Introduction

[Guest guest]

Welcome aboard, Crissy. This is a great bunch of people!

--

Kind regards,

EMAIL: lindat@...

Webpage: http://www.fourlane.com/lindat

***

Call L. A. Ventures for online solutions!

http://www.fourlane.com/laventures

Crissy Wagner wrote:

>

> Hello everyone,

>

> I just wanted to introduce myself to

> everyone. I am Cristy. 26/f/Wi. I am a writer.

> I am married to the most wonderful man in the

> world who fully supports my decison to have this

> surgery. He knows as well as my mom that this

> surgery is going to save my life, and return

> " Cristy " back to Cristy. It has been so long

> since I have been my self. I have been obese my

> entire life. And like many

> if not all of you have tried everything

> imaginable to loose this weight. At 5'9

> and 335 lbs life is miserable. I have many

> co morbidites including Type II Diabetes,

> joint, back and knee pain, irregular periods,

> infertility, acid reflux etc. I have a

> family history of stroke, hyper tension, heart

> disease and cancer. After being repeatdly denied

> by my insurance company here in Wisconsin because

> of an exclusion in our policy, I have decided

> to find a great suregon that will offer self pay.

> Hence me finding Dr.Rutledge, and have been reading

> everything I can about him and the mini GB.

> I am now convinced he is a great person as well as

> a suregon and am very excited to get the ball rolling

> to become a " looser " . This decision was made three years

> ago to have this procedure, but with my insurance

> nightmare I thought it would NEVER be possible for me

> to have this done. Any information you could provide me

> about The mini gb and Dr.Rutledge would be greatly apprecaited!

> Also does anyone have information about hotels close to the

> hospital, how long you were in if you have all ready had this,

> and if you are a self pay, how much did this cost total.

> Thank you in advance for your thoughts, and information.

> Sorry this is so long.......

>

> Cristy

> Wisconsin

> 5'9 335

> BMI 50

>

> ~It is easy to be ordinary, the challenge is to be different~

>

> ----------------------------------------------------------------------

>

> ----------------------------------------------------------------------

> This message is from the Mini-Gastric Bypass Mailing List at

> Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

[Guest guest]

Welcome aboard, Crissy. This is a great bunch of people!

--

Kind regards,

EMAIL: lindat@...

Webpage: http://www.fourlane.com/lindat

***

Call L. A. Ventures for online solutions!

http://www.fourlane.com/laventures

Crissy Wagner wrote:

>

> Hello everyone,

>

> I just wanted to introduce myself to

> everyone. I am Cristy. 26/f/Wi. I am a writer.

> I am married to the most wonderful man in the

> world who fully supports my decison to have this

> surgery. He knows as well as my mom that this

> surgery is going to save my life, and return

> " Cristy " back to Cristy. It has been so long

> since I have been my self. I have been obese my

> entire life. And like many

> if not all of you have tried everything

> imaginable to loose this weight. At 5'9

> and 335 lbs life is miserable. I have many

> co morbidites including Type II Diabetes,

> joint, back and knee pain, irregular periods,

> infertility, acid reflux etc. I have a

> family history of stroke, hyper tension, heart

> disease and cancer. After being repeatdly denied

> by my insurance company here in Wisconsin because

> of an exclusion in our policy, I have decided

> to find a great suregon that will offer self pay.

> Hence me finding Dr.Rutledge, and have been reading

> everything I can about him and the mini GB.

> I am now convinced he is a great person as well as

> a suregon and am very excited to get the ball rolling

> to become a " looser " . This decision was made three years

> ago to have this procedure, but with my insurance

> nightmare I thought it would NEVER be possible for me

> to have this done. Any information you could provide me

> about The mini gb and Dr.Rutledge would be greatly apprecaited!

> Also does anyone have information about hotels close to the

> hospital, how long you were in if you have all ready had this,

> and if you are a self pay, how much did this cost total.

> Thank you in advance for your thoughts, and information.

> Sorry this is so long.......

>

> Cristy

> Wisconsin

> 5'9 335

> BMI 50

>

> ~It is easy to be ordinary, the challenge is to be different~

>

> ----------------------------------------------------------------------

>

> ----------------------------------------------------------------------

> This message is from the Mini-Gastric Bypass Mailing List at

> Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

[Guest guest]

Welcome aboard, Crissy. This is a great bunch of people!

--

Kind regards,

EMAIL: lindat@...

