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  1. Replies
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    I'm glad to hear that the sweat tests results...

    I'm glad to hear that the sweat tests results were negative! I know that doesn't resolve her symptoms, but I hope it gives you some peace.
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    i haven't heard of this before! thanks for...

    i haven't heard of this before! thanks for sharing it. I've heard of people using an ultrasonic jewelry cleaner to help unclog holder heads, but this new device is much cheaper. I try to at least...
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    activity, activity, activity. I'm so sorry you're...

    activity, activity, activity. I'm so sorry you're dealing with this diagnosis but catching it so early and at this stage in the drug development world your daughter was born in a good time. My...
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    I've also been coming to this conclusion lately....

    I've also been coming to this conclusion lately. maybe as a start you could add more cooked veggies into your meals in sneaky ways. for example: shredded/grated/chopped super fine carrots, zucchini,...
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    Hi tishen20, when i click the link it says...

    Hi tishen20, when i click the link it says "sorry, we couldn't find that page." can you fix the link and try posting again? Thanks!
  6. I'm currently in the other part of this study...

    I'm currently in the other part of this study (VX17-445-102) and doing SO well. I am very, very hopeful these triple combos will be what we've been waiting for!
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    I only took Indrepta B for about 1 month at the...

    I only took Indrepta B for about 1 month at the full dose and then had some hospitalizations and started a drug study so I stopped it. I do feel like it helped me cough up more junk and plan to...
  8. I've had low iron off an on for years. I was on...

    I've had low iron off an on for years. I was on iron supplements for years but stopped in highschool (I'm guessing my levels were fine then? don't totally remember). And then I had low iron again...
  9. edited: i totally didn't pay attention to the...

    edited: i totally didn't pay attention to the fact that you have the Invacare one and it's no longer made! oops!


    I have the Invacare Mobilair 50 psi compressor. I've had it for several years...
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    Hi masterykonedy, i've known a number of women...

    Hi masterykonedy, i've known a number of women with cf that have had successful pregnancies with cfrd. there is a large group of cf women on facebook that are pregnant or hope to be at some point....
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    I'm so sorry i didn't respond sooner. I'm about...

    I'm so sorry i didn't respond sooner. I'm about an hour and 15 minutes to the clinic in Boston without traffic. If i have an appointment before 10am i usually add about 45 minutes to an hour to my...
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    I live in NH and am seen at Mass General in...

    I live in NH and am seen at Mass General in Boston. Generally Very happy with the care! Boston children's is a great cf center as well and they see adults there as well as children.
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    I would definitely get him checked for gerd.

    I would definitely get him checked for gerd.
  14. i visited a friend in CO Springs a couple of...

    i visited a friend in CO Springs a couple of years ago (her hubby was stationed there for the army) and had some difficulty with the altitude. I wasn't terribly sick or anything but we went for some...
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    it's my understanding they only offer coupon...

    it's my understanding they only offer coupon codes if there was a lost shipment or something happened to your shipment during transit. They don't offer coupons normally. sorry for the bad news!
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    I grew up in chapel hill and went to UNC from age...

    I grew up in chapel hill and went to UNC from age 4-27. Had amazing care there. They have a really large cf and lung disease research program with some big names so I would imagine that attracts...
  17. Thread: Two Years Ago

    by jaimers
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    Thanks so much for sharing your reflections...

    Thanks so much for sharing your reflections Rubyrose! I'm so glad it's been beneficial for you! I'm one of the ones still waiting something that will help for my mutations but I wanted to say to you...
  18. Thread: CF and birds

    by jaimers
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    my mom is a vet and would never let us have...

    my mom is a vet and would never let us have birds. they can carry or get diseases that humans are able to contract from contact with the birds. I would talk to your doctor though and get their...
  19. Thread: Newborn

    by jaimers
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    Congrats on your new grandson! Here is a link...

    Congrats on your new grandson!
    Here is a link to more information about the newborn screening. It's hard to wait for the appointment, but they will be able to tell you the results right away once...
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    Yes I think so, slowly! I've spoken with a couple...

    Yes I think so, slowly! I've spoken with a couple other patients at the clinic that i'm friends with and one of them is on the patient advisory committee and no one else had heard this info about a...
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    I go to MGH and have been pleased with my care....

    I go to MGH and have been pleased with my care. Both Dr. Sicilian and Neuringer are wonderful. For the last 1.5 years the clinic has struggled administratively because the NP position was...
  22. Thread: IV protocol

    by jaimers
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    I've never heard that protocol before and neither...

    I've never heard that protocol before and neither center I've been to (UNC and now Mass General hospital) follows that protocol. It's always been 14 days whether in hospital or at home for me. I've...
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    Hopefully you'll be able to get some solid...

    Hopefully you'll be able to get some solid answers soon! Hsve the docs mentioned anything about CFTR related metabolic syndrome (Not full blown cf, but often can have similar symptoms) or primary...
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    Yeah I was getting up like, 3 or 4 times per dose...

    Yeah I was getting up like, 3 or 4 times per dose to go get something I forgot :rolleyes: so these really helped me!
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    The last time I did home IVs I made up several...

    The last time I did home IVs I made up several days worth of dosing kits--a ziplock with gloves, saline and heparin flushes, cap, alcohol swabs, etc. so when it was time to do a dose I could just...
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