Questions and Comments about CF

[Guest guest]

Hi all,

I am working on our family site and I have a favor to ask.

I am working on a page about the most common questions and comments you hear

when you say that you or your child has CF. Feel free to include the silly ones

as well as the insensitive ones and the natural ones. Whatever sticks out in

your mind most.

For the parents, what was your first reaction aside from shock and despair or

relief to have a diagnosis finally. For example, mine was " how do I know nothing

about CF if it is the most common genetic illness among Caucasians? "

Thanks

[Guest guest]

I always love when I hear " Maybe they made a mistake -they (the children -

all 3 with CF) made a mistake " I smile and say " I don't think they made a

mistake on all 3 " ....as I walk away rolling my eyes.......

If CF isn't bad enough we are forced to deal with well meaning people who

love us but say the most inappropriate things -

" they could get hit by a bus tom. "

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

The best one that sticks in my mind is when our baby-sitter at the time asked

me if I was worried that our middle child might catch CF too!! I educated her

real fast!! It made her feel much better because what I think what she was

really worried about was if CF could be given to the other kids she was

watching. Deb A

[Guest guest]

I have a couple:

" She will outgrow it, right? "

" Does she have seizures? " (that one really irritates me)

" But she doesn't LOOK sick. " (bet we've all heard that one)

My reaction , profound sadness I know, and I at first didn't know if she would

ever be able to go home and was imagining an empty crib at home. When they told

us she had a 50/50 chance of living to be 21 I was relieved. I found out

had CF the day I returned to California ( was hospitalized) after

attending my father's funeral in Texas. so I was in a state of shock over both

things, my father's death was completely unexpected and he was only 58. He died

of a heart attack.

M

Mom of Nick age 21 nocf and age 19 wcf

[Guest guest]

Oh, lots of negative comments....

from his (ex-)pcp who left his cf undiagnosed for 6.5 years in spite

of me begging them to do more tests (I finally specifically asked

for a sweat test and a referral to the cf clinic). The pcp

said " well, cystic fibrosis is really hard to diagnose. " (my son had

failure to thrive at 5 days, constant coughing from 7 months,

bronchial thickening and shadows on his xrays, constant oily

diarhhea, and his 4 sweat test scores ranged from 114 to 120 ...

sound like a tough diagnosis?)

from my son's soccer coach, when he was on his first round (and only

so far) of iv's this september and so was going to soccer practice

with a bandage over his picc line... coach said does he have some

kind of rash, we tried to explain that he had cystic fibrosis, and

the coach said " I don't care " and walked away.

I have actually heard a physician (not a cf specialist) say that cf

is not going to exist in 5 years (gee, wouldn't that be nice?)

Many, many times I've heard " he doesn't look sick " ... I've heard

that even when he clearly did look sick... with dark circles under

his eyes and ribs showing, and retracting with every breath

I have never felt guilty about my son's genes (what was I supposed

to do about it, I had no way of knowing that either my husband or I

were carriers)... but I have felt guilty about not diagnosing him

sooner and having too much trust in doctors

I also did not feel shock and despair. I had been dealing with a

very sick child for years, and finally we had an answer. prior to

diagnosis, we hardly ever slept through the night. since his

diagnosis last march he's only woke up in the night coughing maybe 3

times (and 2 of those were right before his tune up in sept)

My reaction was I need to figure out what to do because I can't

count on anyone else.... I felt (and still feel) a huge level of

responsibility.

Thanks for asking.

Best wishes,

Steph

mom to 7 year old boy wcf, diagnosed last march

> Hi all,

> I am working on our family site and I have a favor to ask.

>

> I am working on a page about the most common questions and

comments you hear when you say that you or your child has CF. Feel

free to include the silly ones as well as the insensitive ones and

the natural ones. Whatever sticks out in your mind most.

> For the parents, what was your first reaction aside from shock and

despair or relief to have a diagnosis finally. For example, mine

was " how do I know nothing about CF if it is the most common genetic

illness among Caucasians? "

> Thanks

>

>

>

[Guest guest]

: If there is a favorite question it came from the doctor I had

been transferred to when the Children's Medical Center in Hartford

decided to move anyone with CF over the age 18 into the fictional " adult

clinic " which was in the same facility. He asked, " How long have you

had CF? " Well trained, obviously. I decided for self-preservation, to

move to the Yale CF center in New Haven. A longer drive, but I'm still

around to make it! Hal :-)

Questions and Comments about CF

Hi all,

I am working on our family site and I have a favor to ask.

I am working on a page about the most common questions and comments you

hear when you say that you or your child has CF. Feel free to include

the silly ones as well as the insensitive ones and the natural ones.

Whatever sticks out in your mind most.

For the parents, what was your first reaction aside from shock and

despair or relief to have a diagnosis finally. For example, mine was

" how do I know nothing about CF if it is the most common genetic illness

among Caucasians? "

Thanks

[Guest guest]

How about the classic line from a peds intern... " How long has your

daughter had CF? " Hmmmm....

e, mom to 10 wcf and Ian 13 nocf

[Guest guest]

I have been off email for a while and catching up on reading and wanted to chime

in.

The dumbest thing I have heard " If this is a genetic disease, then why doesn't

your other girls have it? They must have flunked biology.

Next is, " So when is she going to die then? " This person that said that to me, I

wanted to kill them. I did tell her that you could get killed on your way home

right now. ( She is still alive) I know no religious emphasis, but in the next

breathe I said when God wanted you and home.

Initially a little sadness, but mostly relief to finally find out what was wrong

with Alli as the docs knew something was up but they just didn't know what. We

are just thankful that she doesn't have any lung damage from being mis-diagnosed

for her first 19 months of her life.

Happy & Healthy New Year to Everyone!!

Traci mother of 3 great girls (13, , 10, & 4 w/cf)

Questions and Comments about CF

Hi all,

I am working on our family site and I have a favor to ask.

I am working on a page about the most common questions and comments you hear

when you say that you or your child has CF. Feel free to include the silly ones

as well as the insensitive ones and the natural ones. Whatever sticks out in

your mind most.

For the parents, what was your first reaction aside from shock and despair or

relief to have a diagnosis finally. For example, mine was " how do I know nothing

about CF if it is the most common genetic illness among Caucasians? "

Thanks

[Guest guest]

Thanks everyone for answering! If you haven't yet, keep the questions, comments

and reactions coming! I am adding them all to our site. Feel free to check

them out (and the rest of the site) at http://groups.msn.com/TeamJane It

may take me a while to put them all up but I am working on it!

Mom of 5 with CF and one on the way

Questions and Comments about CF

Hi all,

I am working on our family site and I have a favor to ask.

I am working on a page about the most common questions and comments you hear

when you say that you or your child has CF. Feel free to include the silly ones

as well as the insensitive ones and the natural ones. Whatever sticks out in

your mind most.

For the parents, what was your first reaction aside from shock and despair

or relief to have a diagnosis finally. For example, mine was " how do I know

nothing about CF if it is the most common genetic illness among Caucasians? "

Thanks

[Guest guest]

I might have been working on it when you tried, it should be ok now!

Re: Questions and Comments about CF

i keep getting page cant be displayed, am i doing something wrong?

Patty

> I have added all the questions and comment that have been sent in,

to our site. check it out at http://group.msn.com/TeamJane

if there are any more that I haven't put up, please keep them coming.

> Thanks for your help. I am really glad that I asked this

question. I now know that it's not just me who gets these weird

questions, comments and reactions.

>

> Mom of 5 with CF and one on the way

>

>