RE: hello

[Guest guest]

Tracey,

Welcome. I am sorry to hear of Sydney's diagnosis. My Grand

Daughter will be two years old on December 23rd. Her name is Abby

and she has CF. I know it is tremendously hard to accept this

diagnosis. I cried (sobbed) for 24 hours straight. It's been 20

months since Abby was diagnosed and I still cry sometimes. Mostly

though, I just enjoy her to pieces. She is SO CUTE and SO SMART. I

hope that you find peace with the situation.

Gale

> Hi!

> I'm going to give this another try, I'm not sure it worked the

first time around. Anyways, my daughter, Sydney, is going to be

three in March, and she was diagnosed with CF in May of this year.

My husband was actually deployed during the war when I found out, so

I was sort of handling it myself with help from my family until he

came home. Anyways, I have a bunch of questions concerning CF, but

I'll start out small. We had an appointment yesterday at the CF

Clinic, and found out that Sydney tested positive for psudanomas (non-

mucoid). We started her on TOBI today, and I'm concerned about her

taking it at such a young age. Has anyone else out there had to use

this on their toddlers? If so, did you see an improvement? For the

most part my husband and I are trying to be very positive about

everything, but sometimes its hard. I want her to live a normal

life, but I already find myself sheltering her from a lot. We

recently moved to Virginia, and I haven't returned to work yet for

fear she'll be exposed to way too many viruses at a daycare center.

It seems like we're starting to spiral out of control with our

emotions, any advice on how to get a grip on reality without letting

it bring you down? It feels like we're the only family going through

this. I'm hoping somebody has some words of encouragement out

there! Thanks in advance for any advice you may have for us.

>

> Tracey

>

>

[Guest guest]

Hello Tracey!I'm sorry to hear you had to suffer the initial impact

of the dx of cf woyour husband close by for support, it must

havebeen

hard on both of you.The good news is theres a lot of good people out

there like those on this list to give you their insight when

needed.My son Tyler will be 9 in March.He was a little over 3 when

dx wcf and put on Tobi right away.They took him off the 28 day

on/off schedule and he started w/the darned cough again so they

tried a more permanent cycle(28on/off).I think its worked like a

charm.He is on home iv antibiotics right now(he just had surgery, no

good for the lungs) after a 5 day admission.This was his 1st tuneup

ever and i believe if it wasn't for the surgery he probably wouldn't

have needed it.My son used the mask then and now, it seems to be the

only way to assure me he's getting all the meds properly.I know

there is talk of prolonged use of Tobi and I'm not real familiar

with those.At this point I'm so glad to have treatments that keep

him healthy I haven't been to concerned w/the side effects.Good luck

to you.Keep us posted.

Patty, mom to Ty 8wcf and 2wocf...in the (no)sunshine state!!!:)

> Hi!

> I'm going to give this another try, I'm not sure it worked the

first time around. Anyways, my daughter, Sydney, is going to be

three in March, and she was diagnosed with CF in May of this year.

My husband was actually deployed during the war when I found out, so

I was sort of handling it myself with help from my family until he

came home. Anyways, I have a bunch of questions concerning CF, but

I'll start out small. We had an appointment yesterday at the CF

Clinic, and found out that Sydney tested positive for psudanomas

(non-mucoid). We started her on TOBI today, and I'm concerned about

her taking it at such a young age. Has anyone else out there had to

use this on their toddlers? If so, did you see an improvement? For

the most part my husband and I are trying to be very positive about

everything, but sometimes its hard. I want her to live a normal

life, but I already find myself sheltering her from a lot. We

recently moved to Virginia, and I haven't returned to work yet for

fear she'll be exposed to way too many viruses at a daycare center.

It seems like we're starting to spiral out of control with our

emotions, any advice on how to get a grip on reality without letting

it bring you down? It feels like we're the only family going

through this. I'm hoping somebody has some words of encouragement

out there! Thanks in advance for any advice you may have for us.

>

> Tracey

>

>

[Guest guest]

I will check today.You'll hear soon or receive. Lois said she thought 4

bubbles were coming to you.. I will check .

