Re: Planning one's fammily while coping with cystic fibrosis (sort of) - n

[Guest guest]

Thanks for this post. It ave me goose bumps. I worry that Abby has

a " severe " case, since she has had so many issues so young in life.

You email tells me that that is not necessarily the case. I plan to

print it and share it with Abby's mom.

Thanks for sharing.

Gale

> Although I have cystic fibrosis, and my first two children were

carriers,

> (because I have cystic fibrosis), I did not know that my husband

could

> be a carrier (this is in the Merovingian Period, or Pleistocene or

some

> thing like that) until his nephew's diagnosis was changed

(accurately)

> from coeliac disease to cystic fibrosis and we found this out when

I was

> about four months pregnant with #3. My husband and I looked each

oth

> er in the eyes (blue to dark brown, steadily), gulped and said

simultane

> ously: " Do you get the feeling that. . . . .? " And we both knew.

And we

> were both right--and by anyone's standards, it was far too late to

make

> a change. Kid#3 had a hard time the first few months and even the

first

> few years, and had pneumonia about five times by age nine, and then

> sort of snapped into shape; we had better enzymes by then; the ear

> infections were controlled by the famous TUBES, BUT THOSE SINUSES

WERE A

> WRECK and were dealt with later through surgery.

> Kid is now 36, doing well, working full time, is an electrical

engineer

> who designs stuff like EBCT scans, CT scans, etc. Only 5' talll,

but

> brains to compensate! We got used to it all: I was the practice

run,

> I guess, growing up with cystic fibrosis in a long-forgotten era,

and even

> I made it. So take heart. Those gloomy stats are falling fast,

and the

> newer data suggests a more optimistic outlook--which does NOT mean

> that the whole family will not go nuts in the meantime! Families

DO!

> Love to all of you great parents and prospective parents out there,

> n Rojas

>

>

>