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I have to reinforce what LittleLab4CF said: forget the genetics. UNTIL and UNLESS a Vertex drug is produced that works on YOUR mutation(s), knowing your mutations is a zero-sum piece of trivia. It will NOT determine your lifespan, NOT determine the course of your disease. Only you can...

I don't think the physical ins and outs are all that much different. Same meds, same treatments. But I do perceive a difference in how support networks form and function around men versus women. Men seem to generally stick it out on their own, or with one or two siblings or an SO to provide...

Steve, re: "just around the corner" I'm in complete agreement with your view on that. I take care not to sue the C word around people w/ CF or their caregivers, because I don't believe such a thing will exist in my (or their) lifetimes. BUT... if we can continue to devise drugs like VX770 AND...

Can I just point out that croomabu says the cultures are pseudomonas putida and pseudomonas Fluorescens, and did NOT mention pseudomonas aerginosa? Not all pseudomonas is PA!! These strains of pseudo may or may not be a serious problem. And culturing anything is certainly cause for concern...

I suffered from chronic bowel pain throughout childhood and occasionally still have episodes, though they are far less frequent and far less painful than they used to be. I don't have any solutions, but can highly empathize with what your child is going through.

I have similar experiences. On one hand, I have friends who are courageous, sympathetic, and genuine. I take care not to complain too much about the ins and outs of my disease progression with them, but am quite frank from time to time. In return, they are free to ask honest questions of me...

I've come to believe that a variety of exercise is important because they all exercise our lungs and diaphragms in different ways and each way contributes to mucous clearance. However, I do believe running tops the list. And not a short distance, either, or a minimum 20 minutes, but an hour or...

I recently began using a Nuk sterilizer that Foundation Care sent me. It is easy to use. Rinse the nebs, put the parts in the tray and turn it on. Sometime later, I'll take the parts out and let them air-dry on a paper-towel. I don't want them sitting there wet until my next use, really. The...

Tracking, recording, whatever you want to call it. Borrow or rent a Nonin 3000 or 3500 or similar device and see what's REALLY going on with her sats during these routines. If that leads to simply ruling out sats as part of the problem, then you're down to possible exercise-induced...

A lot of us are on 10 or as much as 20mg prednisone right up to the day of transplant. It does inhibit healing, but...you'll be on a massive dose of steroids the very day of transplant onward. 30mg is, comparatively, a drop in the bucket, though it might be worth trying to wean backwards a...

Passing along this information: ---- Children and adults with cystic fibrosis (CF) need some form of insurance coverage to help pay for medical care and medications needed to treat the disease. Beth Sufian, the author, has developed a general guide with Gilead Sciences, Inc. to assist people...

Excellent suggestions above. Checklist: - bloodwork: iron, electrolytes, hydration, kidney function - are you getting adequate hydration? I always go on IV saline drip overnight the first few days of IV antibiotics. It helps. - nutrition: you can't fight infection without fuel. Additional...

You need hard data, that's what this boils down to. She needs to wear a tracking pulse oximeter for a few practices and routines and see what's going on. If she can maintain sats, then hell yeah the exercise is probably good for her. But if her sats are dropping, that MUST be addressed.

If you're at the transplant stage, it is too probably too late for any Vertex drug to save you from that, even if a perfectly-targeted delta-F508 drug hit the market TODAY. On the other hand, I'm exactly where you're at - just started on o2 yesterday in fact - and could see living 40 more years...

Have you witnessed this yourself, or is that just what she's telling you, so you won't worry so much. I was a teenager myself once, and I know how they think!

While I agree with the comments regarding pre-routine albuterol (by nebulizer may be more effective than by inhaler) and getting O2, I want to point out that she can't be wearing the O2 during the routines - when she needs it the most. Sure, it's "only" 2.5 minutes - but how many times in a...

I know how you feel. I'm still a young man (41) and though my FEV1 hung out in the 50s for a decade, I'm declining more rapidly now (24%) and am actually afraid of what tomorrow's PFTs will show. I probably need to be on oxygen (sats in the mid-80s just from walking) and I guess I should bring...

Well, those are two very sweeping statements and, I think, unsupportable.

Sexuality can vary widely over a person's lifetime. But... I don't think this is about whether you're gay or not. This is about you being perceived as gay, right? I understand! Not athletic, high voice, doesn't express a lot of interest in girls, and...if you have CF...probably emo thin. Am...

In addition to echoing the thoughts of others here, I am wondering why he's on morphine? When I got my port, all I needed was Tylenol for a week. There shouldn't be that much pain. A patient being on morphine is a huge red flag to me. Another red flag is "teaching hospital". No more...