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Type: Posts; User: RobinB29

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  1. Replies
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    I've been having killer tummy issues my second...

    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...
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    I'm only on Day 5 of Orkambi, my FEV1 was 60%...

    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...
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    I didn't stop my antacid, I would be in tummy...

    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...
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    This is day 1 for me, I have to say- I'm both...

    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...
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    I go buy a cheap twin size egg crate foam...

    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,...
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    I've had tricare prime for 13 years now, always...

    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,...
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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...
  8. I have Printer on ignore for this very reason....

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

    by RobinB29
    Replies
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    11,768

    Get checked for Celiacs. My docs upped my...

    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...
  10. 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. Thread: chronic pain

    by RobinB29
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    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...
  12. 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...
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    I have two sons, ages 10 and 4 and two stepsons...

    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...
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    Try switching to a gluten-free (grain free) pet...

    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...
  15. Thread: chronic pain

    by RobinB29
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    5,409

    Get checked for Celiacs- everyone. I know i'm...

    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...
  16. I had all these symptoms, my headaches got so bad...

    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...
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    Celiac disease affects the same genetic...

    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,...
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    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...
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    Have you had an upper endoscopy to check for...

    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...
  20. Lol every time I see a pot related post I know ...

    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...
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    Get checked for Celiac disease. Yes, its easy to...

    Get checked for Celiac disease. Yes, its easy to say its not an allergy thing cause you've never been allergic to anything but the symptoms you are describing are Celiac disease and it is an...
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    I once drank a gallon of golightly and nothing...

    I once drank a gallon of golightly and nothing happened. Anyone else ever wonder what sick SOB named it that anyway? For me its usually more like go-violently....
  23. I moved from Texas to Ohio but now i'm prepping...

    I moved from Texas to Ohio but now i'm prepping to move back, my husband is military so we go where they send us and health insurance is Tricare and they pay 100% without issue so I really know...
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    My cat is the hunter of swab caps, those little...

    My cat is the hunter of swab caps, those little caps with the tiny sponges of alcohol in them I put on the end of my access after IVs. Not all hospitals or home health care companies use them but I...
  25. I was seen in Texas at Dell by Dr. Fuller. He was...

    I was seen in Texas at Dell by Dr. Fuller. He was very competent. When I would be admitted to Seton the nurses and staff were very good, they will bring you a fridge and a microwave and a stationary...
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