Webpage: http://www.fourlane.com/lindat

***

Call L. A. Ventures for online solutions!

http://www.fourlane.com/laventures

Crissy Wagner wrote:

>

> Hello everyone,

>

> I just wanted to introduce myself to

> everyone. I am Cristy. 26/f/Wi. I am a writer.

> I am married to the most wonderful man in the

> world who fully supports my decison to have this

> surgery. He knows as well as my mom that this

> surgery is going to save my life, and return

> " Cristy " back to Cristy. It has been so long

> since I have been my self. I have been obese my

> entire life. And like many

> if not all of you have tried everything

> imaginable to loose this weight. At 5'9

> and 335 lbs life is miserable. I have many

> co morbidites including Type II Diabetes,

> joint, back and knee pain, irregular periods,

> infertility, acid reflux etc. I have a

> family history of stroke, hyper tension, heart

> disease and cancer. After being repeatdly denied

> by my insurance company here in Wisconsin because

> of an exclusion in our policy, I have decided

> to find a great suregon that will offer self pay.

> Hence me finding Dr.Rutledge, and have been reading

> everything I can about him and the mini GB.

> I am now convinced he is a great person as well as

> a suregon and am very excited to get the ball rolling

> to become a " looser " . This decision was made three years

> ago to have this procedure, but with my insurance

> nightmare I thought it would NEVER be possible for me

> to have this done. Any information you could provide me

> about The mini gb and Dr.Rutledge would be greatly apprecaited!

> Also does anyone have information about hotels close to the

> hospital, how long you were in if you have all ready had this,

> and if you are a self pay, how much did this cost total.

> Thank you in advance for your thoughts, and information.

> Sorry this is so long.......

>

> Cristy

> Wisconsin

> 5'9 335

> BMI 50

>

> ~It is easy to be ordinary, the challenge is to be different~

>

> ----------------------------------------------------------------------

>

> ----------------------------------------------------------------------

> This message is from the Mini-Gastric Bypass Mailing List at

> Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

[Guest guest]

Welcome ,

So that means that you have CF also right? If they didn't get a gene from you

husband that means you have two genes right? Deb mom of with/CF and

Lynzie wo/CF and Natalynn with/CF

[Guest guest]

Hi Deb! No, I don't have CF. I am just a carrier of DF508. That's why it's

so strange that Max HAS CF. My husband has been tested twice & is negative

both times, & since Max is a double DF508, the only possibility is that he

got it from me. Uni-parental disomy means that he somehow got 2 of my

mutated #7's. I asked the geneticist " WHY? " & he said, " Why NOT? " He says

these things just happen, like some people are born w/other abnormalities or

down syndrome, it just happens. I guess my genes are very dominating, huh?!

Ha ha! I guess you would call it " untraditional inheritance " .

~

[Guest guest]

We got tested prenatally. This is standard at my OB/GYN. I came back as a

carrier hubby's came back negative. We were told there was basically no

chance we'd have a child w/CF because of this..........well, low & behold!

So, that's why we had hubby re-tested. We thought the first must've been

wrong. Once we heard that there could be additional health risks if he did

actually get both from me, we had to see a geneticist. From what I know, the

only additional health risk might be short stature, since he is missing 1 of

my husband's genes. Although, my husband is 6'4 " so I'm sure he won't be too

short. The Dr also pointed out something about his pinkie fingers. They are

thick at the bottom but come to a point at the end. I thought it looked

completely normal but he says that is a common trait of people receiving

duplicate copies of a gene from 1 parent. I can see everyone now, running to

check out their kids' fingers!!!!!!!

~

[Guest guest]

,

Maybe your husband has a gene that is not detected yet they are always

finding unknown genes of Cf. Does he have two of the same gene? Deb

[Guest guest]

Ya I was wondering the same thing we were never tested either we just assume

we are both carriers. They have never tested us for sure either. Deb

[Guest guest]

Hi !

Thanks for your introduction. I, personally, find you

genetics extremely interesting. Please keep us updated on

the final results whenever they come.

The only way I get to tell people to keep their hands with

themselves is to remind them that they have not washed them.

I have made the experience that - when not watched - people

just do NOT wash their hands after being to the toilet (or

anywhere else). When we have visitors - especially children

- the first thing they have to do is go and wash their

fingers. They have got used to it. The grown-ups are

familiar with our problem - but I cannot " send " them to wash

their hands like I would do it with a child.

, there is no non-offensive way of telling people

they are not " clean " enough to touch your child. And it is

none of their business if YOU think they are a dirt-bag - as

long as they are... It is your child and it is your job to

take care. So it is no problem to tell them to keep their

fingers off.

