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> In a message dated 9/6/2000 10:55:56 PM Eastern Daylight Time,

> katherin@... writes:

>

> I was wondering how

> the experience has gone for those patients who live outside NC? I'd

> like to hear from anyone who has had problems once they have returned

> home. Thanks

Hello...

I had the MGB on August 10 and traveled by plane from Illinois. I've had no

problems

whatsoever. I was concerned about nausea while flying, because I've always had

a

problem with it, even after taking Dramamine. I wore the patch for the flight

to and

from Durham. [The patch (Transderm Scop) is prescribed for the surgery] I had

NO

nausea and our flights were not smooth as far as turbulence goes.

I know you were looking for responses from people who HAVE had problems, but

decided

to respond anyway! :)

Tricia in IL

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  • 2 weeks later...

In a message dated 9/22/2000 8:35:42 AM Eastern Daylight Time,

Lecruella@... writes:

<< Joyce >>

Welcome to the group Joyce!!

Cathy Morrow in Lenoir, NC

BMI 42

A journey of a thousand miles begins with a single step

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  • 1 year later...
  • 3 months later...

DC

Sorry to hear that your younger sister has RP. There are a few who have tried the natural treatments but don't know how they have done. Most of us have had to resort to the meds to keep us under control.

Please feel free to post and ask questions that is what we are here for. Don't always know the answers but will help you find them.

Lots of love

Glenda

I am a new member whose younger sister was just diagnosed withPolychondritis. She's had a few flare ups in her ears so far, but nothing major yet. Does anyone have advice or knowledge about natural treatments or supplements that help regulate the immune system? From what I've read, this is considered an auto-immune disease. Does regular exercise and good nutrition help? Luckily, my sister doesn't have to work and can rest at home when she needs to. Is Pc related to stress? Thanks. DC

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  • 1 year later...

Val,

Welcome to the group! This is such a great place to come for questions and

support.

mom of Jaelyn 21 months w/cf and Makenzie 6 w/o cf.

New member

I have been reading the e-mails from this board for a while but just

now I have time to introduce myself. I am the mum of a 10 months old

boy with CF, his name is torin. I am from Brazil and my husband from

USA and we met at the internet, ICQ, 3 years ago. Such odd situation

to find the love of my life...I would never thought about us being

the carrier of some genetic mutation. But I belive that fate put as

together and fate gave us our wonderful and spoiled baby. we live in

GA, and I have no family or friends here. I miss my family a lot and

I had no idea how to take care of a baby...and a baby w/cf is sorta

a chalanger to me. I needed to quit my job coz we decide to wait

till torin is 2 years old to put him at day care.

Torin had meconiun ileus ( I have no idea how to write it), and went

to surgery 6 hours after birth. after the surgery was the first time

in my life I heard about CF. But the next day they were not thinking

it was cf...well, it took them almost 2 months to confirm the Dx,

firt they did 1 sweat test ( 65) and them 3 genetic test , believe

or not they lost the firt 2. then they called a GI Doc, wonderful

person and the first one in that nicu to do something to really help

my son. we left the nicu when my baby was 43 days. and no one really

explain to us what cf was...I got in the internet to learn, get

scared...8 months later...I know a little bit about cf ...and about

how to take care of my baby...everything is so new..to nurse him, to

feed him, neb him, medication, etc.......we are luck he've had no

real problem since we left the hospital and is such a happy ,

spoiled child.

well..be ready to listen from me...I have so many doubts...

see u soon

:)

val ( mom of Torin 10 m with cf and 1 tooth)

ps: I am sorry about my english...hope you all are able to

understand me

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  • 2 years later...

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