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PHENOTYPE IS NOT GENOTYPE. For pete's sake everyone STOP holding up the genetic testing as some holy grail of diagnosis for CF. IT IS NOT. Hell, we don't even know how most of the discovered mutations even work! We don't know what MOST of human DNA does. And we're learning so much lately...

Mallory, are you exercising daily?

You're a wise Mommy, Jenny.

I didn't take any pain meds other than ibuprofen for a couple of days to keep inflammation under control, at the doctor's orders. I hurt, but not the same kind of hurt as the deeper, longer lasting sports injuries I had. My port felt for while like I'd torn something, sure, but localized...

You and I are in the same position. Miserable PFTs - but no need for oxygen yet. It's bizarre, I admit. My instinct tells me - and I have nothing to confirm this, so you should ask your doctor - is that people with as little reserve as us go very quickly when we start to go. When all of a...

Hey Ed...just a hint for later: when she puts in a nice box wearing your best suit and favorite boots and everybody says nice things about you for fifteen minutes -- you're dead. Just thought you'd like to know the signs.

CF expenses are high, that's for sure. Even with good insurance, where I hit my "catastrophic cap" each year about October or November, there's still a lot that insurance doesn't quite cover in terms of office visits, clinics, labs, etc. Not to mention the cost of transportation to all the...

In Newsweek a couple of issues ago, there was a short article on the recent discovery of what all our "dark matter" DNA does. About 85% of our DNA has been assumed to be junk - inactive, unimportant, filler material; leftovers from several billion years of evolution. But it isn't unimportant...

What does your husband do in the Army? Perhaps he could get an appointment to Fort Hamilton, here in NY? It is a small (very small) base, but has NY Presbyterian in the city. There are also some military bases in New Jersey that are near this area. Within a two-hour drive, at least.

But what if this "god" is not a factor in one's life? Where does one draw strength from?

I don't think you stay on the "bad trip" post-transplant. You're initially on crazy-high doses of pred, but that tapers down and becomes a steady dosage per day. You eventually adjust and get your emotions back under control, my friends tell me. I've asked because I've also been concerned...

Excellent song! Really enjoyed that. Now...let's get you into a recording studio!

I would never tell a kid that CF makes life better. That's not what I was implying, either. I am not normal, or even next to normal. But I can say that I have found my set of challenges to be enervating, on the whole, and believe I would not be nearly as successful if I didn't have CF always...

Pity the "normals" - for they are BORING. They have no true appreciation of life, no distinction, nothing to make them stand out, nothing to drive them to epic achievements.

Dowling, I do two breathing treatments a day while I do my Vest. My nebulizers include albuterol, pulmicort, hypertonic saline, Cayston or Tobi (alternate months), and pulmozyme. It took a long time to build up to having to do five medicines each time. It's a routine part of daily life and...

You've got blood coming out of two places it's not supposed to be coming out of, and you don't know if you should go to a hospital? Are you nuts?? GO. You can't do ANYTHING - job or seeing parents - if you're dead.

Wow. This seems extraordinarily negative. What is going on in your life that THIS is your contribution in a thread where a new CF parent needs some reassurance that it's not the end of the world?

Not quite true. CF is a diagnosis of observed phenomena, not genetic predilection. The sweat test confirms the body's systemic chloride imbalance, which leads to all our problems (and is caused by that stupid little faulty protein). Having the genetic coding for a faulty CFTR does not...

I'm not sure what article you were reading, but I didn't see anything in that article that suggested running was not helpful or even over-rated. Neither does it say that anaerobic training is more helpful than aerobic. What it ACTUALLY SAYS is that: a) the link between pulmonary capacity and...

I guess what we're saying, Doug, is that a diagnosis of CF is no reason for early termination of the pregnancy. Twenty years ago, I would have considered it a viable and merciful choice. But when median survival rose above 35 for the first time and we began to see far, far fewer patients die...