Thanks

LOVE & HUGS, grandmomBEV

Re: Hello

In a message dated 12/9/2003 9:05:07 PM Central Standard Time, bevd@...

writes:

Hey Deb,

did they get you what you wanted with the masks? let me know if they haven't

.. They should have by now.........I have been doing reports & plans &

haven't been down in Rx this week to check . whatever you need , let me

know

LOVE & HUGS, grandmoMBEV

Ya I think so. I haven't heard anything today but they were having a hard

time with my insurance trying to figure out how to bill it. Also she said

they do

not bill to the state? our oldest is on a waive program and for

some

reason they didn't think they could bill it. Thanks for asking!! I hope we

get them soon. Deb A

[Guest guest]

In a message dated 12/10/2003 5:10:55 AM Central Standard Time, bevd@...

writes:

I will check today.You'll hear soon or receive. Lois said she thought 4

bubbles were coming to you.. I will check .

Thanks

LOVE & HUGS, grandmomBEV

Ya she said we should have 4 so we can keep them washed. I did talk to Carol

today and she did get our insurance straighten out but was still not sure

about the state program she is on. Thanks for all of you help!!! Deb A

[Guest guest]

Welcome Tracey! You have just found the way to keep your emotions from taking

that long negative plunge...talking with people who really understand. :-) It

is great that you are staying at home with your child. If your family finances

can handle it you might really consider continuing to do so.

Something you and your husband need to give yourself the freedom to do is

grieve. There is a loss of life at diagnosis...the life you thought you were

going to have. If you allow yourself to go through the grieving process you

will come out healthier on the other side.

love,

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Hi TRacy,

My son Cody was 9 months old when he cultured PA and he did great on Tobi, with

no complications

Cody wCF 21 months

Hello

Hi!

I'm going to give this another try, I'm not sure it worked the first time

around. Anyways, my daughter, Sydney, is going to be three in March, and she

was diagnosed with CF in May of this year. My husband was actually deployed

during the war when I found out, so I was sort of handling it myself with help

from my family until he came home. Anyways, I have a bunch of questions

concerning CF, but I'll start out small. We had an appointment yesterday at

the CF Clinic, and found out that Sydney tested positive for psudanomas

(non-mucoid). We started her on TOBI today, and I'm concerned about her taking

it at such a young age. Has anyone else out there had to use this on their

toddlers? If so, did you see an improvement? For the most part my husband and

I are trying to be very positive about everything, but sometimes its hard. I

want her to live a normal life, but I already find myself sheltering her from a

lot. We recently moved to Virginia, and I haven't returned to work yet for fear

she'll be exposed to way too many viruses at a daycare center. It seems like

we're starting to spiral out of control with our emotions, any advice on how to

get a grip on reality without letting it bring you down? It feels like we're

the only family going through this. I'm hoping somebody has some words of

encouragement out there! Thanks in advance for any advice you may have for us.

Tracey

[Guest guest]

Thanks for the info concerning the TOBI. The pharmacist that gave me the

prescription acted like it's a lot for a 2-1/2 year old, so that kind of freaked

me out, but when I told him she had CF he seemed to understand a little more.

Anyways, you said about having her blood levels monitored. I was just gettting

ready to call our doc. and ask if they plan on doing that for Sydney, but before

I call, I want to understand what it is that they're looking for when they're

monitoring her blood levels. You said that your daughter's levels were high,

but what is it that registers high? I don't want to sound like an idiot when I

call the doctor, so any help that you can give is GREATLY APPRECIATED! Thanks

for the tips!

Tracey

Hello

Hi!

I'm going to give this another try, I'm not sure it worked the first time

around. Anyways, my daughter, Sydney, is going to be three in March, and she

was diagnosed with CF in May of this year. My husband was actually deployed

during the war when I found out, so I was sort of handling it myself with help

from my family until he came home. Anyways, I have a bunch of questions

concerning CF, but I'll start out small. We had an appointment yesterday at

the CF Clinic, and found out that Sydney tested positive for psudanomas

(non-mucoid). We started her on TOBI today, and I'm concerned about her taking

it at such a young age. Has anyone else out there had to use this on their

toddlers? If so, did you see an improvement? For the most part my husband and

I are trying to be very positive about everything, but sometimes its hard. I

want her to live a normal life, but I already find myself sheltering her from a

lot. We recently moved to Virginia, and I haven't returned to work yet for fear

she'll be exposed to way too many viruses at a daycare center. It seems like

we're starting to spiral out of control with our emotions, any advice on how to

get a grip on reality without letting it bring you down? It feels like we're

the only family going through this. I'm hoping somebody has some words of

encouragement out there! Thanks in advance for any advice you may have for us.

