Re: The return of Morey oh no!!

[Guest guest]

In a message dated 12/1/2002 4:56:26 PM Central Standard Time,

brmorey@... writes:

> HI all,

> I am a former member of this group who is returning now. The people who

> subscribed early when this list first began may remember me. For those who

> don't, I'm , I'm married to (22 yrs!). We have 2 kids, Nick is

> 20 and doesn't have cf. is 18 wcf. We live in Placentia CA which is

> in Orange County, south of LA. was diagnosed when she was 8 months

> old due to dehydration and electrolyte imbalances. She also had a cough

> and had been losing weight, first she was dx'ed with failure to thrive, but

> it didn't take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be hospitalized

> or do home IV's in over 3 years. That's a record for her I think. She

> hasn't even needed any oral antibiotics since March and she used to be on

> something practically all the time. She is on tobi and maybe that is

> making the difference. I'm not really sure but I am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back and I'm

> looking forward to getting to know the rest of you. WOW this list has

> gotten huge . I guess and Torsten are still moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@... (new address in case you have me on an address list)

>

Hi ,

I don't think I have ever talked to you before. Welcome back!! I have three

girls and two of them have CF. My oldest was 6 when she was diagnosed and my

youngest was almost 2. My oldest had polyps in here nose that is how we found

out she had CF. We have also been off and on Tobi for the last year. We have

only done IV's once since my oldest was diagnosed. My youngest so far is the

healthiest of the two. I think it was because of the early diagnoses. We live

in Iowa were it is COLD!! I hope to hear more about you and your family. Deb

A

[Guest guest]

In a message dated 12/1/2002 4:56:26 PM Central Standard Time,

brmorey@... writes:

> HI all,

> I am a former member of this group who is returning now. The people who

> subscribed early when this list first began may remember me. For those who

> don't, I'm , I'm married to (22 yrs!). We have 2 kids, Nick is

> 20 and doesn't have cf. is 18 wcf. We live in Placentia CA which is

> in Orange County, south of LA. was diagnosed when she was 8 months

> old due to dehydration and electrolyte imbalances. She also had a cough

> and had been losing weight, first she was dx'ed with failure to thrive, but

> it didn't take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be hospitalized

> or do home IV's in over 3 years. That's a record for her I think. She

> hasn't even needed any oral antibiotics since March and she used to be on

> something practically all the time. She is on tobi and maybe that is

> making the difference. I'm not really sure but I am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back and I'm

> looking forward to getting to know the rest of you. WOW this list has

> gotten huge . I guess and Torsten are still moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@... (new address in case you have me on an address list)

>

Hi ,

I don't think I have ever talked to you before. Welcome back!! I have three

girls and two of them have CF. My oldest was 6 when she was diagnosed and my

youngest was almost 2. My oldest had polyps in here nose that is how we found

out she had CF. We have also been off and on Tobi for the last year. We have

only done IV's once since my oldest was diagnosed. My youngest so far is the

healthiest of the two. I think it was because of the early diagnoses. We live

in Iowa were it is COLD!! I hope to hear more about you and your family. Deb

A

[Guest guest]

In a message dated 12/1/2002 4:56:26 PM Central Standard Time,

brmorey@... writes:

> HI all,

> I am a former member of this group who is returning now. The people who

> subscribed early when this list first began may remember me. For those who

> don't, I'm , I'm married to (22 yrs!). We have 2 kids, Nick is

> 20 and doesn't have cf. is 18 wcf. We live in Placentia CA which is

> in Orange County, south of LA. was diagnosed when she was 8 months

> old due to dehydration and electrolyte imbalances. She also had a cough

> and had been losing weight, first she was dx'ed with failure to thrive, but

> it didn't take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be hospitalized

> or do home IV's in over 3 years. That's a record for her I think. She

> hasn't even needed any oral antibiotics since March and she used to be on

> something practically all the time. She is on tobi and maybe that is

> making the difference. I'm not really sure but I am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back and I'm