I hope you understand what I am trying to say.

Have a nice weekend

Caroline

With 6 CF

and Talau 10 no CF

Patchouli55@... schrieb:

>

> Hello everyone! I've been lurking for a while. My name

> is & I have

> 2 boys, a 6 year old (Hunter no/CF) & an 11 month old (Max

> w/CF). Max was

> finally diagnosed when he was 8 months old. He had a

> rough first year, lots

> of respiratory wheezing & coughing resulting in 4

> hospitalizations. The Drs.

> were all in denial about the possibility of CF because

> he's always been very

> big. He's 23.5 lb. now! He's a piggy-which I hope

> continues! Anyhow,

> some of you may be familiar w/our story from cystic-l, my

> son is somewhat of

> a miracle......he is a double DF508 but my husband is NOT

> a carrier! (Hunter

> & I are both carriers.) My husband is definitely the

> father!!! So no

> comments there We have seen the geneticist & he

> believes that Max has

> Uni-parental disomy 7. Which means he got BOTH gene 7's

> from me. He only

> knows of 1 other case so apparently it's pretty rare. We

> are going to have

> the official genetic mapping done on the 3 of us to know

> for sure. I just

> thought some of you might find our story

> interesting.........anyway, about

> the strangers touching thing, does anyone have any

> " non-offensive " ways to

> tell people not to touch your child? I find it to be so

> uncomfortable. I

> always feel like they must think that I think they are a

> dirt-bag or

> something! There's no way Max would keep the " hand "

> attached to him. He

> won't even wear a sticker!

> Thanks!

>

>

>

[Guest guest]

,

That is so interesting about the fingers. I have never heard of that before.

Thanks for the info. Deb

[Guest guest]

Why did you and your husband get tested? Once we found out was double

DF508, we figured what's the point of getting tested. I'm just curious if

this is common...for the parents to get tested. Now, my mother and brothers

are getting tested so we can tell the relevant parts of the family. If my

mom is positive, she'll have my dad go in for testing to make sure he isn't

also a carrier. But if she's negative, we'll just assume my dad is the

carrier.

Just like we are assuming that my husband and I are both carriers. Hm. Not

necessarily true!

Very enlightening...thanks for sharing, .

> From: Patchouli55@...

>

> Hi Deb! No, I don't have CF. I am just a carrier of DF508. That's why it's

> so strange that Max HAS CF. My husband has been tested twice & is negative

> both times, & since Max is a double DF508, the only possibility is that he

> got it from me. Uni-parental disomy means that he somehow got 2 of my

> mutated #7's. I asked the geneticist " WHY? " & he said, " Why NOT? " He says

> these things just happen, like some people are born w/other abnormalities or

> down syndrome, it just happens. I guess my genes are very dominating, huh?!

> Ha ha! I guess you would call it " untraditional inheritance " .

> ~

>

[Guest guest]

HI

Welcome to the group. You'll find great support here.

Interesting, I'll say. You must have all the Dr's and gene-cists spinning in

circles . lol

This seems so fascinating . I'd love the update on what the Dr's come to a

conclusion on.

Isn't it so that as a carrier we have one good and 1 bad CF gene? I try to stay

away from this aspect of the disease because it can get complicated. But I know

the jist of it.

My son is also DF508.

As for the hand thing, it works for us, but I can see how most kids would try to

rip it off, as was our case for quite a few weeks. He even tore a hole in one of

his shirts trying to rip it off, but like with most things in his life he sees

it as normal.

My other thought to you is another approach I use. I carry atleast 4-5 small

bottles of waterless hand sanitizer in my purse,pockets,diaper-bag ect..(you'll

never catch me without it) ...If a family member or friend is approaching Josh I

thrust a bottle in their face and kindly ask them to squirt a drop in their

hands. They do so without questions .

But for those pesky long armed stick fingered strangers, I just walk away, spin

around or quicky get them out of our path. Hey I learned that trying to be nice

to strangers about touching my child does not work, because by the time you are

asking them no to touch they already are. SO make a quick get-a-way! (if the

opportunity presents it's self) ..All in all I think you will come-up with your

own tactful way of dealing with the issue at hand.