Tracey

[Guest guest]

HI Tracey!

You are not the only ones going through this, there are (I think) around 700

families worldwide on this list who are (or have been) through it all. My

daughter wcf is 19 and we went through all the toddler issues. She was diagnosed

at 8 months due to dehydration, cough, failure to thrive and electrolyte

imbalance. I didn't work (still don't, due to other issues) but she was exposed

to lots of other kids, I was involved with a playgroup and baby sitting co-op.

She also went to preschool at Head Start. She got lots of colds but never got

" hospital sick " until age 9.

About your question on using Tobi for toddlers, obviously we didn't have Tobi

when was a toddler but I have heard several families on here who have had

their docs run blood tests for their young kids on Tobi and some found they

needed 1/2 dosage. You'll probably hear more on that from other people.

I hope you feel encouraged, my daughter is going strong and in college. She

recently had a " tune-up " (what we call going on IV antibiotics either in

hospital or home IV's) but it had been almost 4 years since her last tune-up.

She does pretty well and we recently found out her mutations, (One is very rare)

and that she does not need enzymes. It seemed she did need them while growing up

but (I don't know why) now she doesn't. Whatever the reason is I am glad of

it, as is she.

Welcome to the list and I hope you get your answers here and feel free to vent

your fears and anything. It must be hard having your husband away.

love,

Mom of age 19 wcf and Nick age 21 nocf

[Guest guest]

Sorry to hear Eilish isn't getting any better...good luck at the

hospital tomorrow!! Absolutely love cuddling babies and giving them

back these days, lol!

Barbara

Mum to Kristy 13 wcf and Nicky 16 wocf

Australia

still

> Hope you all had a merry Christmas. We had a nice time here. The

kids

> got spoilt rotten. Liam said to me that he was the luckiest boy

in the

> world. Which I thought was nice of him to realise it.

> Had to call the hsp. today as Eilish isn't getting any better.

They

> want to see her on Monday. Although the Cf clinic is closed till

5th

> Jan. They can see emergencies in the rooms. So I'll call them

Monday to

> see what time they can fit us in.

>

> TERRI- Have you left to come to SA yet? Looking forward to seeing

you

> in person.

>

> Saw my 3 day old nephew yesterday, he is huge. He was 57cm when

born

> and 10pounds and all that is in his multiple chins and cheeks. It

has

> been lovely cuddling two 4 weeks and 3 days babies. But when they

tell

> me they have had no sleep its nice to give them back as well.

>

> (Australia)

>

>

>

>

[Guest guest]

Kristy,

Hi and welcome to the group. I wish you luck in your journey in obtaining

good health. Keep us posted and don't be afraid to ask any questions you might

have.

Laurette

4/23/04 open rny

309/290/244/150

St. Charity

Cleveland, Ohio

[Guest guest]

Maggie,

Good luck to you on your surgery, I will keep you in my thoughts and

prayers. Think positive thoughts and keep your chin up. YOU WILL SUCCEED!!!!!

Laurette

4/23/03 open rny

309/290/234/150

St. Charity

Cleveland, Ohio

[Guest guest]

Hi Maggie,

I totally understand the emotions. Just keep the faith...its

helping me! I go in tomorrow 6am and surprisingly right now I am

calm...even with Frances on our doorstep! Sending lots of prayers!!

Big hugs, in AL.

[Guest guest]

Most surgeons keep track of these things and you should look into

www.obesityhelp.com. They have statistics and testimonials from both

sides of the aisle.

Who is the surgeon you are thinking about seeing, call his office and

ask for his statistics.

> Hi ,

> Welcome to the group. I am not sure how many are long term but if

> they are they will certainly speak up. I am just out 11 day's from

> my surgery so I couldn't help you much.

> Hugs, in AL.

>

[Guest guest]

Hello ,

You could definately try obesity help, I think they have a long term

forum. There is also the big celebrity for WLS, Carnie . I was

reading her story the other day about being pregnant and she had her

surgery back in 1999. It has been 5 years already!! I cannot believe

it. I don't know if they still have her story or not but I used to

read about her on spotlighthealth.com. You could try it out. I know

she did like a month to month review of things going on with her.

She is no longer affiliated with them but I think all her info is

still there. Good luck to you!!

