How do they judge the life expectancy

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CFlat

Guest
For example my daughter is 21-months old (dx at 18-months) . And the life ex. rate went up to 36 years of age. Those that keep this age growing, were not able to benefit from all the types of treatments that these little ones today are able to start. Are we to "assume" that she will go well beyond that rate because of her age, the advances that have been made, and future findings. I know we cannot assume anything with CF, but this has been on my mind since they came out with the new age.
Thank you,

Chuck, father to Avery 21-months w/cf, and Rhett 4-months carrier
 
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anonymous

New member
Our physician told us there is no way for him to speculate about our daughter's life expectancy. He would never tell us her prognosis - states it is not possible with CF. The only thing he would tell us with regards to life expectancy & the "average" that we hear about is that boys tend to have a better life expectancy than girls.

Connie
 
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gstvixen

New member
My brother and I both have CF, he was diagnosed at birth, and I was diagnosed after he came along, when I was 2. I'm 23 now, and he is 21, and trying to get on the transplant list. When we were born, the average age was in the teenage years. Then by the time we were 10 it was in the 20's, and now the age is about 40. It's too hard for a doctor to "tell" when or what age a person with CF will live to, but there are so many advances with CF research now and the future looks promising for all people with CF. All I can offer you is to always make sure Avery does her treatments (whatever they may be) and always support any athletic activities she may want to pursue, exercise always helps get out the mucus out and helps the lungs stay strong and healthy.
 
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anonymous

New member
Thanks for the replies. The outlook is promising for all those affected by CF. Your right so much has been done since you and your brother were dx. One can only hope that those same advancements will continue to move the "life expectancy" age even higher.

Chuck father to Avery 22-months w/cf, and Rhett 4-months carrier
 
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Cutecurlz

Guest
Hi....37 yr old female with CF. Well I guess I beat you all...I am 37 and plan on living a full and happy life. My brother who also has CF is 27...he was doing fine up until 3 months ago...he's now on a lung tranplant list but is doing great. My theory is...YOU RUN YOUR CF...DON'T LET THE CF RUN YOUR LIFE. We were both diagnosed at birth.
 
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anonymous

New member
I will soon be 42 years old on 06/13/05. I have cf and had my double lung transplant on 12/06/02. The reason Cf isn't considered just a childhood disease anymore is because of better medications and new treatments. I feel and these are just my feelings that kids growing up with cf today have a much better outlook. I was able to keep my original lungs till i was 39. I truly feel there is more on the Horizon to help battle this disease!!

Me<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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Emily65Roses

New member
Well if this helps, when I was born, the life expectancy was 18. Now I'm 21 and still going. So maybe I'll make it to 36, who knows.
 
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anonymous

New member
THere is no way to tell. It depends on the severity in the individual, complications they have already, other health problems they may have, treatments and medications they are on, if they have had a transplant or not, and the mutation they have. Things can change, all i can say is stay as healthy as you can so that hopefully you are well enough to live long enough to try better treatments in the future and etc. I always found thinking about my "life expectancy" exhausting. Why focus on a number. Just live everyday the best you can and dont stress about numbers otherwise you become one!
 
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seasprite

New member
Hi Chuck,

Here is a nice quote for you from Francis Collines, co-discoverer of the cf gene and director of the National Genome Project. Note that it was published in 1992, before Pulmozyme, TOBI, Zithromax, or widespread availability of the Vest:

"Survival has progressively improved over the past 40 years, with median survival now being about 29 years. Because this calculation includes individuals from an earlier cohort, it is estimated that an individual born today with CF would be expected to survive about 40 years, even without further advances in therapy. " -- <u>Science</u> <u>256</u>, 774, 1992

Since there have been significant advances in therapy in the intervening 13 years, and many more possibilities are in the pipeline, I think it is not unreasonable to hope that, if we take care now, our children may well have a chance at something approaching a normal lifespan. This is why some of us, at the risk of being called "overprotective", have been willing to spend a lot of time and energy keeping our kids' airways as clear as possible for as long as possible. When the breakthroughs in therapy occur, we do not want pre-existing scarring of the lungs to keep our kids from being able to get maximum benefit from the advances.

Bambi, mom of Jordan, 16, w cf
 
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