new member question

[Guest guest]

Hello,

My name is Susie H. and I have three children. A 19 yr.old w/o cf, a 16

yr.old w/0 cf, and a 14 yr old son w/cf. We have been very fortunate that

n (our son with cf) has been very healthy. He had a lot of problems a

few yrs. back with stomach pain which finally (after I think a year of tests)

was diagnosed as appendicitis. After that was removed things were much

better. n is on pulmozyne, tobi, antibiotics, creon, etc. and is pretty

good about his chest therapy and pills. He has a really positive attitude and

very seldom lets cf get him down. The other day he brought up the male

reproductive system that he is studying in biology, naming the different

parts. I realized that he has never been talked to about the probability of

being sterile. I pretty much panicked (not in front of him!), and felt so

guilty, but didn't know what to say, etc, etc. It seems when this stuff

happens my husband is out of town, so I had no one to talk to. I called his

cf doc and she was great and is sending me some info. But I thought someone

might have dealt with this and could give me their ideas and support. My

husband is very supportive and said he would talk to him. I'm afraid I would

lose it and make everything seem worse than he might feel it is. I don't

know. Please if anyone has any suggestions, let me know. Thx so much

Susie H. mom to n

[Guest guest]

Hello Suzie H.,

I would love to know how you actually talk to your son about this if it is

not too personal. I think of this aspect alot and would appreciate any advice

also.

Mom to Elliot

10mths wcf

[Guest guest]

In a message dated 12/4/01 4:43:33 PM Central Standard Time,

tbirdpride@... writes:

<< The other day he brought up the male reproductive system that he is

studying in biology, naming the different parts. I realized that he has never

been talked to about the probability of being sterile. >>

Oh gosh, Susie! I can relate to this! When my son was your son's age, I too

often wondered how this should be handled. But unlike you, I knew I couldn't

leave it up to my son's father because those types of situations embarrassed

him a lot. (I remember when my son was about 7 or 8 and he asked why we have

bulls on our farm -- he knew why we had cows! I was standing at the stove

cooking and my son's dad happened to walk into the room at that exact time --

the question stopped him in his tracks! But I just told my son that we

needed the bull to be the daddy so the cows could have babies because then

they'd give milk. I still remember how pink my son's dad got but he later

told me that was a good answer!).

Anyway, starting around age 17 I was progressively growing concerned about

how much my son had learned on his own about the reproductive issue. When he

was 17 1/2 he started dating this girl -- his first serious dating

relationship. One day we were in the kitchen, and my 5' 10 1/2 " son was

sitting on the kitchen counter casually going through the cupboards to see

what snacks we had. I don't remember now what originally brought up the

subject -- but I'm never one for letting a teachable moment slip by! I think

I was reading a notice from his school that it was time for the annual talk

by the school nurse about AIDS or something like that...

So, while we were on the topic, I just asked my son how much he knew about CF

and the reproductive system. He squirmed a bit, buried his head in the

cupboard on the pretense of looking for food, and said, " Ummm... some. "

I waited until he'd unearthed his head from the food cavern and said

nonchalantly, " Okay.... then maybe you know about 99% of males with CF are

infertile. BUT, just because you have CF doesn't mean you can go out and

test the theory. You can still get a sexually transmitted disease just like

anyone else! "

He tried so hard not to grin and started rummaging back in the cupboard! I

felt relieved that at least the subject was now out there for discussion.

(And I have found condoms in his wallet so I think he listened...).

So look for those teachable moments. You'd be surprised what comes up. (Oh,

bad pun! Sorry :-)

Kim

[Guest guest]

That message about what comes up really made my day. Never laughed so hard

with any of the other mailings

from P.A.

