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  • carolinen's Avatar
    Today, 02:28 PM
    carolinen replied to a thread Newly Cultured NTM/MAC in Adults
    So sorry you have had this diagnosis - but at least you now know why you feel so bad, and can start making a plan with your doctors to treat it....
    2 replies | 413 view(s)
  • jcwise62's Avatar
    Today, 02:19 PM
    jcwise62 replied to a thread Sauna and CF in Adults
    My son, a senior in HS this year and varsity football player, takes a salt tablet every day before he heads off for practice and one at night before...
    5 replies | 477 view(s)
  • Bwiles's Avatar
    Today, 01:44 PM
    Bwiles replied to a thread feeding tubes in Nutrition
    Hi Jillybeans, My 23 y/o daughter just got a feeding tube. Like others, we fought the idea of doing this for several years. She is now looking at...
    2 replies | 91 view(s)
  • tharris's Avatar
    Today, 01:27 PM
    tharris replied to a thread feeding tubes in Nutrition
    Hello jillybeans. I feel your devastation. My son, (20 years old 6' tall - 145 pounds) also 'off the charts' (in the wrong direction). We fought...
    2 replies | 91 view(s)
  • Ratatosk's Avatar
    Today, 01:26 PM
    I agree. I used the talking points from the CFF letter, added individual info and tada, two faxes sent. Especially easy to use the voice to text...
    4 replies | 302 view(s)
  • Ratatosk's Avatar
    Today, 01:22 PM
    Ratatosk replied to a thread Sauna and CF in Adults
    With DS, his doctor was never concerned with salt intake as long as he also had plenty to drink. His daycare kept the kids very active -- they...
    5 replies | 477 view(s)
  • triples15's Avatar
    Today, 09:58 AM
    Holy cow Ratatosk, that.was.awesome!!! Thanks so much for posting it. Within a couple minutes they had faxed my letter to both of my...
    4 replies | 302 view(s)
  • stylecomfy's Avatar
    Today, 09:09 AM
    stylecomfy replied to a thread Sauna and CF in Adults
    Thanks for the input. I was wondering about a more exact guideline for salt replacement in CF? What do your clinics commonly tell you? I've generally...
    5 replies | 477 view(s)
  • Ratatosk's Avatar
    Yesterday, 11:04 AM
    Friends, text RESIST to 50409 to send a letter to your representatives. This is a free and legitimate service that will send a letter to your...
    4 replies | 302 view(s)
  • jillybeans's Avatar
    Yesterday, 06:03 AM
    jillybeans started a thread feeding tubes in Nutrition
    What experience does anyone have with feeding tubes? My 15 year old newly diagnosed son cannot gain weight despite all of our best efforts. The...
    2 replies | 91 view(s)
  • veggiebin's Avatar
    09-20-2017, 10:41 AM
    veggiebin replied to a thread Don't have allergies? in Adults
    This thread is over ten years old, but I find it very interesting. I would like some updated information from people. My 19 yo daughter has...
    51 replies | 1197 view(s)
  • rebecca02's Avatar
    09-20-2017, 12:36 AM
    Coconut oil is much more like the holy grail. It repairs hair damage and breakage, helps to prevent hair fall and helps hair growing. Thanks to its...
    50 replies | 9062 view(s)
  • Ratatosk's Avatar
    09-19-2017, 04:12 PM
    Ratatosk replied to a thread Sauna and CF in Adults
    Definitely sounds like dehydration. I know some athletes take Salt Tablets --- I order the Salt Stick brand for my husband & cousin (No CF) during...
    5 replies | 477 view(s)
  • Golubicc's Avatar
    09-19-2017, 03:16 PM
    Golubicc replied to a thread Sauna and CF in Adults
    I would think with headache you are definitely dehydrated. Be careful.
    5 replies | 477 view(s)
  • stylecomfy's Avatar
    09-19-2017, 12:31 PM
    stylecomfy started a thread Sauna and CF in Adults
    Hi all, anyone with Sauna-ing experience? I recently started looking into Saunas for overall health benefits, such as improved circulation,...
    5 replies | 477 view(s)
  • Ratatosk's Avatar
    09-19-2017, 11:02 AM
    Got the following phone script to use from our CFF Rep. Graham-Cassidy Bill Phone Script Call (202)517-8215 Hello, my name is and I...
    4 replies | 302 view(s)
  • Rebjane's Avatar
    09-19-2017, 05:47 AM
    https://www.cff.org/About-Us/Media-Center/Press-Releases/Sixteen-Patient-and-Provider-Groups-Oppose-Graham-Cassidy-Bill/?linkId=42392696
    4 replies | 302 view(s)
  • primarymedical's Avatar
    09-18-2017, 12:36 AM
    Primary Medical Group provides medical house calls in Las Vegas for homebound patients. Our house call doctors are experienced in urgent, acute,...
  • mom2two's Avatar
    09-17-2017, 08:19 AM
    I know that my youngest child, at 22 months, was begging us to go to preschool from 9-noon. She'd watched her older sister go to school, been there...
    15 replies | 5191 view(s)
  • delsonno9's Avatar
    09-15-2017, 09:50 PM
    My daughter started fitness/ bikini competition this year in May The Europa in Orlando, Fl was her first. Prior to that she did nine years of Travel...
    9 replies | 2844 view(s)
  • CFSanDiego's Avatar
    09-15-2017, 02:22 PM
    CFSanDiego replied to a thread CF and Lyme Disease in Adults
    Hi. My daughter (10) is being treated currently and she has cf as well. You can email me at [email protected] if you wish.
    1 replies | 697 view(s)
  • DNelson88's Avatar
    09-14-2017, 04:41 PM
    DNelson88 started a thread CF and Lyme Disease in Adults
    Hi all. My adult son (age 29) was just diagnosed with Lyme disease. He is having trouble tolerating the doxycycline. Anyone else with CF have/had...
    1 replies | 697 view(s)
  • Printer's Avatar
    09-13-2017, 10:03 AM
    The sweat test that is given outside of a CF Center is only a "scanning sweat test". That is the reason that you were told that your CF Center will...
    2 replies | 543 view(s)
  • kyeev's Avatar
    09-13-2017, 09:22 AM
    kyeev replied to a thread Knowing when it's time? in Transplants
    Oh I see. Well hopefully you will be listed next month. No, I haven't had my MHC antigens looked at yet. Still at the stage of getting all my CT...
    5 replies | 1386 view(s)
  • Lynnfield mom's Avatar
    09-13-2017, 08:05 AM
    Lynnfield mom replied to a thread My Alex in Remembering
    Heather, I cannot imagine your grief. I am so sorry for your loss. About Alex's meds...the only thing that needs really special attention is...
    3 replies | 701 view(s)
  • mom2two's Avatar
    09-13-2017, 07:35 AM
    Kyeev, I am not listed, yet. You have to do a month of rehab at Duke and educational classes. Since the initial testing I did was more than a year...
    5 replies | 1386 view(s)
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