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  • Imogene's Avatar
    Today, 08:03 PM
    Imogene replied to a thread Blockchain Caucus USA in Adults
    Please reach out to the representatives and let them know we are beginning our Blockchain Pilot: endeavoring to pay patients for their data! All...
    3 replies | 1525 view(s)
  • Imogene's Avatar
    Today, 06:45 PM
    Imogene replied to a thread Blockchain Caucus USA in Adults
    I reached out to Representative Eric Swalwell of California: Rep Swalwell! Very sorry to hear your daughter Cricket was in the hospital for...
    3 replies | 1525 view(s)
  • stephen's Avatar
    02-15-2019, 02:28 PM
    stephen replied to a thread Cayston Equipment? in Adults
    I rinse the "connector" on the Nebulizer Connection Cord with hot water when it becomes sticky.
    1 replies | 205 view(s)
  • MirrorMirror's Avatar
    02-15-2019, 01:49 PM
    MirrorMirror started a thread Cayston Equipment? in Adults
    Hi guys I'm just wondering how all of you clean your Cayston equipment (the grey && black cord, purple handset, etc) because I notice that my grey...
    1 replies | 205 view(s)
  • MirrorMirror's Avatar
    02-15-2019, 01:43 PM
    I'm scared of the things I have heard about Clomid. However, every medication has it's up and it's downs right? Hopefully my CF doctor can point me...
    8 replies | 2112 view(s)
  • kosdancer's Avatar
    02-15-2019, 10:03 AM
    kosdancer replied to a thread Increasing Lung Function in Adults
    I'm so sorry to hear that! I know it's terrifying to lose so much so quickly. Some ideas... I assume you already had/have had IV antibiotics and...
    1 replies | 366 view(s)
  • Meggy!'s Avatar
    02-14-2019, 03:23 PM
    Meggy! replied to a thread Newly Diagnosed in Newly Diagnosed
    Yes it is, it's one of the ones listed on the website that you gave me when I input my information.
    4 replies | 113 view(s)
  • stephen's Avatar
    02-14-2019, 03:00 PM
    stephen replied to a thread Newly Diagnosed in Newly Diagnosed
    Meggy, Is it at an accredited CF Center? That should be easy enough to check by going to the Cycsic Fibrosis Foundation website or to the link...
    4 replies | 113 view(s)
  • Meggy!'s Avatar
    02-14-2019, 02:20 PM
    Meggy! replied to a thread Newly Diagnosed in Newly Diagnosed
    Yeah I made an appointment for Monday with the doctor that my regular doctor suggested.
    4 replies | 113 view(s)
  • drplan's Avatar
    02-14-2019, 12:28 PM
    drplan posted a visitor message on drplan's profile
    Disaster Recovery | Disaster Recovery as a Service | Benefits of Disaster Recovery Using Cloud Computing | Cloud Disaster Recovery
  • stephen's Avatar
    02-14-2019, 10:02 AM
    stephen replied to a thread Newly Diagnosed in Newly Diagnosed
    I'll beat Printer and tell you to find a Cystic Fibrosis Foundation accredited CF Care Center! Follow the link below and enter your location. There...
    4 replies | 113 view(s)
  • Meggy!'s Avatar
    02-14-2019, 02:09 AM
    Meggy! replied to a thread Who are you in a nut shell in Adults
    My name is Meggy I am a female I am 29 years of age I am married to a Airforce Airman We live in Northern California I love hanging out with...
    764 replies | 234906 view(s)
  • Meggy!'s Avatar
    02-14-2019, 01:51 AM
    Meggy! started a thread Newly Diagnosed in Newly Diagnosed
    Hi, I'm newly diagnosed with CF and I am 28 years old. I know that might seem really old to be being first diagnosed but that's what happened to me....
    4 replies | 113 view(s)
  • sunshine39656's Avatar
    02-13-2019, 09:46 PM
    Any tips on increasing lung function? I've had a 20% decline in the past month due to pneumonia and am trying to get mine back up, but it's not...
    1 replies | 366 view(s)
  • LittleLab4CF's Avatar
    02-13-2019, 03:41 PM
    In today's world everybody seems to have tattoos. When I was young, getting something as noticeable as a tattoo, nose rings, gauges and such labeled...
    8 replies | 1470 view(s)
  • scanboyd's Avatar
    02-13-2019, 02:24 PM
    UT Southwestern Dallas Tx. Great place for having Lung Transplant!
    6 replies | 1672 view(s)
  • shay's Avatar
    02-13-2019, 09:50 AM
    shay replied to a thread Pic line vs. Port from mstein in Adults
    My daughter had her first port placed when she was a pre-teen. Her surgeon at our peds hospital placed it on her side. It is so nice since she can...
    8 replies | 1470 view(s)
  • rubyroselee's Avatar
    02-12-2019, 07:58 PM
    I went to nursing school, but after I got licensed I didn't want to expose myself to all the germs. So I got my MBA and weaseled my way into...
    6 replies | 2691 view(s)
  • b4herbiesbug's Avatar
    02-12-2019, 07:21 PM
    some hospitals and interventional radiologists outright refuse to do arm or leg ports. there are none in kansas city that will honor such a request....
    8 replies | 1470 view(s)
  • chelsearose0112's Avatar
    02-12-2019, 07:57 AM
    Hi Matthew! Sorry to hear you are having a hard time. I helped to create a YouTube channel for this exact reason! We are a collaborative YouTube...
    2 replies | 1175 view(s)
  • Ghizlane's Avatar
    02-12-2019, 07:42 AM
    Hi I am from MOROCCO. My little baby is class I/class II mutations and she is PS till now. She is 9 months. Diagnosed at her birth thanks to...
    6 replies | 2015 view(s)
  • jricci's Avatar
    02-12-2019, 12:00 AM
    https://www.foundcare.com/Patients/everyday-specials.html I now have to use Accredo for Cayston, but used to get it filled through Foundation Care...
    2 replies | 900 view(s)
  • jricci's Avatar
    02-11-2019, 11:46 PM
    jricci replied to a thread New in Teenagers and Young People
    Hi Matthew. Sorry to hear you're feeling alone. CF can be such an isolating disease. There's a CF discord where you'll be able to connect with others...
    2 replies | 1175 view(s)
  • kenna2's Avatar
    02-11-2019, 10:40 PM
    The bleeding happens because of increased heart rate, air doesn't make a difference. I have never been able to work out outside in Ohio's cold winter...
    3 replies | 1581 view(s)
  • kenna2's Avatar
    02-11-2019, 10:30 PM
    Having my first port I was asked where I wanted it. Since I have a fear of being stabbed in the chest, I opted for the arm. They do them in arms,...
    8 replies | 1470 view(s)
  • b4herbiesbug's Avatar
    02-11-2019, 08:50 PM
    port has advantages yes. but what they dont explain to you is the pains after. just basic nerve pain constantly. youll need to request a .5inch...
    8 replies | 1470 view(s)
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