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  1. R

    For people taking Orkambi

    I've been having killer tummy issues my second week into Orkambi. An just an FYI and sorry if it's TMI but after I started this medicine I ovulated for the first time in months. I know in my youth having CF I often treated birth control casually because I knew women with CF had trouble getting...
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    For people taking Orkambi

    I'm only on Day 5 of Orkambi, my FEV1 was 60% last check up 07/28. I plan to go in at the end of the month to see how it's improved. As far as offsetting the antacids, the antacids are less effective not the Orkambi. I separate them by 2 hours and have no issues.
  3. R

    For people taking Orkambi

    I didn't stop my antacid, I would be in tummy agony without it but I'm off setting when I take it by 2 hours from the Orkambi AM dose. I live in Texas so I don't know that I've ever noticed a time when I wasn't dripping in sweat after being outside, but I'm hoping I'll see a reduction in the...
  4. R

    For people taking Orkambi

    This is day 1 for me, I have to say- I'm both excited and scared. Is everyone who is experiencing GI issues making sure they are taking it with at least 20 grams of fat? Also it can make antacids less effective for a bit, the package recommends you start at 1 pill in the morning for a week if...
  5. R

    What do you take with you when admitted!

    I go buy a cheap twin size egg crate foam mattress topper ($12), makes a huge difference in those beds, my body pillow and my quilt, a case of coke, my Xbox and games, tablet, laptop, a notebook, nail polish, an external hard drive loaded with movies and TV shows, cables for hooking stuff up and...
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    Tricare Coverage for CF Dietician?

    I've had tricare prime for 13 years now, always been treated at an off post cf center, never needed an additional referral to see a dietician. They always come in as part of my CF appointment. Now, if you aren't going to a true CF center and they don't have a cf dietician on staff then I'm not...
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    Weight and BMI before feeding tube?

    Okay, so I am trying to find out from CF folks what was your BMI and weight prior to getting a feeding tube and did you gain weight after placement and if so how much? I've lost quite a bit of weight since my Celiacs diagnosis and I was concerned cause my BMI is 19.32 right now and I weight...
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    Insurance coverage through employer - how do you keep high useage from employer?

    I have Printer on ignore for this very reason. Not seeing hateful messages has made reading the forum much nicer :)
  9. R

    stomach aches

    Get checked for Celiacs. My docs upped my enzymes, upped my acid reflux meds (is he on anything for that?), tried everything and it didn't matter. Also, if he isn't on nexium or something for acid it can cause major issues. I thought my doc was crazy for suggesting it cause I thought, "I don't...
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    Medicare Part A & B & D and Texas questions....

    Thank you so much! This helps A LOT! It does get very confusing but I feel like I'm getting it now and I can research the drug plans to find the best one. :)
  11. R

    chronic pain

    Please Get Checked! Please get her checked for Celiac disease. It is so frequently missed, my CF docs missed it for a year and when you said your daughter just hurts all over that is EXACTLY what I felt like. It hurt to be touched, wearing clothes hurt, my whole body was like one big ache and...
  12. R

    Medicare Part A & B & D and Texas questions....

    Okay, so my husband is getting out of the Army, I have had Tricare for the last ten years and I know nothing of regular insurance....I have Medicare Part A and am Part B eligible. My questions are as follows: 1. Can someone tell me how Medicare Part B works in terms of seeing CF docs? I will be...
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    CF and Children

    I have two sons, ages 10 and 4 and two stepsons ages 11 and 10. With four boys I am on the go nonstop. I remember when I had my first son I felt guilty just holding him because I loved him so much and I was so afraid having a mother with CF would just hurt him and like i'd never be good enough...
  14. R

    Pyoderma in Pets

    Try switching to a gluten-free (grain free) pet food. My Yorkie had skin issues and nothing else fixed it but that and my cat had patchy hair loss and the food fixed it and I have a friend with a rott that had the same deal. Its common in purebred animals. My two mutts eat everything with my...
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    chronic pain

    Get checked for Celiacs- everyone. I know i'm like a broken record on this forum but seriously. I was in agony before my diagnosis and afterwards and going gluten free- it was just incredible. I can handle so much crap with CF but put a few bread crumbs near my dinner plate and I will freak out...
  16. R

    aching joints (feet, hands, hips), fatigue, and headaches???

    I had all these symptoms, my headaches got so bad migraines meds wouldn't work and my body hurt so bad I couldn't walk upstairs or pick up my infant son. I had an upper endoscopy done and the GI confirmed celiac disease. It affects the same genetic population and the vitamin deficiencies are the...
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    F508 & I148T and behavioral issues?

    Celiac disease affects the same genetic population as CF and can cause all the issues you are discussing. When I got diagnosed I was having major mood swings, thyroid was messed up, I had migraines, joint aches, depression, fits of rage. Then after endoscopy and going gluten free- I got my life...
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    Rheumatoid Arthritis

    Celiac When I had wicked joint pain they thought it was CF related arthritis and then I got an upper endoscopy and they figured out it was Celiacs. I would get checked just in case. After I went GF my joint pain practically went away, it just crops up when I'm sick or if I'm on IVS I seem to...
  19. R

    41 years old, unknown GI issues

    Have you had an upper endoscopy to check for Celiac disease? It is frequently missed and sometimes a blood test will show it but not until the damage becomes so severe that your body develops antibodies to gluten. I have CF but I never experienced the level of GI issues I had prior to my diagnosis.
  20. R

    I probably need enzymes for medical brownies?

    Lol every time I see a pot related post I know it must be Enzo! Anyway, giggles aside- when I was a young pup my enzyme use was not consistent and I got by with that but over time that changed. I have no advice for the pot content of your brownies, don't know anything about pot actually- I...