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Doug, I have double deltaF508. And I will turn 41 on Monday. With the treatments and medications available to today's CF patients, I would say to brace yourself -- to raise your child to full adulthood, enjoy his/her triumphs and successes, and - in all probability - he or she will live long...

I also see Dr Dimango at Columbia. I feel I'm in good hands.

Good on ya Darcie. I'll be participating in mine here in Brooklyn weekend after next. Have a great ride!

Americans don't have the coordinated, concerted willpower to foment and sustain "unrest".

Wow. I wish he were still alive to see this day. I've sent emails out to my friends in those regions seeing if they can find a bottle for me.

Why all the tests? Why the reliance on a sweat test number to see if Kalydeco is working? Either there is clinical improvement or there isn't. So far, there seems to be improvement. You can't tell in just a short couple of months. Give it the full six. Heck, I'd say give it a year - long...

Get oxygen. exercise with that.

I'd like to disagree with Solo. Diabetes is not the worst. I, too, take multiple daily injections and test several times a day. My diabetes is under excellent control. And I find it less odious to keep up with than CF. CF is so TIME consuming. And the number of prescriptions far outweighs...

Enzo, we've already been down the road of the whole "cure for CF" thing, so I won't recapitulate here. I will say that you're too young AND too healthy, right now, to be freaking out about transplant. Survival rates vary by center. Some people have the good fortune to be able to choose from...

Lindsey, I've been wondering about what really happens after transplant in regards to breath training. I am not so sure it's the lungs we have to work so hard to "open up". Pretty sure they're ready to go, especially after viewing videos of lungs in the ex-vivo perfusion machine and seeing...

Did your doctor really use the word "cure" enzo? That's irresponsible verbiage, especially coming from a physician. There is no CF cure. Not now, not in the near future. The drugs that have been developed and are in the development pipeline are major leaps forward in CF treatment, of...

Dave, pardon my bluntness, but your assertion is pure BS. I know several transplanted cystics who hit the OR in great shape in every regard EXCEPT for their lungs. They worked long and hard to make sure that was so. It is possible to run, bicycle, do yoga, swim, and weightlift on oxygen. I'm...

It's a nice letter, but I have my doubts about how well it will be received. Maybe it's just how I grew up, but I seriously doubt any of the other parents give a crap about your kid. If you can say something to a whole group of them in person at a PTA meeting or whatever, it carries a lot more...

Sounds to me, on both cases, like the syringe wasn't screwed on well enough. To have the saline flush normally and then the heparine just won't go simply points to the spring valve not being open. Perhaps your hep-lock syringes aren't perfectly compatible with the valve type being used. Screw...

Kalydeco is not a cure. You should still be using your vest and exercising, even if you think you don't need it. UNTIL your doctor tells you to DC the vest. But not until then.

If you want a tattoo, you better get one before transplant. Because after transplant - verboten.

Yes, the new logo is boring. But sometimes, that's the point. The Chase logo is also boring. But unique - and because of that and its constant association with the name, you can't forget it. My industry intersects at the fringes with the advertising and marketing industry. I know loads of...

Yeah, the blood is fine. It was very diluted w/ the last of your medicine. And, as djcfnurse notes, your nurse SHOULD be drawing back blood upon access. A port that will flush but won't draw back is on its last legs.... Cris

I've got to go with Sara on this one. *In general*, I think Sara is right. People w/ severe lung disease don't generally survive into their fifties and beyond. The existence of a handful of you who do have severe lung disease and have for a long time and weren't diagnosed until late is...

Beautifully done! We with CF seem to have a certain drive that others don't, more often than not. Nice to see it in action. I finished a 10K last weekend, myself. But there were no sandbags involved! Still, at FEV1 of 28% and nearing my 41st birthday, I guess I felt a little like a Spartan...