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I was supplied with a Precision Medical Easy Air. Psi is also adjustable. Has two filters both of which are only rinsed once a week. I was told that it is built for those who need a compressor 24/7. No problems so far. It was covered by insurance after doc wrote a letter explaining how many...

God go with you, Jeanne!

Sorry for such a short response earlier. I was in "kid mode" as I call it. Questions about sterilizing or disinfecting all the accessories that come with our meds are persistent, aren't they. I suspect there are as many routines out there as there are people. There have been numerous...

I'm ready for a thorough discussion of this.....those are the same questions I've entertained, Aboveall and 2roses. Later tonight.....I'll be back! Stay tuned!

I suspect I'm prone to oversimplification, but am I off the mark for suggesting that the lower your lung function, the more likely Orkambi will not be helpful and potentially hurtful? It has been said in this thread that the side effects after starting are more severe in lower functions, bit...

Hi Aboveall. We use an Optichamber. I haven't used Vortex but our CF RT gave us one of those electrostatic ones which turned rapidly to a lump of plastic when I even tried to clean it in a microwaveable steam bag! I knew it couldn't be sterilized, just washed, but I didn't care. If it can't...

Cam, so good to hear from you! I was getting very worried when you didn't check back in for so long! But now we know.....I'm glad to hear they found what needs to be treated. I'm sorry to hear you have three of the heavy duty bugs. My first question for you is whether you have cultured these...

Amen! I have spent years fighting this. After the last two simply fighting for a copy of my kiddos PFT results, it took letters to the Administrator, numerous phone calls, arguments, more letters and even an extended phone conference with the legal department! And then finally just a few...

On the couch or floor. We put his nebulizer compressor on a table next to him or on the floor if that's where he's sitting. Maybe a laptop would work better for your son. Mobile so he can sit anywhere. I think the cushions on the couch would absorb better. Just tell him to sit upnstraight...

I'm glad your son's getting more intensive treatment at last. I suppose knowing how to treat unusual genetics is difficult. But I would think culturing pseudemonas is .....well, still culturing pseudemonas. Treat it. So it's hard to understand why it was not done. Since it didn't even show...

I was afraid of that. I would love to hear why he wasn't notified of the culture results and wasn't put on an antibiotic. Please do share when you find out.....

I wondered too Printer. I can't imagine a CF Center not notifying someone they cultured pseudemonas, but I also can't imagine a regular docs office running a culture and coming up with pseudemonas. It usually takes a CF Center or hospital lab to come up with that one.....

Mu suggestion is only based on the fact that it's a long weekend, the CF Clinic here is not staffed but the hospitals pulmonary/CF floor and ER are appropriately staffed. I wouldn't want to wait until everyone is back from holiday!

How long have you been using Miralax once a day? It can take a week or more for it to really kick in and I've had the doc prescribed it more than once a day too. But ask first. In addition, once it gets you going, don't quit. Its usually a good idea to keep taking it for a couple of weeks...

You have great information here, but I'm a little confused. Did you say that he was culturing pseudo but you don't know when that culture was done? If he's been culturing it since June or July, especially if it's the first time, you should have been notified immediately and treatments begun...

Great video, Treasure! Great kid! You must be very proud of him.

It had to be you Printer!!!! You're a treasure!

Amen! So glad they are being proactive and that you trusted your instincts and pushed! Blessings!

Hi Cam. I'm hoping you're feeling better today or more confident in your medical team and their ability to help you through this. I am not a doc, as you know, but I have seen the occurrence of mucous plugs mentioned in this forum as one of the symptoms of aspergillus. I also see on the forum...

Great link. Thanks for digging it up Aboveall!