Tina

open rny 7-6-04

319/259/159

> Hello all,

>

> I am new to the list. In the process of considering the surgical

option I was trying to find any medical research that follows the

surgery results on the long run. (5 years or more. That seems to

be the threshold for cancer survivals). I can not find any such long

term research. Why it is not done, I do not know, but it is just

not done. Why some doctors/institutions not considering it

essential and pushing for such research, I can not understand.

>

> In the alternative, I am trying to find people who had any of the

surgical procedures done quite a long time ago. I would like to

find some people who had the operation prior to January 2000 who are

willing to share their experience - good or bad.

>

> If anyone is such a person or knows of such person, please let me

know. Thank you so much.

>

>

>

>

[Guest guest]

So where are you from? It's nice to here from someone who has experience with

RSS, but I have not heard of any of the problems you are having to deal with. My

daughter is 5 she weighs 30 lbs. she has a hard time keeping in nutrients, it

seems that when she eats it just runs right through her. There are times when

she has to go to the bathroom even before she done with dinner. Any nice to here

from you.

/mom of Tori 5 RSS and 2 nonrss NY

hello

Hi, I just happened to stumble across this group> my name is Leah, I

am 22 and I was born with silver russel syndrome. I've had a few

questions that no one seems able to answer. I have a few things that

are odd about me and i'm not sure if they're related to the SRS

because there is so little knowledge of the disorder. I was born

without a uterus, ribs over my heart and without one of my kidneys.

the other thing is i used to have chronic ear infections and i have

bell's palsey. If anyone knows anything about any of these things

please write back and well...even if you don't : ) have a good day

*leah*

[Guest guest]

,

Thanks for the tip about BB & B. I'll be heading there ASAP!

Have a great day,

Carol

> > > Hey My name is Devyn and I'm a 20 year old male from Tampa FL.

I

> had

> > my

> > > operation on may 11th 2005 on my upper and lower jaw. I'm in my

> > first

> > > week of recovery and I feel great other than mild pain around

my

> > chin

> > > and nose area. My right side is slightly larger than my left,

> I've

> > been

> > > trying to even them out with ice.

> > >

> > > I have a question about the knumbness under my right eye

mostly,

> how

> > > will it take for the feeling to come back completely?

[Guest guest]

Carol

The one that I got is long and skinny, so I can wrap it around my

entire head. It is great.

> > > > Hey My name is Devyn and I'm a 20 year old male from Tampa

FL.

> I

> > had

> > > my

> > > > operation on may 11th 2005 on my upper and lower jaw. I'm in

my

> > > first

> > > > week of recovery and I feel great other than mild pain

around

> my

> > > chin

> > > > and nose area. My right side is slightly larger than my

left,

> > I've

> > > been

> > > > trying to even them out with ice.

> > > >

> > > > I have a question about the knumbness under my right eye

> mostly,

> > how

> > > > will it take for the feeling to come back completely?

[Guest guest]

,

I think I'm going shopping tomorrow morning!

Thanks again,

Carol

> > > > Where can you buy this rice filled cloth bag and can it be

> reused

> > > for a few weeks?

> > > > Thanks,

> > > > Steve

[Guest guest]

Hi there Anne, I am not too far off from you, i live in Bromley, kent.

Hang in there Anne, 26 days post op, when are your elastics due out,

do yo know? Must be soon?

B

> Hello my name is Ann I am 44 and 26 days post op after having both

my

> top and bottom jaw done.

> I live in the uk in Chessington Surrey.

> At the moment I am off fluids and on toddler food! Yesterday I tried

> to chew but as my bottlom jaw is still numb this is not easy.

> The feeling is starting to come back but more as intense irritating

> discomfort. I can open my mouth 1 finger maionly because of the

> elastics keeping it shut. Really irritating.

> Is there anyone slse living near me?

> Ann

[Guest guest]

check out the "coalition for pulmonary fibrosis"

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: helloTo: Breathe-Support Date: Thursday, November 19, 2009, 11:52 AM

how do you find out about all day seminars?

