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I had issues like your son and I didn't have a positive sweat test until I was 20 years old. Until that time I had many inhaled meds and antibiotics several times a year. Was told it could be allergies and went through a three year course of allergy shots during my teens. No change. After that I...

For those of you who have read any of my other posts, you will know that I hade a double lung transplant in June of this year. Despite the fact I haven't grown cepacia for over a year, my doctors in British Columbia sent me to Toronto for transplantation in early May. Prior to me leaving, they...

I usually find Pulmozyme in the fridge on the bottom shelf on the right hand side. Just kidding. LOL What everyone has said here about stopping inhaled nebs during and while recovering from a hemoptysis is the same thing I've always been told. It's generally the hypertonic saline that affected...

I usually just carry my gym bag with me when I know I'm going out for any extended period of time. First of all, nobody questions it because it's from a major chain of gyms and you see a hundred of them a day just walking around the city, Second, it's got lots of pockets so I can keep my meds...

Considering the first successful lung transplant was done 30 years ago yesterday, I'd say pretty dang far. I know people from my CF Clinic that are more than 15yrs post and doing great. Medications to combat rejection are improving all the time. Additionally, don't worry about the risk of...

I only had nebs for three months post transplant (tobramycin) and then the discontinued the nebs. I still have ventolin in case I need it, but haven't needed to use it yet. I had mentally prepared myself for transplant long before my CF team broached the topic with me. I knew by my early 20s...

He has to find some exercise somewhere or his lung function will likely drop more quickly than it should. Find something physical he likes to do, be it walking, biking, skateboarding, rollerblading, dancing, swimming, etc.. Exercise doesn't mean he has to use a treadmill or stationary bike or go...

I took three antibiotics continually for 8 years. One nebulized, one oral, and one in my sinus rinse. And that was on top of any IV antibiotics I had in the meantime. It's quite common among CFers.

I was told by my doctors absolutely no St.John's Wort, but not because of any of the reasons you listed above. It is a natural immune system booster and I'm post transplant. Anything that boosts immune system post transplant is a no-no.

My lung function was very good 80% and above until I was 27 years old. In my 28th year I had five hospitalizations within a seven month period to treat a very aggressive double pneumonia. My lung function dropped to about 60% and stayed there for three years. Then I dropped about 10% a year for...

The answer to that largely depends on where you live because every country and even some states and provinces have differing rules. In my case, my recovery went quite well, and my transplant doctors gave me the all-clear to start looking for work again approximately three and a half months post...

I was only told no grapefruit and no garlic capsules (in prepared foods is ok). No over the counter vitamins and minerals unless I clear it with my doctors first. They just want to make sure I don't take anything with immune system boosting properties, like Echinacea, St. John's Wort, or...

My sinus specialist has always told me to mix 2ml of Gentamycin antibiotic in with every sinus rinse that I do because then the antibiotic actually gets into the sinuses where it can help. IV antibiotics are fine for the lining of the sinuses, but they do absolutely nothing for mucous/fungus...

The fact of the matter is sputum stinks! Consider where the air you breathe out is coming from... The inside of your lungs where the sputum is. Naturally, when you breathe out, your breath is going to take on the smell of the sputum. This is going to hold true even if your dental hygiene is...

While it's true that the CF doctors don't usually consider it an emergency until you cough up more than 1/4 cup of frank blood within an hour, I've always been told that any amount of bloody sputum and especially frank blood (except in the hour or so immediately following hypertonic saline...

I've never taken Creon. I don't believe it's even available in Canada where I live. Here we get enzymes with the brand name Cotazym, and I take three 20mg capsules with every meal and I have never felt bloated because of them. Perhaps see if that brand is available in the UK?

Thank you, Eliana. My Godmother is a cat person and I managed to get a hold of her and she suggested a bitter apple solution so I picked some up at the pet store about half an hour ago and sprayed all my tubing with it. So far, so good, but I think night time will be the test. If that doesn't...

When I was younger I went to the family doctor that my parents chose. He said for years that I had chronic bronchitis, probably due to allergies. I was tested for allergies and was found to have four allergies, and proceeded to take allergy shots for three years. I no longer had any allergies...

I wasn't even diagnosed until I was 20, and I lived for several years after that without noticing much of a difference. My first decline severe enough to warrant an inpatient hospital stay was at age 27, and since then I've averaged about two inpatient hospital stays a year. I went on home...

I've been on home oxygen for 4 years and I've had my cat the entire time. Until yesterday, he's never shown any interest in playing with my oxygen tubing. Yesterday, I woke up and wasn't getting enough oxygen and found he'd chewed on the tubing overnight and punctured it. I had a speare set of...