> looking forward to getting to know the rest of you. WOW this list has

> gotten huge . I guess and Torsten are still moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@... (new address in case you have me on an address list)

>

Hi ,

I don't think I have ever talked to you before. Welcome back!! I have three

girls and two of them have CF. My oldest was 6 when she was diagnosed and my

youngest was almost 2. My oldest had polyps in here nose that is how we found

out she had CF. We have also been off and on Tobi for the last year. We have

only done IV's once since my oldest was diagnosed. My youngest so far is the

healthiest of the two. I think it was because of the early diagnoses. We live

in Iowa were it is COLD!! I hope to hear more about you and your family. Deb

A

[Guest guest]

Hi ,

welcome back! That's great news about ! And since you liked to compare

her to my cousin's daughter I am happy to tell you that is doing

very well too.

If you are still in contact with some " oldies " from this list, feel free to

invite them too. I saw on another list that Carol Tusin-Weber is online

again too.

How do you like your new house?

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

The return of Morey oh no!!

> HI all,

> I am a former member of this group who is returning now. The people who

subscribed early when this list first began may remember me. For those who

don't, I'm , I'm married to (22 yrs!). We have 2 kids, Nick is 20

and doesn't have cf. is 18 wcf. We live in Placentia CA which is in

Orange County, south of LA. was diagnosed when she was 8 months old

due to dehydration and electrolyte imbalances. She also had a cough and had

been losing weight, first she was dx'ed with failure to thrive, but it

didn't take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be hospitalized

or do home IV's in over 3 years. That's a record for her I think. She

hasn't even needed any oral antibiotics since March and she used to be on

something practically all the time. She is on tobi and maybe that is making

the difference. I'm not really sure but I am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back and I'm

looking forward to getting to know the rest of you. WOW this list has

gotten huge . I guess and Torsten are still moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@... (new address in case you have me on an address

list)

>

>

>

[Guest guest]

Hi ,

welcome back! That's great news about ! And since you liked to compare

her to my cousin's daughter I am happy to tell you that is doing

very well too.

If you are still in contact with some " oldies " from this list, feel free to

invite them too. I saw on another list that Carol Tusin-Weber is online

again too.

How do you like your new house?

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

The return of Morey oh no!!

> HI all,

> I am a former member of this group who is returning now. The people who

subscribed early when this list first began may remember me. For those who

don't, I'm , I'm married to (22 yrs!). We have 2 kids, Nick is 20

and doesn't have cf. is 18 wcf. We live in Placentia CA which is in

Orange County, south of LA. was diagnosed when she was 8 months old

due to dehydration and electrolyte imbalances. She also had a cough and had

been losing weight, first she was dx'ed with failure to thrive, but it

didn't take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be hospitalized

or do home IV's in over 3 years. That's a record for her I think. She

hasn't even needed any oral antibiotics since March and she used to be on

something practically all the time. She is on tobi and maybe that is making

the difference. I'm not really sure but I am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back and I'm

looking forward to getting to know the rest of you. WOW this list has

gotten huge . I guess and Torsten are still moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@... (new address in case you have me on an address

list)

>

>

>

[Guest guest]

Hi ,

Welcome back. This is so funny... I called Lori the night before

Thanksgiving to check on her, and I suddenly recalled that night back

in ...ummm, spring or summer of 1996, I think... you and Lori made a

conference call to me. I don't remember a thing that we talked about;

I just remember we giggled a lot!

Kim

Mom to (23 with asthma and cf) and (asthma no cf)

HI all,

I am a former member of this group who is returning now. The people

who subscribed early when this list first began may remember me. For

those who don't, I'm , I'm married to (22 yrs!). We have 2

kids, Nick is 20 and doesn't have cf. is 18 wcf. We live in

Placentia CA which is in Orange County, south of LA. was

diagnosed when she was 8 months old due to dehydration and electrolyte

imbalances. She also had a cough and had been losing weight, first

she was dx'ed with failure to thrive, but it didn't take long for the

docs to order a sweat test.

