Search results

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    Disability threatened

    a friend of mine shared an article with me about a girl who lost her disability are any of you having an issue with SSA trying to take your benefits too? Ive looked up the...
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    Can an adult have cystic fibrosis without knowing it already?

    I am 34, I was diagnosed when I was 23, it wasn't until I was diagnosed that I connected things I'd noticed but either didn't know it wasn't normal or it was blamed on something else so yes you can have CF and not know it
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    New Questionnaire for our APP development. . What do you think is Valuable?

    it was an app for this forum I downloaded it originally 4yrs ago
  4. L

    New Questionnaire for our APP development. . What do you think is Valuable?

    having it actually work would be a great start, I have downloaded it twice and it just never worked and from what I have read I am not the only one who had this problem
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    My youngest cousin has cystic fibrosis? Should I be concerned?

    I was diagnosed at 23, my lack of weight gain was attributed to my high metabolism and hyperactivity, I had no idea my skin was more salty, and the mucus they thought was bronchitis, honestly I wouldn't have been diagnosed if it wasn't for my scoliosis. When my doctor tested me for CF, I had a...
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    Will Mucinex help a CF cold?

    I was diagnosed 10 years ago, before I was diagnosed I took Mucinex all the time, one of the first things my doctors told me is don't take Mucinex it doesn't work for us, and don't use cough drops because my doctor wants me to cough. Not sure what your taking but I would suggest extra saline...
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    While I wasn't diagnosed until my 20's until recently I had always been underweight and was constantly teased and called anorexic, my good friends would stick up for me and talk about how much I ate at home, because lets face it even 15 years ago school lunches sucked. I can understand the...
  8. L

    Kalydeco and unwanted weight gain???

    If i dont feel like a snack i just drink whole milk
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    When did you decide to stop going to work?

    I'm not sure what your health insurance is like but from what you wrote and what I know I do not think you qualify for disability, I actually stopped working before I was diagnosed for a surgery and when we discovered the CF I just never went back, sad to say my health was so bad, 75 degree...
  10. L

    yes this is my mutation as well

    yes this is my mutation as well
  11. L

    What to expect with Kalydeco

    between Medicare and Medicaid I only have a $3 copay for my Kalydeco
  12. L

    Medicare- Is there ANY way to get HOME IVs covered?

    I know every state is different so I don't know if this will help but I am assuming you are on disability to be eligible for Medicare at 34, if that is the case you may be eligible for SSI, Here in NC I am on both SSDI and SSI, being on SSI qualified me for Medicaid which helps, though home...
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    unknown genotype

    I didn't want numbers or percentages so much as to know it's not really rare, its comforting to know that there are others who have an unknown genotype like me. on a side note the hospital has a 'floor' in the memorial wing, 6 bed tower that is unofficially the CF floor, I do believe it's...
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    unknown genotype

    I actually go to UNC for my CF treatment so I find that very interesting/amusing. I actually did look up the 2789+5g in the CFTR2 database I found out really only one thing my doctors didn't mention and that's that I'm not likely to be pancreatic insufficient, its the unknown I was curious...
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    taking Ivacaftor?

    on my consent paperwork has this on it, hopefully some part of this is helpful, I also have yet to be contacted so I may not have qualified, they ran some blood work to see if what they need to be ok, is ok, I have no better way to explain that one, lol I also don't know what all they were...
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    Medical Marijuana

    sorry to hear that, when the subject came up my doctor had no problem with me using marijuana provided I don't smoke it, is your doctor a resident or attending? if they are a resident I'm sure you know in a few years you get a new doctor, personally I went through 3 residents before I was...
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    unknown genotype

    I have been sorting through the records I have from clinic and hospitalizations and found a document that lists my genotype 2789+5g->a / unknown from what I recall my doctor told me that my mutation was from (discovered?) eastern NC which is interesting since I live in NC, but my inquiry is...
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    taking Ivacaftor?

    we discussed it at length before I was ever given any paperwork to sign, I am just waiting to see if I get approved, my lung function isn't getting any better and only really gets worse when I'm sick, but I have been stuck in the 30's for the last 9 years, I am hoping that I get approved...
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    taking Ivacaftor?

    If I read the paperwork I had to sign correctly this is supposed to be a trial, from what I recall they (the company) are trying to get the FDA to approve its use
  20. L

    taking Ivacaftor?

    I just saw my healthcare team and was told that I qualify for an experimental treatment protocol, apparently Ivacaftor now covers 23 mutations and I have one of those mutations. I am still waiting to see if I get accepted into the study, but I was wondering if anyone is/has taken Ivacaftor and...