P.s That's great on Max's weight! I have a piglet too

Take Care,

Stein.....mom to CF (15 mo) & Tori wo/CF (4 yr)

introduction

Hello everyone! I've been lurking for a while. My name is & I have

2 boys, a 6 year old (Hunter no/CF) & an 11 month old (Max w/CF). Max was

finally diagnosed when he was 8 months old. He had a rough first year, lots

of respiratory wheezing & coughing resulting in 4 hospitalizations. The Drs.

were all in denial about the possibility of CF because he's always been very

big. He's 23.5 lb. now! He's a piggy-which I hope continues! Anyhow,

some of you may be familiar w/our story from cystic-l, my son is somewhat of

a miracle......he is a double DF508 but my husband is NOT a carrier! (Hunter

& I are both carriers.) My husband is definitely the father!!! So no

comments there We have seen the geneticist & he believes that Max has

Uni-parental disomy 7. Which means he got BOTH gene 7's from me. He only

knows of 1 other case so apparently it's pretty rare. We are going to have

the official genetic mapping done on the 3 of us to know for sure. I just

thought some of you might find our story interesting.........anyway, about

the strangers touching thing, does anyone have any " non-offensive " ways to

tell people not to touch your child? I find it to be so uncomfortable. I

always feel like they must think that I think they are a dirt-bag or

something! There's no way Max would keep the " hand " attached to him. He

won't even wear a sticker!

Thanks!

[Guest guest]

Wow, that is very interesting. Those geneticists are an interesting

bunch themselves. We had a weird (unrelated) scare when was 2 months

old and tested positive for carrying a gene for galactosemia (well, I would

take galactosemia carrier over CF'er any day! LOL!). Some people who are

carriers have mild forms of the disease in this case; we thought that

explained his digestive problems. Anyway, the geneticist did an exam and

asked us questions...the exam was so weird, he was looking at such weird

things, like inspecting each finger thoroughly, his earlobes, etc, and

asking us such odd questions! It was rather strange.

All in all they misdrew the blood twice with waits of two weeks each time

and then finally drew the blood correctly and we found out he was not a

galactosemia carrier! Just an error (twice) on the heel stick newborn

screening that they do.

Ok, this became about me...LOL!! I am fascinated with all this stuff....

> From: Patchouli55@...

> Reply-To: cfparents

> Date: Sat, 18 Aug 2001 14:19:36 EDT

> To: cfparents

> Subject: Re: introduction

>

> We got tested prenatally. This is standard at my OB/GYN. I came back as a

> carrier hubby's came back negative. We were told there was basically no

> chance we'd have a child w/CF because of this..........well, low & behold!

> So, that's why we had hubby re-tested. We thought the first must've been

> wrong. Once we heard that there could be additional health risks if he did

> actually get both from me, we had to see a geneticist. From what I know, the

> only additional health risk might be short stature, since he is missing 1 of

> my husband's genes. Although, my husband is 6'4 " so I'm sure he won't be too

> short. The Dr also pointed out something about his pinkie fingers. They are

> thick at the bottom but come to a point at the end. I thought it looked

> completely normal but he says that is a common trait of people receiving

> duplicate copies of a gene from 1 parent. I can see everyone now, running to

> check out their kids' fingers!!!!!!!

> ~

>

>

>

[Guest guest]

Hi ,

Welcome! I had heard of uni-parental disomy in university, but never knoew of

anybody it had happened to. It was one of those theoretical things then. Now

with all the mapping, I bet they are finding more cases, not just with CF.

I am so glad your little guy is doing well with the weight...he is a very big

boy! My daughter is almost 19 lbs but 22 months old. Does this mean he is

pancreas is working well? That would be good news.

All the best,

Jane, mom of (10), Tony(9), (6), Meredith (4) all wo/cf; Eleanora,

22 mos rad/ftt/?cf and one due in November

Patchouli55@... wrote:

> Hello everyone! I've been lurking for a while. My name is & I have

> 2 boys, a 6 year old (Hunter no/CF) & an 11 month old (Max w/CF). Max was

> finally diagnosed when he was 8 months old. He had a rough first year, lots

> of respiratory wheezing & coughing resulting in 4 hospitalizations. The Drs.

> were all in denial about the possibility of CF because he's always been very

> big. He's 23.5 lb. now! He's a piggy-which I hope continues! Anyhow,

> some of you may be familiar w/our story from cystic-l, my son is somewhat of

> a miracle......he is a double DF508 but my husband is NOT a carrier! (Hunter

> & I are both carriers.) My husband is definitely the father!!! So no

> comments there We have seen the geneticist & he believes that Max has

> Uni-parental disomy 7. Which means he got BOTH gene 7's from me. He only

> knows of 1 other case so apparently it's pretty rare. We are going to have

> the official genetic mapping done on the 3 of us to know for sure. I just

> thought some of you might find our story interesting.........anyway, about

> the strangers touching thing, does anyone have any " non-offensive " ways to

> tell people not to touch your child? I find it to be so uncomfortable. I

> always feel like they must think that I think they are a dirt-bag or

> something! There's no way Max would keep the " hand " attached to him. He

> won't even wear a sticker!