She is doing very well at this time, she hasn't needed to be

hospitalized or do home IV's in over 3 years. That's a record for her

I think. She hasn't even needed any oral antibiotics since March and

she used to be on something practically all the time. She is on tobi

and maybe that is making the difference. I'm not really sure but I am

happy about it!

Anyway I just wanted to let all who already know me that I'm back

and I'm looking forward to getting to know the rest of you. WOW this

list has gotten huge . I guess and Torsten are still

moderators?

I hope to hear any or all:) of you soon.

love,

brmorey@i... (new address in case you have me on an address list)

[Guest guest]

Hey there, welcome back. We missed you!!!

Jen, mommy of 7, 3 with CF (remember me?)

> HI all,

> I am a former member of this group who is returning now. The

people who subscribed early when this list first began may remember

me. For those who don't, I'm , I'm married to (22 yrs!).

We have 2 kids, Nick is 20 and doesn't have cf. is 18 wcf. We

live in Placentia CA which is in Orange County, south of LA.

was diagnosed when she was 8 months old due to dehydration and

electrolyte imbalances. She also had a cough and had been losing

weight, first she was dx'ed with failure to thrive, but it didn't

take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be

hospitalized or do home IV's in over 3 years. That's a record for her

I think. She hasn't even needed any oral antibiotics since March and

she used to be on something practically all the time. She is on tobi

and maybe that is making the difference. I'm not really sure but I

am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back

and I'm looking forward to getting to know the rest of you. WOW this

list has gotten huge . I guess and Torsten are still

moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@i... (new address in case you have me on an address list)

>

>

>

[Guest guest]

Hey there, welcome back. We missed you!!!

Jen, mommy of 7, 3 with CF (remember me?)

> HI all,

> I am a former member of this group who is returning now. The

people who subscribed early when this list first began may remember

me. For those who don't, I'm , I'm married to (22 yrs!).

We have 2 kids, Nick is 20 and doesn't have cf. is 18 wcf. We

live in Placentia CA which is in Orange County, south of LA.

was diagnosed when she was 8 months old due to dehydration and

electrolyte imbalances. She also had a cough and had been losing

weight, first she was dx'ed with failure to thrive, but it didn't

take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be

hospitalized or do home IV's in over 3 years. That's a record for her

I think. She hasn't even needed any oral antibiotics since March and

she used to be on something practically all the time. She is on tobi

and maybe that is making the difference. I'm not really sure but I

am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back

and I'm looking forward to getting to know the rest of you. WOW this

list has gotten huge . I guess and Torsten are still

moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@i... (new address in case you have me on an address list)

>

>

>

[Guest guest]

Hey there, welcome back. We missed you!!!

Jen, mommy of 7, 3 with CF (remember me?)

> HI all,

> I am a former member of this group who is returning now. The

people who subscribed early when this list first began may remember

me. For those who don't, I'm , I'm married to (22 yrs!).

We have 2 kids, Nick is 20 and doesn't have cf. is 18 wcf. We

live in Placentia CA which is in Orange County, south of LA.

was diagnosed when she was 8 months old due to dehydration and

electrolyte imbalances. She also had a cough and had been losing

weight, first she was dx'ed with failure to thrive, but it didn't

take long for the docs to order a sweat test.

>

> She is doing very well at this time, she hasn't needed to be

hospitalized or do home IV's in over 3 years. That's a record for her

I think. She hasn't even needed any oral antibiotics since March and

she used to be on something practically all the time. She is on tobi

and maybe that is making the difference. I'm not really sure but I

am happy about it!

>

> Anyway I just wanted to let all who already know me that I'm back

and I'm looking forward to getting to know the rest of you. WOW this

list has gotten huge . I guess and Torsten are still

moderators?

