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I've been aware for years that my diet is garbage. In recent years I've been suffering from a lot of respiratory inflammation and GI issues, and I'm thinking it's time to get serious about improving my diet. My problem is, the dietary recommendations for inflammation/GERD/constipation often...

Was just logging in to post this exact question, so thanks outofthisworld! I've been doing Pulmozyme after airway clearance, because my previous CF doctor said it was better to give it a chance to stay in your lungs instead of coughing it right out during airway clearance. But what I've found...

ADDITIONAL IMPORTANT INFORMATION: I recently found out that original Medicare will only cover enteral nutrition if it is the person's primary/only source of nutrition. Supplemental tube feeds, as is common among CF patients, are NOT covered by original Medicare. The only way to possibly get...

UPDATE: Just spoke with another insurance agent (through Heartland Financial Group, 844-502-6780), and she was able to get me Medigap coverage through Americo for $173 a month. I won't fully believe it until the paperwork is submitted and I get a card, but that is significantly better than the...

In case anyone else is looking for the same info, here's what I've learned: IMPORTANT INFORMATION about applying for Medigap coverage in ALL STATES: When you first enroll in Medicare, you have the right to join any plan that is offered in your coverage area. You cannot be rejected or charged...

I was a full-time social worker doing in-home family therapy, and finally had to stop 2 years ago. Fall 2014 I had a bad exacerbation after catching something from one of my clients, and it took months to get back to working full-time -- then shortly after resuming working full-time, I had...

Does anyone here know about Medicare plans in NJ? I become eligible in January and have been tearing my hair out trying to figure out what to get. I live in south Jersey so my clinic is in Philadelphia, which adds another complication. Currently trying to decide whether I'm better off with the...

I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being...

Just wanted to let you know that they currently have 10mL vials in stock for 14.49 each. I can't believe Mucomyst is STILL so hard to get, it's beyond ridiculous already! Eliana 34 w/ CF

Just got my medicine! I ordered it on 3/8/13 and it arrived today. It's name-brand Mucomyst produced by WellSpring Pharmaceutical Canada Corp, I ordered it online from NorthWestPharmacy. Still exploring whether insurance will cover any of the cost, but if you can afford it this seems like a...

Just got my medicine! The order went in on 3/8/13 and arrived today. It's name-brand Mucomyst produced by Wellspring Pharmaceutical Canada Corp. I'm still exploring whether I'll be able to get insurance to cover any of it. So if you can afford it, NorthWestPharmacy.com seems like a reliable...

My grandmother is on oxygen and we have the same problem, one of our cats is OBSESSED with the tubing. For a while we wiped it down with one of those Critter Ridder type products, but it had to be reapplied almost daily and was really annoying. We actually ended up sewing a cloth sheath to cover...

I posted a couple days ago but I guess it got blocked because I included a website? I've been having the same problem, and even the compounding pharmacy I contacted is out of the base ingredient. Last week I placed an order with an online Canadian pharmacy because I'm just that desperate. I have...

Um.... am I the only one who just uses plain old tap water? Am I killing myself? Eliana 34 w/ CF

Seconding Autumn here. I used to be able to tolerate Tobi, but over time I gradually became more reactive to it. I stopped using it at all for a couple years because it induced such severe breathing problems and I was able to get by without it. I then started getting it through a compounding...

I don't think anyone mentioned this one: Sometimes while I'm sleeping my feeding tube gets disconnected, and the nutritional supplement keeps pumping until I wake up in a cold, sticky puddle. Nothing like having to get up, wash off, get changed, and change the sheets in a semi-concious stupor in...

A couple months ago I tried to refill my Mucomyst perscription and was told by the CF pharmacy that it was on backorder. I still had some overstock and my doctor thought there would be more available by the time I ran out. I finally ran out about 3 weeks ago, and guess what? Still can't get it...

I used to culture this in my teens and early twenties, it was difficult to treat because it was resistant to so many antibiotics, BUT it's not impossible. I haven't cultured it for several years now, so over time with the right meds it's possible to get it under control.

I used to culture this in my teens and early twenties, it was difficult to treat because it was resistant to so many antibiotics, BUT it's not impossible. I haven't cultured it for several years now, so over time with the right meds it's possible to get it under control.

I used to culture this in my teens and early twenties, it was difficult to treat because it was resistant to so many antibiotics, BUT it's not impossible. I haven't cultured it for several years now, so over time with the right meds it's possible to get it under control.