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I am in the process of trying to obtain a vibralung. I believe the company is called westmed. Matt is the sales rep and his phone number is 316-371-0339. He is not great with returning messages but is very helpful when I do get him on the phone. I have also been interacting with a woman...

I participated in the phase 3 trial of this drug getting approved for CF. If I recall correctly under 42 kg takes 250 mg every other day and above 42 kg takes 500 mg every other day. This study was published so please have your doctor double check my memory! ☺️

Thank you for your input kmh beauty. Jamest---the aspergillus is interesting and not something that has been looked at. Were your reactionary blood levels high because of the aspergillus in your sinuses (I believe it is called beta glucan and IgE)? I have had the blood levels checked and those...

Thank you very much for sharing your experience Oboe. I am on cayston every other month (nothing currently on the off month as I do not tolerate Colistin or Tobi. Interesting that your fevers occur at night. This is helpful.

It will be two years in October that I have been on kalydeco. I have the G551d mutation. However, I have not benefited in terms of improved Pft's or weight. In fact, I struggle more to keep them up! Over the past year I have run a low grade fever off and on (currently I have had a fever just...

I live in new England and would love the contact info for the company you used to test for mold. Thank you so much!

I am so sorry for your loss. How heartbreaking. I lost my sister when I was 20 (she was 24) and I was crushed. I will be 38 in a few weeks so as hard as it is to believe, it has been 18 years. Tears are streaming down my face as I write this as I still cannot believe she is gone. She was...