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  • Gibson75's Avatar
    Today, 03:51 PM
    Gibson75 replied to a thread Atypical CF in Newly Diagnosed
    Thank you for your reply Ratatosk. Yes I have heard of some CF's that have a positive sweat test and have very little symptoms when they are young....
    2 replies | 380 view(s)
  • veggiebin's Avatar
    Today, 11:49 AM
    I was reading a post on DIOS from April and your comments on pancreatitis/mucus barrier. I find your posts informative, so I thought Iíd ask your...
  • Alorance9571's Avatar
    Yesterday, 02:22 PM
    Alorance9571 replied to a thread Cipro and Tendinitis in Adults
    Thanks Kenna, Thatís what I was thinking. My physical therapist is wonderful. I start Cayston next week so as long as my reaction to that isnít...
    2 replies | 266 view(s)
  • kenna2's Avatar
    Yesterday, 01:32 PM
    kenna2 replied to a thread Cipro and Tendinitis in Adults
    I sometimes get it in my shoulder from doing IV meds and yes it's worth it. Strength training/ physical therapy will help. The important thing is to...
    2 replies | 266 view(s)
  • Alorance9571's Avatar
    Yesterday, 01:09 PM
    So Iíve finished Cipro for my first pseudomonas Infection and am left with Tendinitis in my knees. This started when I first started taking the...
    2 replies | 266 view(s)
  • Donna Thomas's Avatar
    Yesterday, 01:42 AM
    Flutterby FUNdraisers for cystic fibrosis are embarking on a family fun day. Run, ride or walk. A 7.7k route along side the river Taff. The midway...
    0 replies | 12 view(s)
  • Imogene's Avatar
    05-18-2018, 07:02 PM
    This survey is only available to primary Caregivers of children with Cystic Fibrosis aged 12-24 months old and eligible for the medication...
    0 replies | 228 view(s)
  • fel's Avatar
    05-16-2018, 12:09 PM
    fel replied to a thread Adrenal insufficiency in Adults
    Update: We figured out the cause of the adrenal insufficiency/low cortisol. It was the budesenide (steroid) in his sinus rinses, used to treat...
    8 replies | 4051 view(s)
  • fel's Avatar
    05-16-2018, 12:00 PM
    fel replied to a thread 13-25 year olds - we need you! in Adults
    Hi, There is a thriving reddit/discord community for CFers -- you may want to tap into them for your study. ...
    1 replies | 232 view(s)
  • stylecomfy's Avatar
    05-14-2018, 04:11 PM
    stylecomfy replied to a thread CF related diabetes in Adults
    Hi Julie, I do think the sliding scale is for more severe CFRD meaning they need long acting insulin to cover their baseline and then the short...
    10 replies | 1739 view(s)
  • julie61554's Avatar
    05-14-2018, 10:22 AM
    julie61554 replied to a thread CF related diabetes in Adults
    Thanks for the information. My doctor never mentioned anything to me about a sliding scale. I go see her next week so hopefully I can get answers...
    10 replies | 1739 view(s)
  • kenna2's Avatar
    05-12-2018, 10:01 PM
    kenna2 replied to a thread CF related diabetes in Adults
    It depends on the person. The insulin you do when you eat (short acting) is for the carbs you eat to cover only. You should have a sliding scale for...
    10 replies | 1739 view(s)
  • julie61554's Avatar
    05-12-2018, 12:23 PM
    julie61554 replied to a thread CF related diabetes in Adults
    I have another question if anyone knows the answer.....I went ahead and used the insulin for breakfast this morning as the doctor had recommended (I...
    10 replies | 1739 view(s)
  • stylecomfy's Avatar
    05-10-2018, 08:06 AM
    stylecomfy replied to a thread CF related diabetes in Adults
    Hi Julie, I do mix it into all sorts of food, about a tablespoon at a time. I use in my coffee especially in the mornings, because I'm very groggy in...
    10 replies | 1739 view(s)
  • julie61554's Avatar
    05-09-2018, 07:12 PM
    julie61554 replied to a thread CF related diabetes in Adults
    Your post is very helpful. My trainer actually recommended MCT oil to help me get extra calories. Do you use it mixed in your meals? Is there a...
    10 replies | 1739 view(s)
  • stylecomfy's Avatar
    05-09-2018, 05:15 PM
    stylecomfy replied to a thread CF related diabetes in Adults
    Hi Julie, my CFRD manifests very similar to yours (my peaks are maybe a little higher but they come down just as quick, and my hba1c is always...
    10 replies | 1739 view(s)
  • julie61554's Avatar
    05-09-2018, 04:33 PM
    julie61554 replied to a thread CF related diabetes in Adults
    Thank you both for your responses. I guess my numbers aren't bad...I just know anything over 140 is not normal so I was using that as my guide. I...
