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  • Ratatosk's Avatar
    Today, 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 | 204 view(s)
  • Golubicc's Avatar
    Today, 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 | 204 view(s)
  • stylecomfy's Avatar
    Today, 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 | 204 view(s)
  • Ratatosk's Avatar
    Today, 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...
    1 replies | 106 view(s)
  • Rebjane's Avatar
    Today, 05:47 AM
    1 replies | 106 view(s)
  • primarymedical's Avatar
    Yesterday, 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 | 4702 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 | 2801 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 | 663 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 | 663 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 | 470 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 | 1335 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 | 650 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 | 1335 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 | 650 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 | 1470 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 | 650 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 | 1335 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 | 1335 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 | 470 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 | 470 view(s)
  • fel's Avatar
    09-10-2017, 10:20 PM
    fel replied to a thread Adrenal insufficiency in Adults
    Treasuregoddess -- was your son born with AI or did it develop from therapies with steroids? We are having some difficulty determining when he needs...
    7 replies | 1470 view(s)
  • cpm777's Avatar
    09-10-2017, 04:41 PM
    hey guys, what are you looking to know? my name is Chris, 34yrs old, just moved from Denver to NC, been living in Denver the past 5 yrs. I went to...
    5 replies | 842 view(s)
  • heatherbrown's Avatar
    09-10-2017, 01:40 PM
    heatherbrown started a thread My Alex in Remembering
    I just lost my CF son in an accidental shooting. I can't put into words yet, how I feel. I miss him intensely and endlessly. I am here...
    3 replies | 650 view(s)
  • jaimers's Avatar
    09-09-2017, 09:21 PM
    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...
    4 replies | 495 view(s)
  • LunaFaith's Avatar
    09-09-2017, 01:41 PM
    yes this is my mutation as well
  • ToriMom's Avatar
    09-08-2017, 03:21 PM
    ToriMom replied to a thread Newly Cultured NTM/MAC in Adults
    Hi friend, NTM Is Non-Tuberculosis Mycobacterium. My daughter has this in her cultures too, and it's hard to treat. There are wonderful...
    1 replies | 368 view(s)
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