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  • LittleLab4CF's Avatar
    Yesterday, 11:57 PM
    LittleLab4CF replied to a thread Dios in Adults
    It's definitely associated with CF and it seems only CF. Being a person who distrusts almost everything, especially when it comes to absolutes​, I...
    3 replies | 122 view(s)
  • Aboveallislove's Avatar
    Yesterday, 11:02 PM
    Thanks Penny! I'll let him know! He will be relieved!
    2 replies | 24 view(s)
  • PennyBK's Avatar
    Yesterday, 08:14 PM
    PennyBK replied to a thread Question from DS on PICC in Adults
    I've had several PICCs and have not been able to even feel them being removed - definitely has not hurt at all for me and it takes about 5 seconds...
    2 replies | 24 view(s)
  • jaimers's Avatar
    Yesterday, 08:02 PM
    jaimers replied to a thread IV protocol in Adults
    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...
    6 replies | 126 view(s)
  • Aboveallislove's Avatar
    Yesterday, 06:30 PM
    He wants to know when they remove it if it will hurt? And whether they need to put that sticky protective covering or just a bandaid? A big piece...
    2 replies | 24 view(s)
  • Aboveallislove's Avatar
    Yesterday, 05:57 PM
    Aboveallislove replied to a thread IV protocol in Adults
    How strange. I'd think it would be uniform with CFF. I had argued for 14 days because DS hadn't cultured anything new; definitely had RSV; we were...
    6 replies | 126 view(s)
  • stephen's Avatar
    Yesterday, 04:07 PM
    stephen replied to a thread IV protocol in Adults
    I've been prescribed outpatient antibiotic IVs from three different adult CF centers in the New York City area. Similar to "shay" the initial...
    6 replies | 126 view(s)
  • Ratatosk's Avatar
    Yesterday, 11:35 AM
    Hill Rom has come out with a new vesting system, similar to the Afflo (sp) vest. Wonder how this compares to the regular vest system in terms of...
    0 replies | 49 view(s)
  • shay's Avatar
    Yesterday, 10:46 AM
    shay replied to a thread IV protocol in Adults
    Both our pediatric and adult centers do not follow that protocol. Both have been 14 days whether inpatient or outpatient, and then reevaluate to see...
    6 replies | 126 view(s)
  • Ratatosk's Avatar
    04-25-2017, 03:27 PM
    When DS was first diagnosed wcf, I "met" a woman online whose child was diagnosed wcf and had a vest, but later because the because his mutations...
    2 replies | 86 view(s)
  • Lynnfield mom's Avatar
    04-25-2017, 02:30 PM
    Hi Jenn, There are almost 1500 mutations identified that cause CF. The test used for your child only tested for the most common 32. Because of your...
    6 replies | 816 view(s)
  • Aboveallislove's Avatar
    04-25-2017, 01:23 PM
    Have you searched pubmed.com? If you have a name for it I can try to find any research on it/how it is treated.
    2 replies | 86 view(s)
  • kenna2's Avatar
    04-25-2017, 12:40 PM
    So I recently found out in my search for answers in treatment for the swelling and fevers that happen before I get sick that I have an...
    2 replies | 86 view(s)
  • Aboveallislove's Avatar
    04-25-2017, 10:24 AM
    Aboveallislove replied to a thread IV protocol in Adults
    Than\ks! That ma\kes sense and is helpful
    6 replies | 126 view(s)
  • kenna2's Avatar
    04-25-2017, 10:16 AM
    kenna2 replied to a thread IV protocol in Adults
    Yes, a home regimen is 21 days and in house stay is 14 days. This is for a couple of reason I think. At home you're in a normal environment and not...
    6 replies | 126 view(s)
  • Jshet22's Avatar
    04-24-2017, 11:41 PM
    Jshet22 replied to a thread Dios in Adults
    Thank you. I thought it was just seen in cf. just wanted to be sure.
    3 replies | 122 view(s)
  • Aboveallislove's Avatar
    04-24-2017, 10:42 PM
    Aboveallislove started a thread IV protocol in Adults
    Just curious: does your cf center do 14 days IV if you stay in. hospital but 21 if you go home? And do they sa 4 treatments per day the entire time...
    6 replies | 126 view(s)
  • Ratatosk's Avatar
    04-24-2017, 01:06 PM
    Ratatosk replied to a thread Dios in Adults
    That is my understanding. When ds was first diagnosed due to a bowel obstruction caused by meconium ileus, his doctors spoke of possible future...
    3 replies | 122 view(s)
  • Jshet22's Avatar
    04-24-2017, 11:43 AM
    Jshet22 started a thread Dios in Adults
    Hey guys, just a quick question. Is distal intestional obstruction syndrome, (DIOS), seen only in people with cf? Thank you so much.
    3 replies | 122 view(s)
  • LittleLab4CF's Avatar
    04-24-2017, 01:16 AM
    The only thing I have a real complaint about modern shoes, walking, running and anything sport, is when they make the sole about 2 sizes bigger than...
    7 replies | 462 view(s)
  • Robertletizio's Avatar
    04-23-2017, 10:23 AM
    Only has 1.6 hours of use great condition
    0 replies | 139 view(s)
  • Robertletizio's Avatar
    04-23-2017, 10:21 AM
    Robertletizio started a thread Hill Rom 105 in Adults
    I have a Hill Rom vest with 1.6 hours I am trying to sell for $250 obo
    0 replies | 90 view(s)
  • Aboveallislove's Avatar
    04-23-2017, 07:38 AM
    Thanks! He loves gateroade and salt water and has had a ton of both. He also loves all \kinds of potatoes (other than mashed or ba\ked). So I'll...
    3 replies | 210 view(s)
  • LittleLab4CF's Avatar
    04-22-2017, 11:53 PM
    I'm wondering if it is liquid, water, he is craving or something else. Sugar, carbs and simple salt is a short list. Something I have been doing...
    3 replies | 210 view(s)
  • kenna2's Avatar
    04-22-2017, 09:15 PM
    kenna2 replied to a thread Thirsty on antibiotics? in Adults
    Absolutely normal. He has high powered meds running through his system and that's going to dehydrate you. Plus he needs to stay as hydrated as...
    3 replies | 210 view(s)
  • LittleLab4CF's Avatar
    04-22-2017, 02:57 PM
    The marginalized CF carrier is an unfortunate situation and the beginning of countless hours trying to figure out what is going on. As a carrier and...
    1 replies | 281 view(s)
  • Aboveallislove's Avatar
    04-22-2017, 02:19 PM
    Is this "normal?" DS has been as\king for much more water/gateroade than normal. He doesn't have too bad stools and isn't peeing more than typical...
    3 replies | 210 view(s)
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