid the pity party when you tell people you have CF?

    I take a very different approach than previous posters. I never have tried to hide my illness, and I'm very upfront about it. I might vary in how detailed I get, but I don't try to hide CF. when I can see people start to pity me, I just tell them not to. My life does not deserve pity. Sympathy...
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    Ongoing War: Iced Coffee vs. Enzymes

    I am a major coffee drinker. Like you, I translate calories into enzymes. I take half before and half after. But I'm a fast drinker. I pretty much chug my coffee. You could also see if your clinic is okay with you upping one enzyme at a time to see what dosage will work.
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    What I wish my teachers/ school counselor knew about CF

    I agree with Oboe. My biggest issue was always the amount of school I missed. My specialized plan gave me four days to completed missed work for every day I was absent, so it wasn't really a time issue. It was that I missed many classes and the accompanying lectures and lessons. We finally got...
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    How long til IV antibiotics take effect? /o2 dependency

    Several years ago, I'd notice the effects of IV antibiotics within a few days and I'd end up spending two weeks or less hospitalized. Now, my hospital stays are three weeks, and I don't start feeling effects until at least a week and a half in, unfortunately. However, I do think it's smart to...