[Guest guest]

In a message dated 12/4/2001 8:24:14 PM Eastern Standard Time,

kpaynecows@... writes:

<< " Okay.... then maybe you know about 99% of males with CF are

infertile. BUT, just because you have CF doesn't mean you can go out and

test the theory. You can still get a sexually transmitted disease just like

anyone else! " >>

I worry how I will discuss that too. My boys are 5 and 9.....when they talk

about what they will let their kids do I think about it. Then I think about

technology today and maybe by the time they are older it would be a big issue

(no pun)...

CF affects every freaking aspect doesn't it? If chronic life doesn't get you

you'll catch something at the Hospital while taking the kids to the

Dr........ Once at the Hospital we saw 2 ambulances hit EACH OTHER!!!!!!!My

kids thought it was funny! I hope they were coming from dropping patients

off and were empty.

This subject is so difficult on MEN....My husband was blown away when he

heard that....

Rosemary in New York with three children with CF - they are 11, 9, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

Susie,

I have a friend with cf (male) and he father twins. Also others we know who

have had transplants now are going through IVF to remove the sperm that way

so they to will be fathers. Maybe the leaflets will have all that in there

for him.

from Aust,.

new member question

> Hello,

>

> My name is Susie H. and I have three children. A 19 yr.old w/o cf, a 16

> yr.old w/0 cf, and a 14 yr old son w/cf. We have been very fortunate that

> n (our son with cf) has been very healthy. He had a lot of problems

a

> few yrs. back with stomach pain which finally (after I think a year of

tests)

> was diagnosed as appendicitis. After that was removed things were much

> better. n is on pulmozyne, tobi, antibiotics, creon, etc. and is

pretty

> good about his chest therapy and pills. He has a really positive attitude

and

> very seldom lets cf get him down. The other day he brought up the male

> reproductive system that he is studying in biology, naming the different

> parts. I realized that he has never been talked to about the probability

of

> being sterile. I pretty much panicked (not in front of him!), and felt so

> guilty, but didn't know what to say, etc, etc. It seems when this stuff

> happens my husband is out of town, so I had no one to talk to. I called

his

> cf doc and she was great and is sending me some info. But I thought

someone

> might have dealt with this and could give me their ideas and support. My

> husband is very supportive and said he would talk to him. I'm afraid I

would

> lose it and make everything seem worse than he might feel it is. I don't

> know. Please if anyone has any suggestions, let me know. Thx so much

>

> Susie H. mom to n

>

>

>

[Guest guest]

Hi, I was going to say the same kind of thing as .

I have an 11 month old, and Cameron being sterile was one of the first

things I thought about when he was diagnosed at 2-weeks.

It is important to remember that males with cf are sterile because the

vas deferens (spelling???) is not present and the sperm cannot get out -

not because he does not produce sperm.

It is possible for the sperm to be extracted from him to fertilize an

egg through ivf.

I have a good friend who had cancer as a teen who is sterile and he

isn't lucky enough to even have this option.

Pat

Father of Cameron 11 months wcf

> Re: new member question

>

>

> Susie,

>

> I have a friend with cf (male) and he father twins. Also

> others we know who have had transplants now are going through

> IVF to remove the sperm that way so they to will be fathers.

> Maybe the leaflets will have all that in there for him.

>

> from Aust,.

> new member question

>

>

> > Hello,

> >

> > My name is Susie H. and I have three children. A 19 yr.old

> w/o cf, a

> > 16 yr.old w/0 cf, and a 14 yr old son w/cf. We have been very

> > fortunate that n (our son with cf) has been very

> healthy. He had

> > a lot of problems

> a

> > few yrs. back with stomach pain which finally (after I

> think a year of

> tests)

> > was diagnosed as appendicitis. After that was removed

> things were much

> > better. n is on pulmozyne, tobi, antibiotics, creon,

> etc. and is

> pretty

> > good about his chest therapy and pills. He has a really positive

> > attitude

> and

> > very seldom lets cf get him down. The other day he brought

> up the male

> > reproductive system that he is studying in biology, naming the

> > different parts. I realized that he has never been talked

> to about the

> > probability

> of

> > being sterile. I pretty much panicked (not in front of

> him!), and felt

> > so guilty, but didn't know what to say, etc, etc. It seems

> when this

> > stuff happens my husband is out of town, so I had no one to

> talk to. I

> > called

> his

> > cf doc and she was great and is sending me some info. But I thought

> someone

> > might have dealt with this and could give me their ideas

> and support.

