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  • Ratatosk's Avatar
    Today, 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...
    2 replies | 213 view(s)
  • jillybeans's Avatar
    Today, 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...
    0 replies | 14 view(s)
  •'s Avatar
    Today, 04:44 AM
    تاور کرین پتن
  • veggiebin's Avatar
    Yesterday, 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 | 1123 view(s)
  • rebecca02's Avatar
    Yesterday, 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 | 9027 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...
    2 replies | 361 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.
    2 replies | 361 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,...
    2 replies | 361 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...
    2 replies | 213 view(s)
  • Rebjane's Avatar
    09-19-2017, 05:47 AM
    2 replies | 213 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 | 5011 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 | 2833 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 | 685 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 | 685 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 | 509 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 | 1362 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 | 685 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 | 1362 view(s)
  • Golubicc's Avatar
    09-12-2017, 07:54 PM
    Golubicc replied to a thread My Alex in Remembering
    Deepest condolences on your loss. People in the hurricane areas are collecting CF supplies and medications. Maybe contact a cf center in Houston and...
    3 replies | 685 view(s)
  • treasuregoddess's Avatar
    09-12-2017, 05:59 PM
    fel - my son developed it around 15 years old. We really didn't use a lot of steroids until then, so not sure if it was caused by the steroid use or...
    7 replies | 1486 view(s)
  • stylecomfy's Avatar
    09-12-2017, 11:14 AM
    stylecomfy replied to a thread My Alex in Remembering
    Dear Heather, we are so very sorry for your loss. Our thoughts are with you and your family. I'm not familiar with the disposal/donation...
    3 replies | 685 view(s)
  • kyeev's Avatar
    09-12-2017, 09:59 AM
    kyeev replied to a thread Knowing when it's time? in Transplants
    Wow. I can't actually believe they have only listed you now, with you being on 4L of Oxygen at rest. That scares me to be honest. It's definitely...
    5 replies | 1362 view(s)
  • mom2two's Avatar
    09-11-2017, 04:25 PM
    Hi Kyeev, Sound similar to me. Duke actually just gave me the go ahead a few weeks ago for relocation and transplant, and here I sit in Durham,...
    5 replies | 1362 view(s)
  • Ratatosk's Avatar
    09-11-2017, 01:25 PM
    Sweat tests can fluctuate based on who conducts the testing. In the states it's recommended a test be done at an accredited CF facility. In my...
    2 replies | 509 view(s)
  • Jackoc's Avatar
    09-11-2017, 11:50 AM
    Hi, I'm 23 years old and I've had nasal polyps for a couple of years and get a chest infection every now and again. I was recently sent for a sweat...
    2 replies | 509 view(s)
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