>

> I hope to hear any or all:) of you soon.

> love,

>

> brmorey@i... (new address in case you have me on an address list)

>

>

>

[Guest guest]

In a message dated 12/3/2002 4:24:25 AM Central Standard Time,

brmorey@... writes:

> She has had 12 or 13 sinus surgeries.

How old is ? My oldest is 10 and so far has only had 2 sinus surgeries.

I am hoping we don't have anymore. Deb A

[Guest guest]

In a message dated 12/3/2002 4:24:25 AM Central Standard Time,

brmorey@... writes:

> She has had 12 or 13 sinus surgeries.

How old is ? My oldest is 10 and so far has only had 2 sinus surgeries.

I am hoping we don't have anymore. Deb A

[Guest guest]

Hi Deb A,

Your email address looks familiar, but I don't really remember you. It's nice to

meet you, thanks for the welcomes. It's not cold here yet but I was almost

tempted to turn on the heat, because it was a little chilly tonight.

More about my family? Are you sure? Well I am pretty much a nutcase and am

on more meds than . The last time she was inpatient I went totally

bonkers, I couldn't even remember a lot of what happened. Since then I've

gotten psych help and antidepressants and I'm doing better. Of course her being

healthy helps ALOT!! As for the most problems she has had has been sinus

problems. She has had 12 or 13 sinus surgeries. I can't even remember anymore,

but the last time was when she was inpatient 3 yrs ago like I said. She's also

had pneumonia 4 or 5 times, about the same amount of bowel obstructions, but she

never had to have surgery for that, she got Golightly by ng tube and was OK. She

also has asthma and GERD, and she had a lot of kidney problems once when she had

been on IV tobramycin for around six weeks. That was the doctors mistake and it

ended up that we changed CF Centers. They told us her kidneys were permanently

damaged and she's have to take pottasium forever but she doesn't. My husband

is basically healthy except for overweight and high blood pressure. He is

dieting and I need to too but can't summon up the willpower right now. And my

son Nick is probably the healthiest person around here, he has asthma but it's

pretty much non existant now. He had it bad when he was around age 3-8, at one

point he was on nebs and cpt like . Nick's a junior at Cal Poly Pomona

majoring in Chemistry and he is doing really great! He's coming home this pm for

winter break so I'll be happy to have both of my kids home!

OK Torsten,

Thanks also and I'm glad to hear is getting along so well. I hope

Fiona is too. I haven't heard from Carol lately. I went for about 6 months not

going online at all so some people may have tried to write but got no response,

I don't know.

Hi Kim,

Nice to see you here. I remember that phone call too, but don't really remember

what we talked about either. Could have been that weird person who used

to be on cystic-l (do you remember her) or maybe it was W.(OH MY GOD) I

haven't talked to Lori in ages, I don't know if she's still mad at me. I think

I did hear from her since we had a falling out, and I don't think she was mad

anymore but we haven't been in touch much at all.

Hi ,

Thanks also for your message. Sounds like you really went through the wringer

with your there when she was diagnosed and all the other problems. I

hope things continue to go well now. BTW, I love that name --That was

's best CF friends name. That died in 1998 at the age of 15. She

had picked up cepacia from either the hospital or CF Camp in 1995 and she'd just

pretty much went downhill from there. We were SO lucky didn't get it, as

had probably had it for quite a while before they finally found it in her

sputum culture, and the two girls had been very close spending lots of time

together and even sleeping over at each others houses.

To n, thanks for the sweet thoughts. I love you too

To Rosemary, Thanks and yes I remember the other 's. I take it they

aren't around anymore? I think there were 4 but one wasn't on this list. I

remember P(eaty?) something like that and she used to push Mannatech or

whatever that stuff is called. And mom of triplets, I don't remember the

kids names except who has CF and some other problems I can't remember.

But that was really sweet.