> > My husband is very supportive and said he would talk to him. I'm

> > afraid I

> would

> > lose it and make everything seem worse than he might feel it is. I

> > don't know. Please if anyone has any suggestions, let me

> know. Thx so

> > much

> >

> > Susie H. mom to n

> >

> >

> >

[Guest guest]

I concur with your positive attitude, Pat. I am hoping that by the time

Santosh is old enough to want to be a father, there will be further

technological advances to help remove the sperm and make him a parent with

even more ease than is possible today.

You're right - some people don't have the option. I think it is very

difficult to hear for men - my husband was DEVASTATED when he first heard

the news about sterility. I was disappointed also, of course, but focused

more on the fact that our son was going to get better after his diagnosis

with enzymes and treatment.

The glass is half full here, too!

Krishnan

Mom to Santosh, 4wcf and Leela, 2wocf

[Guest guest]

Dear

When I found out about the sterility it hit me straight away that not only

was I going to have my child taken but that I would never be a grandmother.

However in the past 8 years things have changed a lot and I believe it is

now possible for him to father a child via IVF because the sperm is present

it's the vas deferens that is missing.

This is something we will have to broach around the teenage years I suspect.

At the moment if he mentions things like 'when I have a child' I just say,

that's right. He has just been through IVF/PGD with us when I tried

unsuccessfully to have a baby this way this year. I think the real test

will be if CF Partners are prepared to try IVF but that comes down to how

much dollars as well plus their desire to have a child just like other

people.

Regards Margaret Todd

new member question

> >

> >

> > > Hello,

> > >

> > > My name is Susie H. and I have three children. A 19 yr.old

> > w/o cf, a

> > > 16 yr.old w/0 cf, and a 14 yr old son w/cf. We have been very

> > > fortunate that n (our son with cf) has been very

> > healthy. He had

> > > a lot of problems

> > a

> > > few yrs. back with stomach pain which finally (after I

> > think a year of

> > tests)

> > > was diagnosed as appendicitis. After that was removed

> > things were much

> > > better. n is on pulmozyne, tobi, antibiotics, creon,

> > etc. and is

> > pretty

> > > good about his chest therapy and pills. He has a really positive

> > > attitude

> > and

> > > very seldom lets cf get him down. The other day he brought

> > up the male

> > > reproductive system that he is studying in biology, naming the

> > > different parts. I realized that he has never been talked

> > to about the

> > > probability

> > of

> > > being sterile. I pretty much panicked (not in front of

> > him!), and felt

> > > so guilty, but didn't know what to say, etc, etc. It seems

> > when this

> > > stuff happens my husband is out of town, so I had no one to

> > talk to. I

> > > called

> > his

> > > cf doc and she was great and is sending me some info. But I thought

> > someone

> > > might have dealt with this and could give me their ideas

> > and support.

> > > My husband is very supportive and said he would talk to him. I'm

> > > afraid I

> > would

> > > lose it and make everything seem worse than he might feel it is. I

> > > don't know. Please if anyone has any suggestions, let me

> > know. Thx so

> > > much

> > >

> > > Susie H. mom to n

> > >

> > >

> > >

[Guest guest]

Dear ,

Thx for your positive words. I have heard of that too, but I read that a lot

of times the sperm are not mature or strong enough to fertilize an egg, and

it costs a fortune to do the ivf. but, you know I'm going to be positive. Who

knows how much more they will be able to do in just 5 or 6 years. Keep the

faith!!

Susie - n's mom