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Type: Posts; User: LunaFaith

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  1. Replies
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    Disability threatened

    a friend of mine shared an article with me about a girl who lost her disability
    ...
  2. Poll: I am 34, I was diagnosed when I was 23, it wasn't...

    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...
  3. it was an app for this forum I downloaded it...

    it was an app for this forum I downloaded it originally 4yrs ago
  4. having it actually work would be a great start, I...

    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
  5. I was diagnosed at 23, my lack of weight gain was...

    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...
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    I was diagnosed 10 years ago, before I was...

    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...
  7. While I wasn't diagnosed until my 20's until...

    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...
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    If i dont feel like a snack i just drink whole...

    If i dont feel like a snack i just drink whole milk
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    I'm not sure what your health insurance is like...

    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...
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    between Medicare and Medicaid I only have a $3...

    between Medicare and Medicaid I only have a $3 copay for my Kalydeco
  11. I know every state is different so I don't know...

    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...
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    I didn't want numbers or percentages so much as...

    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...
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    I actually go to UNC for my CF treatment so I...

    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...
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    on my consent paperwork has this on it, hopefully...

    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...
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    sorry to hear that, when the subject came up my...

    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...
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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...
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    we discussed it at length before I was ever given...

    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...
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    If I read the paperwork I had to sign correctly...

    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
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    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...
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    My first symptom would be my salty sweat and my...

    My first symptom would be my salty sweat and my lack of weight gain. Unfortunately for me those things were classified as something else, my lack of weight gain was attributed to my ADHD, at the...
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    Technically speaking yes pulmonary is my primary,...

    Technically speaking yes pulmonary is my primary, but for the purposes of book keeping my medicaid card lists a primary that I actually only see once a year for my PAP's
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    I average 2 PICC's a year the only problem I've...

    I average 2 PICC's a year the only problem I've encountered is I can't do the bedside PICC team, also I just had a Stent put in 7 months ago, apparently I had some blockage in my vein from the...
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    im not sure if your clinic is tied to a hospital,...

    im not sure if your clinic is tied to a hospital, but mine is, and when I am concerned I call the hospital switch board and ask for the Pulmnologist on call, you have to wait a bit for them to call...
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    I've been living with my lung function in the...

    I've been living with my lung function in the 30's for the last 9 years, ever since I was diagnosed and while I have periods when I feel like that I've adjusted, no cystic patient leads a 'normal'...
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    Just a guess on my part, but since the enzymes...

    Just a guess on my part, but since the enzymes are proscribed I'm pretty sure it's not legal. On the other side I know several people who are willing to help if they have back stock and know someone...
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