And Jen of course I remember you! How could I ever forget? I am so glad you're

still on this list. If you have the time (you probably don't but) I'd love to

hear how all your brood is doing. I'll never forget the chia pet disease and all

the fun we had chatting from Canada. Is Mo still around? She was pretty busy

too as I recall.

And Tucker, thanks for the welcomes. I went to your website even before

this, I saw it on cystic-l and checked it out. Your daughter Milan is a very

beautiful little girl! I saw you're trying to get a walk going, I assume for

the Milan Foundation and not the CFF? Where is it that you live? Maybe

and I could come help out in some way? I can't promise as I don't do well in

the morning but I could give it a try. Or if there's something I could do to

help from home?

Oh and thanks for saying I have been popular that's sweet of you.

Well sorry this is so long but I tried not to leave anyone out, if I did I'm

sorry.

thanks again!

love,

[Guest guest]

Deb,

is 18. There for a few years she was having sinus surgery about every 6

months. I'm so glad that is over with though I know she could need it again

sometime. She has tons of nasal allergies and just really crappy sinuses I

guess. But I can't complain, I've always said I was happy it has been mostly

just sinus problems and not lungs.

love,

Re: The return of Morey oh no!!

In a message dated 12/3/2002 4:24:25 AM Central Standard Time,

brmorey@... writes:

> She has had 12 or 13 sinus surgeries.

How old is ? My oldest is 10 and so far has only had 2 sinus surgeries.

I am hoping we don't have anymore. Deb A

[Guest guest]

Deb,

is 18. There for a few years she was having sinus surgery about every 6

months. I'm so glad that is over with though I know she could need it again

sometime. She has tons of nasal allergies and just really crappy sinuses I

guess. But I can't complain, I've always said I was happy it has been mostly

just sinus problems and not lungs.

love,

Re: The return of Morey oh no!!

In a message dated 12/3/2002 4:24:25 AM Central Standard Time,

brmorey@... writes:

> She has had 12 or 13 sinus surgeries.

How old is ? My oldest is 10 and so far has only had 2 sinus surgeries.

I am hoping we don't have anymore. Deb A

[Guest guest]

Deb,

is 18. There for a few years she was having sinus surgery about every 6

months. I'm so glad that is over with though I know she could need it again

sometime. She has tons of nasal allergies and just really crappy sinuses I

guess. But I can't complain, I've always said I was happy it has been mostly

just sinus problems and not lungs.

love,

Re: The return of Morey oh no!!

In a message dated 12/3/2002 4:24:25 AM Central Standard Time,

brmorey@... writes:

> She has had 12 or 13 sinus surgeries.

How old is ? My oldest is 10 and so far has only had 2 sinus surgeries.

I am hoping we don't have anymore. Deb A

[Guest guest]

In a message dated 12/3/2002 10:03:10 AM Central Standard Time,

brmorey@... writes:

> Deb,

> is 18. There for a few years she was having sinus surgery about

> every 6 months. I'm so glad that is over with though I know she could need

> it again sometime. She has tons of nasal allergies and just really crappy

> sinuses I guess. But I can't complain, I've always said I was happy it has

> been mostly just sinus problems and not lungs.

> love,

>

WOW! Every 6 months I thought it was bad when we had it once every 2 years.

Now my oldest is having problems with psuedomonas because they think it is in

her sinuses. Has your daughter ever had this problem? Deb A

[Guest guest]

In a message dated 12/3/2002 10:03:10 AM Central Standard Time,

brmorey@... writes:

> Deb,

> is 18. There for a few years she was having sinus surgery about

> every 6 months. I'm so glad that is over with though I know she could need

> it again sometime. She has tons of nasal allergies and just really crappy

> sinuses I guess. But I can't complain, I've always said I was happy it has

> been mostly just sinus problems and not lungs.

> love,

>

WOW! Every 6 months I thought it was bad when we had it once every 2 years.

Now my oldest is having problems with psuedomonas because they think it is in

her sinuses. Has your daughter ever had this problem? Deb A