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I'm pre-transplant at NY Presbyterian and have heard the lectures several times. They have very good reasons for each and every dietary restriction. These rules aren't being put in place just to somehow test you; they're there for the patient's health. I should think that patients and...

Marci, you're not alone. I've always been up front with my employers and have rarely felt that my CF was the cause of not getting the job again (I'm a freelancer). Some of my jobs are long-term, recurring gigs and my employers have definitely felt the impact of my CF, but I think because I was...

I'm not on SSDI yet, but I do know that a transplant is considered an automatic disability qualification for one year.

Doglover, it's great to hear she is relatively symptom-free. That won't last forever. But perhaps it can last a long time! Fel and Doglover: One thing EXTREMLY IMPORTANT: do NOT allow your children to meet up with or be around other people with CF in any way, shape, or form. When going to...

I would not have a general peds be diagnosing or prescribing things for lung-related problems. I'd only have a CF pulmonologist do that. Different steroids do different things in the long term. I certainly wouldn't wish for a kid to be on oral steroids at all, if it can be helped...

Additionally, if you get a printout of your PFT results, you'll see the exact numbers that are used as the 100% benchmark. These numbers were taken from a number of healthy subjects a couple of decades ago and, since they do not vary, are what everybody else is measured against. This is a...

I also use the Altera system when I travel, though not all my meds are cleared for it. I just got tired of compressors or needing an outlet. The Altera system can run on AA batteries - HUGE bonus, IMO. When I fly, I do pack everything (for up to a week) into a single carry-on. I've rarely...

Ha! I was just thinking about cats and o2 tubing. After more than three months of ignoring the tubing, one of my cats has figured out that he can get attention by tugging on my o2 line. He just paws at it, not doing damage, but it does get my notice! The other cat thinks it's great fun to...

Yeah, different courses for different horses. My first permanent drops in lung function didn't come until I was in grad school in my late 20's. They declined slowly and steadily after that, despite becoming a runner. Real decline has only been in the last three or four years and I'm now at...

Baco, I can't point you toward financial aid, as it's been more than a decade since I was last in school, but I do want to ask about your career goals? What have you been doing for 8 years in college that DIDN'T result in a teaching certificate? (if, assuming, teaching is what you had in mind...

TJ, the sweat test is still the gold standard, despite what any genetic testing may reveal. Although research and treatment is trending toward it, we're not treating chromosomes - we're treating a collection of symptoms that add up to a disease. These symptoms all have in common the salt...

You know, this whole conversation here might be easier if you didn't type "significant other" so often. OK. So you're either bi or gay and neither your gender nor your SO's have much bearing on this discussion; we get it. Since I'm male and bi, I'll assume you are too. :) And that your SO is...

Call your doctor.

Bellithorp, I agree with the others and would add a couple of thoughts: 1) You may need to take your daughter to a child therapist for a while. This is a huge change for her, a bizarre change, and once she probably sees doesn't apply to other kids. So she may need a professional's help...

Also make sure the site is 100% clean and dry. If there's even a tiny amount of alcohol left, it will eventually burn your skin.

Shouldn't that be, technically, "beat the Guinness world record", rather than the "beat the Guinness book of world records"? Anyway, I sent mine.

I just want to say: thank god for Lidocaine!! I've never been sedated for any of my lines, until my port was put in.

Thirstiness all the time. Peeing all the time. If your symptoms progress to tingling or pain in the extremities, then the diabetes has already damaged you and you are well on your way to losing your eyesight &/or limbs.

Another vote here for Foundation Care. They've been really great to work with and sometimes I can't believe how much they can throw in for free (vitamins, hypertonic saline)

bloggymom, you didn't say if you're CFRD, borderline, or what. Assuming you're developing CFRD or have already been diagnosed. It is interesting to me that the breakfast that works best for you is mainly starch - long-chain carbohydrates. No simple sugars, very little fat. The beans should...