Oldest Person With CF

[Gammaw]

Will you say that when you're 71???

 

[Aboveallislove]

A few weeks past, DS, 6, had a rough morning of temper tantrums and afterwards was exhausted, and in his exhaustion demanded to know "how much more of life?" I said only God knows. He said "how many more minutes do you think I'll be alive?" Then, "how many more seconds?" And then "years?" So I finally just said "77." DS responded: "Do you think so?" And I said "oh, I don't know, only God knows, it could be 77, or 47 or 27 but only God knows." (Oh, how that hurt to say it all so matter-of-factly and nonchalantly!!) But boy did he make me smile when he said "or maybe 97 or 107!!!"

 

[Printer]

Tell DS that I said HELLO

 

[amaral]

For those concerned about prognosis I recommend reading the essay 'The median is n't the message' by Stephen Jay Gold. http://cancerguide.org/median_not_msg.html

 

[amaral]

In my point of view, the saddest thing when the subject is prognosis, are the regional differences. In Brazil the median is 19 years while in Canada is 51!

 

[trghpu1994]

we adopted our cfer from an eastern european country where the expectancy was 13..she was 13 when we got her. she is the exception for cf patients rather than the rule there where they do little infection prevention in the orphanages and if there are other sick kids in the room..then oh well. she is a miracle but at th same time battles against the treatments because she didn't have to do them before

 

[occupyjapan]

The average lifespan for CF being 37 is for the same reason the average lifespan in the middle ages was around that number: so many people died before reaching the age of 10 or so that it skews things towards a younger median age. If you live past childhood with CF (which, sadly, many still don't), the odds of you beating the median age are extremely good.

 

[Beccamom]

I had CF clinic yesterday and my doctor has a patient who is 85 with a positive sweat test of 65. He has had lung and sinus involvement his entire life and recently became PI.

 

[welshwitch]

Wow, that's awesome.

 

[dbtoo2]

I recently had a sinus CT scan, requested by my CF Doc to 'eliminate the possibility of polyps in a 58 year old with cystic fibrosis'. The moron who read the xray wrote in their dx that it couldn't be related to CF because people with CF don't live that long. ... what a moron...

 

[Printer]

db: You should consider a new CF Clinic.

 

[dbtoo2]

It wasn't the CF clinic, it was a local radiology place, which probably has some 3rd world staff read the xrays...