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What a shame this is just so wrong !

I would think it's because they have research that indicates neither of those genes disrupt the cftr channel individually enough to result in CF but...

Thank you for the encouragement and support and the reminder that I'm doing something that we all can learn from potentially. The pump was implanted...

With DS, his doctor indicated his baseline should be no cough. We were proactive and did chest physiotherapy. Mainly his symptoms were digestive...

I don't have any information on your son's mutations...I'm assuming what the doctor meant by "not turning into CF" was that they may not be...

Something that my parents did was straight out of "Cider House Rules". The orphanage had a sickly boy, presumably from alcohol use by the parents,...

Also to hold breath for a bit when huffing could be helpful. I’ll let you know how it goes. It’s amazing to have a community from all over the world!

These are all such helpful ideas, thank you for your help, really makes me feel that we are not alone. I will speak to our Dr about the IPV and...

If you need a month of Tobi (300mg/5mL Ampules) to tide you over, email me- [email protected]

Go to a CF CLINIC!!!!

I hear you. Our primary pharmacist is a relative and for awhile he was a specialty pharmacist, but the hoops they made him jump thru were just too...

It's been a while, but the main reason I was prescribed it at the time was due to a minor level of infection regarding pseudo. Since then it's also...

The funny thing is that my last two prescription refills were signed by my pediatrician of all people (Their entire practice became so close to me,...

I agree with Jricci...some insurances won't cover certain meds if it's not written from a specialist doctor who sees you for what you take. It kinda...

Novartis Patient Assistance (the makers of Tobi) might be able to help: https://www.patientassistancenow.com/ CFF Compass is another resource:...

Has your GP run any CF cultures? The biggy would be if you're culturing pseudo, or enterbactor choclae or any other bug that is sensitive to tobi. ...

Kenna: It's just called Sodium Bicarbonate. It comes in 5ml vials and you need syringes to extract. Hasn't gone the route where there are mass...

I typed this long reply but I don't think it went through. I still have elevated enzyme levels and unfortunately liver damage. May be from cf in...

Before I saw your post I was going to mention mycobacterium. It's a silent dropper. I was lucky to have it treated last year at National Jewish in...

I moved to Colorado with a higher altitude than I am used to. My o2 has definitely gone down. I've acclimated but I would think this would be...

Dr. Ghogomu in Denver is wonderful. He comes recommended for people with cystic fibrosis. My husband had a huge bleed after sinus surgery and this...

I do something called an IPV. Or intrapulmonary percussive ventilation. It is an old school treatment. I had 3 different vests, they never made me...

That's really interesting. What's it called and have you noticed a difference since you've been on it?

Seems like she's doing the right things. When she huffs: take a deep breath and hold several seconds if possible. She may already know this....