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Europe has a more established system of health clinics that are the embodiment of holistic treatment of the whole person. Health Spas in both Eastern and Western Europe have addressed respiratory diseases, CF in particular built from a traditional form of treatment before doctors could just give...

Most often when I nebulize with albuterol followed by 7% saline, I have varying degrees of bleeding when coughing up whatever is loosened. My lungs are not compromised by CF but I have chronic aspiration and bronchiectasis. When I am coughing, in addition to thick mucus I often hock up chunks of...

Kalydeco essentially surplants a non DNA base, aspartic acid or D's with the DNA base G or guanine. A T polymorphism should have no interaction with Kalydeco. I don't know if any other helpful moderation would act on the problem caused by T polymorphisms and an important question to ask. Other...

Welcome to the site and welcome to the club. Late diagnosed CFers seem to have GI dominant issues and for many, it is discovered during a flare that tops all other times symptoms gang up. Fortunately the CF medical community is starting to improve the specialist services needed to address...

Zenpep or maybe the combination of immediate release Viocase has been astonishingly effective. Granted I've been taking Zenpep for all of two weeks but my impression is the Zenpep works best compared to Creon. By chance, I got the Viocase about a week before the Zenpep so I did try Viocase and...

As in peanut butter or some diabolical compound that is part adhesive, part irritant with a viscous cohesive consistency that can be extruded as long as you can strain? Or, this intermixed with gas and greatly increased volume that must come out? This is unlikely but I had a gooey oatmeal...

Although I'm 64, I was surprised to read that I apparently have both types of hernias. Actually, I was doing something different when they ran an abdominal CT. Instead of taking a deep breath and holding it in my chest, I pushed my diaphragm down, hoping to get a better image. If something like...

Listening is a gift or a hard learned craft. By profession and personality I am a problem solver which blinds me to the frequent need for commiseration, and emotional support expressed by a post topic. Around the time I began reading CysticFibrosis.com, a cry for support had deteriorated to an...

Epona's thread does an excellent job of explaining the role of dietary fiber and probiotic bacteria in managing digestion. Both are healthy ways of normalizing a dysfunctional bowel. Epona's question about the amount of bowel removed probably wasn't rhetorical and the short story you told begs a...

Anecdotal evidence with such a small population is going to be the best way to gather information and compare notes. I am interested in how this plays out for several reasons. R1158X has been regarded as a nonsense mutation in a number of scientific research papers. It seems that nonsense label...

The same information that a doctor performing triage uses to determine how sick you are can be done at home by you. I often read about this dilemma, go to the ER or call the doctor off hours and I too have debated whether to do one or the other. You have a chronic condition, CF, that makes...

I had a vest for chest infections for many years but never used then daily. I also had one of the early inversion tables or hang ups. The ability to return to vertical quickly is quite simple and as fast as you need. I never thought to combine the two and there is enough good reasons to ask a...

The thirst response in CFers is frequently muted or non existent. In spite of constant reminding by my doctor, it just never sank in. You need a reminder like a favorite water bottle. The reason soft drinks from vendors come with straws is it's been proven customers will consume huge pricey...

Before you go much further, see if he has similar bumps on the other side of his face. One thing that makes sinuses so vulnerable is the fact that they're surrounded by bone. Polyps are growths on the sinus linings and it may not be possible for a polyp to be felt, per sé, from the face side of...

I am so sorry that you've had a less than satisfying experience in your search for a diagnosis. You are absolutely correct that FEV1 is not a reliable diagnostic test for CF. Your doctor is not keeping current. These new fangled genetic tests including the full profile of ~2000 mutations are...

I've wondered how you've been. We need to hear about the success stories, over and over to adequately appreciate the gift to you and the gift of having you as proof that a quality life is possible. Stay well and trust that the world is a little richer having such a Beautiful Soul in our midst...

Pleural effusion? I have great and original lungs for a CFer so I notice things when they go screwy. Pleural effusion is fluid caught between the pleural membranes. It seems like a kidney from its location when I have it too. And the bubbly, twitchy description is right on. Pleurisy involves a...

Sorry, I wasn't clear. Historically I've had low D when tested. To fix this I began taking 10,000 IU of D3 which brought it up close to normal. Vitamins by definition can't be synthesized by the body so they must be in the foods we consume. Vitamins are either water soluble and don't require...

Vitamin B's aid in digestion and is a big reason large doses are in vitamins aimed at CFers. I'm chronically low in D3 and had been taking a 10,000 IU D3 over and above what's in my AquADEK and such for years. My brand new GI doctor ordered a CBC, metabolic panel and a vitamin assay. The test...

I was surprised that your doctor was ordering anything short of a full amplified CFTR mutation analysis, the test for all CF gene mutations. A short test is a waste of effort. With 2 positive sweat tests, there's more than enough reason to run a full genetic test in the range of 2000 different...