Re: New CF Dad-Jenna

[Guest guest]

Jenna,

Paige has two of the 508s as well. But they never told me about it being worse

then other kinds....I am more concerned now....she is three, and has been sick

quite a bit in her few years, hospitalized, gtube...treachal malascia...aortia

pexy...etc.

She cultures MRSA...and had cultured PA twice, but no longer.

Mom to KM 8 wocf, and Paige 3 wcf, and author of " Juggling Cystic Fibrosis. A

Health Journal "

Re: New CF Dad

Hi Joe,

I have a 19 month old with CF. She has been hospitalized twice with CF

related issues. Once when she was 5 months and once when she was 6 1/2

months. She has two copies of ^F508. We saw a geneticist who is supposed to

be world reknown. He told my husband and I that having two copies of ^F508

was the worst case scenario, that this was the severist of mutations and that

it was indeed a hard road to tow.

When I asked my daughter's CF doc about the issues with double copy of ^F508,

his eyes filled up and he said let's get through the challenges of the first

5 years and take it from there. I could not get a 100% concrete answer.

Said this does not necessarily determine the case scenario. Everyone is

different.

I know several people with the double copy of ^F508. Two of these people

have had double lung transplants, liver transplants. My sister-in-law is one

of these people. She is now 39. She has an unbelievable will to live every

minute to the fullest. She is a true miracle. The other woman is in her 50s

and is also doing quite well.

My daughter is a spit-fire and full of life. She drops fast asleep by 8:30

every night.

She is a fighter. She fights CPT like a son of a gun. The only time she

enjoys it is if she watches the Wiggles and she literally bounces up and down

while she having it done which is 7 days a week twice a day after pulmicort

nebulizer treatments.

I also have a 6 1/2 and 4 year old without CF.

This list is a wonderful site for CF. Everyone is kind and friendly and very

informative.

It makes life a lot easier. If you are having a bad day, they encourage you

and lift your spirits. It is truly a wonderful group of people.

Good luck,

Jenna