Recent content by damndisease

I’ve been a happier exerciser since I started. This is really one of those situations where everyone’s experience will differ. Way too many variables. Always good to temper expectations. My FEV1 was in the low 40’s before I started and I’m not expecting much of a bump in my test this Friday...

I’ve been on Trikafta for a week exactly. Orkambi and Symdeko did nothing for me (2 copies f508del ). I was at my wit’s end with the return of the phlegm daily and the Trikafta has been like an “off” switch. I had a 5 hour purge that was so damn emotional. Phlegm is almost non existent since...

You do not necessarily have liver disease with cf although you might get it. You have to seriously figure this one out for yourself. A lot of people make decisions and ultimately engage in behaviors they know are gonna be detrimental. Smokers smoke and many people eat bad food (and lots of...

I just looked on the lutrish site for nutritional facts and am not impressed. I don’t take kindly to people who try to profit off of CF patients and I don’t think advertising on this forum is appropriate. 70 dollars is outlandish for a product whose nutritional value seems to come largely from...

I have done it a lot. I can't imagine you are really any more susceptible to germs than in any other enclosed environment where you and others are exerting yourselves. I hear that your immune system is a little compromised while working out fairly strenuously. It will likely mess with your...

CF is a homozygous recessive trait, meaning you need 2 copies of the allele to have a child who "suffers" from the disease. It is very easy to screen for CF and prevent having a kid with CF, if that is a deterrant to you. I take exception to the misery you assume that all of us with the...

CF is a homozygous recessive trait, meaning you need 2 copies of the allele to have a child who "suffers" from the disease. It is very easy to screen for CF and prevent having a kid with CF, if that is a deterrant to you. I take exception to the misery you assume that all of us with the...

CF is a homozygous recessive trait, meaning you need 2 copies of the allele to have a child who "suffers" from the disease. It is very easy to screen for CF and prevent having a kid with CF, if that is a deterrant to you. I take exception to the misery you assume that all of us with the...

Diane, Hmmm. I guess I should be careful giving out recommendations/advice. I certainly never thought it could be that serious. Nobody had ever mentioned the risk of an embolism (I assume that is what leads to an embolization). Yikes. I'll talk with my doctors. They know that I climb...

Hmmm, this is the first time I am writing anything on this forum, I just found it instead of doing my work... The coughing up blood thing is pretty freaky. I am 31 with cf and I noticed that the hemoptysis started happening shortly after I began using hypertonic saline solution inhaled. It...