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 11:48:40 AMSubject: Re: Re: hello

Beth was diagnosed at a center in New York

Mt Sinai is a center that i went to when the the coalition for pulmonary fibrosis had an all day seminar

for all of the newbies

signature frequently includes diagnosis with date, where you live and anything else you want to share

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: helloTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 19, 2009, 11:36 AM

Hi ,My name is Dyane and I was new to the group back in February even though I was diagnosed (somewhat) in 2002. I know you are scared because the first thing anybody does is search the internet and you see 2-5 years. Stop right there. Many on the board have had this longer, some much longer. Get to a center of Excellence if you can. Many local pulmo-dudes do not understand PF. I just came back from National Jewish in Denver and I found out a lot of of new things even after almost 8 years. One of the most important things is how everyone here "gets" it. We understand unlike a lot of people who can't 'see' your disease. Beth was a nurse, Bruce is an encyclopedia of information, Mama Sher, Peggy, , Geeta, Joyce and Pink Joyce, Stefani, Barbara, Cees and all the others whose names have run out the hole in my head, will love you,

listen to your woes, and give the best advice they can. WelcomeDyane Phoenix ipf 02>> Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> >

[Guest guest]

How do you add yaou signature and dx date?

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 19, 2009 11:48:40 AMSubject: Re: Re: hello

Beth was diagnosed at a center in New York

Mt Sinai is a center that i went to when the the coalition for pulmonary fibrosis had an all day seminar

for all of the newbies

signature frequently includes diagnosis with date, where you live and anything else you want to share

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: helloTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 19, 2009, 11:36 AM

Hi ,My name is Dyane and I was new to the group back in February even though I was diagnosed (somewhat) in 2002. I know you are scared because the first thing anybody does is search the internet and you see 2-5 years. Stop right there. Many on the board have had this longer, some much longer. Get to a center of Excellence if you can. Many local pulmo-dudes do not understand PF. I just came back from National Jewish in Denver and I found out a lot of of new things even after almost 8 years. One of the most important things is how everyone here "gets" it. We understand unlike a lot of people who can't 'see' your disease. Beth was a nurse, Bruce is an encyclopedia of information, Mama Sher, Peggy, , Geeta, Joyce and Pink Joyce, Stefani, Barbara, Cees and all the others whose names have run out the hole in my head, will love you,

listen to your woes, and give the best advice they can. WelcomeDyane Phoenix ipf 02>> Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> >

[Guest guest]

john

in yahoo mail there is a button for options on the top right side

hit the button and in there is a place for thesignature

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: helloTo: Breathe-Support Date: Thursday, November 19, 2009, 3:54 PM

How do you add yaou signature and dx date?

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 11:48:40 AMSubject: Re: Re: hello

Beth was diagnosed at a center in New York

Mt Sinai is a center that i went to when the the coalition for pulmonary fibrosis had an all day seminar

for all of the newbies

signature frequently includes diagnosis with date, where you live and anything else you want to share

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: helloTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 19, 2009, 11:36 AM

Hi ,My name is Dyane and I was new to the group back in February even though I was diagnosed (somewhat) in 2002. I know you are scared because the first thing anybody does is search the internet and you see 2-5 years. Stop right there. Many on the board have had this longer, some much longer. Get to a center of Excellence if you can. Many local pulmo-dudes do not understand PF. I just came back from National Jewish in Denver and I found out a lot of of new things even after almost 8 years. One of the most important things is how everyone here "gets" it. We understand unlike a lot of people who can't 'see' your disease. Beth was a nurse, Bruce is an encyclopedia of information, Mama Sher, Peggy, , Geeta, Joyce and Pink Joyce, Stefani, Barbara, Cees and all the others whose names have run out the hole in my head, will love you,

listen to your woes, and give the best advice they can. WelcomeDyane Phoenix ipf 02>> Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> >

[Guest guest]

OH cool thanks Joyse

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 19, 2009 4:00:15 PMSubject: Re: Re: hello

john

in yahoo mail there is a button for options on the top right side

hit the button and in there is a place for thesignature

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: helloTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 19, 2009, 11:36 AM

Hi ,My name is Dyane and I was new to the group back in February even though I was diagnosed (somewhat) in 2002. I know you are scared because the first thing anybody does is search the internet and you see 2-5 years. Stop right there. Many on the board have had this longer, some much longer. Get to a center of Excellence if you can. Many local pulmo-dudes do not understand PF. I just came back from National Jewish in Denver and I found out a lot of of new things even after almost 8 years. One of the most important things is how everyone here "gets" it. We understand unlike a lot of people who can't 'see' your disease. Beth was a nurse, Bruce is an encyclopedia of information, Mama Sher, Peggy, , Geeta, Joyce and Pink Joyce, Stefani, Barbara, Cees and all the others whose names have run out the hole in my head, will love you,

listen to your woes, and give the best advice they can. WelcomeDyane Phoenix ipf 02>> Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> >