    10 replies | 1739 view(s)
  • mom2two's Avatar
    05-09-2018, 07:58 AM
    mom2two replied to a thread CF related diabetes in Adults
    I'd like to reiterate what Kenna2 said; your numbers are not that high at all. Eat the food you need and insulin for it, conservatively on weight...
    10 replies | 1739 view(s)
  • Hcameron997's Avatar
    05-07-2018, 10:54 PM
    Hcameron997 replied to a thread Vest For Donation in Adults
    Hi everyone! I recently found an old vest that I would like to donate to anyone in need! It is a pink adult small. Doesnít come with tubes. Let me...
    6 replies | 1903 view(s)
  • jricci's Avatar
    05-07-2018, 08:00 PM
    The CFF is hosting a virtual event for those with CF and their caregivers on Sunday, June 3, from 4-9:30 p.m. ET. There will be keynote speakers and...
    0 replies | 258 view(s)
  • kenna2's Avatar
    05-06-2018, 09:45 AM
    kenna2 replied to a thread CF related diabetes in Adults
    Your numbers are not that high at all. The thing to keep in mind is that your CF is also playing a huge factor in your high readings. Your body is...
    10 replies | 1739 view(s)
  • julie61554's Avatar
    05-05-2018, 02:29 PM
    julie61554 started a thread CF related diabetes in Adults
    Hi all....I was diagnosed with CFRD last September. When I initially saw my endocronologist for the 1st time, my a1c was 5.8. But I didn't see...
    10 replies | 1739 view(s)
  • Imogene's Avatar
    05-05-2018, 11:21 AM
    We ended the survey at 1212 Participants! Wow, you came through with loud voices. We found that data privacy, security and monetization are...
    30 replies | 14571 view(s)
  • derick's Avatar
    05-05-2018, 10:29 AM
    derick replied to a thread Cromolyn sodium (Intal) in Families
    Hi Megan, i'm interested to try that combo can you help me ?
    20 replies | 1027 view(s)
  • Alorance9571's Avatar
    05-03-2018, 09:18 PM
    Thanks yíall. The achiness went away but started back up again, worse. And the side effects of the tobi are terrible. Going to post another thread...
    3 replies | 918 view(s)
  • kenna2's Avatar
    05-03-2018, 10:42 AM
    kenna2 replied to a thread Aerobika and nausea in Adults
    The Vibralung is still a newer form of airway clearance(maybe 4 years old) that uses a speaker that emits sound waves. You hold it in your mouth like...
    3 replies | 515 view(s)
  • spring92's Avatar
    05-03-2018, 12:23 AM
    spring92 replied to a thread Aerobika and nausea in Adults
    Oddly enough for me it feels like I'm going to throw up more when its not a productive cough. If that makes sense... Like, if I'm getting good globs...
    3 replies | 515 view(s)
  • kenna2's Avatar
    05-02-2018, 04:23 PM
    kenna2 replied to a thread Aerobika and nausea in Adults
    I've never felt nauseous while doing it but that was awhile ago. I now use the Vibralung which I feel is a lot more effective than the Vest and...
    3 replies | 515 view(s)
  • carolinen's Avatar
    05-02-2018, 03:30 PM
    Yes.Any increase in infective burden in your body, whether pseudomonas,staph, ntm etc can all trigger aches and pains or reactive...
    3 replies | 918 view(s)
  • Imogene's Avatar
    05-02-2018, 10:59 AM
    I am back from the conference! It went very well and I have a few blogs to tell the story! Our survey is almost to the 1200th participant. I met...
    30 replies | 14571 view(s)
  • Rebjane's Avatar
    05-02-2018, 10:54 AM
    Sorry I wanted to see if that post ok. Anyway, Good hand washing and getting vaccinations is important. Flu shots every year for everyone in the...
    3 replies | 526 view(s)
  • Rebjane's Avatar
    05-02-2018, 10:47 AM
    I had written a post and it disappeared. Anyway, i have a daughter with CF. She is 15. in fact she has never had a sweat test because she was...
    3 replies | 526 view(s)
  • Ratatosk's Avatar
    05-02-2018, 08:57 AM
    Ratatosk replied to a thread Atypical CF in Newly Diagnosed
    DS' symptoms were mainly digestive and sinus. He cultured H. Flu and would get a sinus and/or ear infection. He cultured pseudo usually with not...
    2 replies | 380 view(s)
  • Ratatosk's Avatar
    05-02-2018, 08:49 AM
    DS was diagnosed as a newborn before newborn screening due to meconium ileus. Genetic testing for most common mutations showed CF. He had a sweat...
    3 replies | 526 view(s)
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