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When did I say that the Cystic Fibrosis Foundation had inaccurate numbers? Actually in the article it states that people with CF who have private health insurance have the same death rate and age as people in Canada. It's people that are on government funded insurance in the US that have a...

That's great that it is increasing! I did see recently about Canada being about 10 years longer. Although I remember reading that it may not be entirely accurate that they are that far ahead if the US, but I can't remember what the reasoning was now. I'm not sure why people with CF would be that...

Thanks for the link! I will definitely check it out. I've done a ton of research in the last month. We have signed up to walk in the great strides walk next month, and are trying to raise money.

I'm trying not to dwell the negative. I think it's probably like you said when you're child is mild or not having a lot of issues it's easier not to think about the negative. In the span of a few weeks I've found out my 12 year old who I thought was pretty healthy has cf, is severely PI, pft 67...

Thanks! I will definitely still plan for his future, and expect him to also. Up until last month I had what I thought was a healthy 12 year old kid. Yeah he coughed on and off which I attributed to allergies or maybe some very mild asthma. In the span of 2 weeks I find out he has cf...

The lifespan they state isn't an average though. It's a halfway point. The median survival is 37 years old. Meaning of patients with cf half die before this age, and half die later. If you wrote all the ages down from highest to lowest and halfway through you marked a line that would be the...

"Median survival is a statistic that refers to how long patients survive with a disease in general or after a certain treatment. It is the time -- expressed in months or years -- when half the patients are expected to be alive. It means that the chance of surviving beyond that time is 50...

On the cff it says median age of 37. The median would be if they took the ages of everyone that died with cf and wrote them down from oldest to youngest and halfway down drew a line. That would mean half died before 37 and half lived longer. Obviously many of those could have died before...

I know it's so strange how people with the same mutations can have such different manifestations of the disease. I know I would hate for my son to have diabetes on top of everything else, but you're right nothing else to do but just deal with it.

I hope it's much longer. I've looked at the cff foundation Facebook and see a lot of comments from people saying they lost a young child or teen. Or a cf Facebook group with lots of people in their 20s and it all makes me worry. Which is why I wondered about their quoted life expectancy. But it...

I have one other issue that is concerning me that I'm going to ask the doctor about. I have online access to all his lab results. His first glucose was a little high, so they did a fasting glucose and a 2 hour glucose. His fasting and 2 hour were both in the prediabetic range. Two hour was 157...

It also makes me wonder if the 37 year lifespan for cf would not be that high, if they excluded patients with the "mild" class mutations who likely wouldn't have been diagnosed with cf before they could find so many mutations. I don't think any cf is mild because of the issues it causes, but in...

I know they say that certain cftr mutation pairings cause a more "mild" form of the disease or are more likely to affect sinuses/gi and not as much the lungs leading to the longer lifespan of people diagnosed late with cf. It does seem strange to me though that even siblings with the same gene...

That doctor was probably too embarrassed to come back after that. Thankfully our CF clinic is at the hospital so that works out well for us.

You didn't offend me at all. No one has offended me here. Everyone has been great and I appreciate all the information and encouragement. He turned out to be severely PI. Severe PI on the fecal elastase test is 99 or less and his was 23. It seems crazy because his weight seemed normal until...

Thank you so much for sharing this with me. I know there is no way to know for sure what the course of a specific person's illness will be, since there are so many factors involved. Our son's stories do sound pretty similar though. It's nice for me to hear of other people diagnosed later in...

Thank you! The clinic wasn't open on Sunday, but I called them the next morning and let them know what was going on and what he was started on. They said the treatment was appropriate when I talked to them, but later I talked to the NP, and she said they got his sputum culture back and will be...

Is she sitting on the toilet for long periods, because she can't go? Is she on anything for constipation?

Thank you! Yes it seems to be one thing after another right now, and really worries me that his disease is progressing. I hope they find out what is going on with your child soon. I saw that you were still waiting for a diagnosis. I really hope for you and her that it is something more easily...

I'm not sure if our insurance covers other enzymes. Our insurance has tiers so for generics we pay 10 percent. So for a lot of things like antibiotics we only pay like 50 cents. Then for brand names I think it's 20 percent. The Zenpep without insurance was close to 3000 dollars, but our copay...