> Thanks!

>

>

>

[Guest guest]

Welcome -

My name is Carey and my son, Liam (16 mo.) was just diagnosed in March. This

is a wonderful group and hopefully you will find support and information like

I have. I wish you the best & hope to hear from you often. Carey

Mom to Calvin (4 no CF) and Liam 16 mo. w/ CF

[Guest guest]

Hi ,

Welcome to the list, I am glad you found us. But I am sorry to hear about

Max's cf. To introduce myself, my name is and I have 2 almost grown

kids. Nick is 19, will be a soph at Cal Poly Pomona and doesn't have cf,

is 17, will be a senior in high school and has cf. is doing

pretty well right now, she is supposed to have her 12th or 13th sinus

surgery as soon as we get it authorized (insurance) and scheduled.

was diagnosed when she was 8 months old, the main reason they did a sweat

test was because her electrolytes were screwy and she kept getting

dehydrated. She also had weight loss and a cough, but it wasn't a real bad

cough. She didn't have pneumonia or anything.

Your story about the genetics is interesting. I am confused though, if you

have 2 copies of delta f 508 why don't you have cf? I probably missed

something in reading it there.

Anyway, welcome again and I hope you like the list.

love,

M

[Guest guest]

; this does, though rarely, happen; just l9ve one another and forget

guilt!

n wcf, mom of 3 adults, the youngest of whom has cf also.

[Guest guest]

Christi - welcome --- boy do you have your hands full.... I couldn't believe

the number of children......I am glad you found the time to type......

Rosemary in New York with three children with CF - they are 11, 8.6,

4.8........

I coined the phrase " BREATHE DAMMIT "

I have the luck of the Irish....

[Guest guest]

Wow Christi,

8 kids and only 1 with CF that is GREAT I have 3 kids and two of them have CF

that is amazing to me. Did you even know there was CF in your families? Deb

[Guest guest]

Deb,

I had no idea CF was in our families.I am so amazed

by the fact that a lot of you deal with multiple

cf children or family members every day. I have no idea how you do it

There are times when dealing with just

one child with cf takes everything I have.Y'all have my utmost respect.

Christi

[Guest guest]

WELCOME.....ALWAYS,

GRANDMOMBEV

Introduction

Hi,

Just wanted to introduce myself and my

family..I have a 12 yo daughter

named Mabel with Cystic Fibrosis and severe latex

allergy.

Hope your having a blessed day,

Christi mother of Cheryl 17 ncf, 16

ncf,a 16 ncf,Curtis 14

ncf,Terry 13ncf,Mabel 12 wcf, 8 ncf,

Evangeline 4 ncf.

[Non-text portions of this message have been

removed]

[Guest guest]

Christi,

Welcome to the list. Boy you must be very busy with all your children. But

very lucky to only have 1 out of 8 with cf.

Introduction

> Hi,

> Just wanted to introduce myself and my family..I have a 12 yo daughter

> named Mabel with Cystic Fibrosis and severe latex allergy.

>

> Hope your having a blessed day,

> Christi mother of Cheryl 17 ncf, 16 ncf,a 16 ncf,Curtis

14

> ncf,Terry 13ncf,Mabel 12 wcf, 8 ncf, Evangeline 4 ncf.

>

>

>

>

[Guest guest]

Christi,

Believe it or not but I think it really helps to have two because my youngest

wants to do what the oldest does and I think it makes them not feel so

different them anyone else because they have a sister that has it too. Not

that I would rather have two with CF it's just that it really isn't as bad as

you would think. Deb

[Guest guest]

Welcome!How is your son doing? I'm sure this group

will add to your support because their a great bunch

of people.

Cathy mom of 19 w/cf

--- ghus72744@... wrote:

> Hello everyone.! I am a new member. I have 2 kids, a

> 13 year old son

> and a 10 year old daughter. My son was diagnosed

> with CF at the age

> of 3 mos. We have been very fortunate to have had a

> great support

> team of doctors, family, and friends. I'm looking

> forward to hearing

> from you!

>

>

__________________________________________________

[Guest guest]

WELCOME TO THE LIST... YOU WILL LEARN MUCH, ENJOY SO VERY MUCH AND FEEL VERY

HAPPY YOUR HERE...------WE ARE TOO!!

love & hugs, GRANDMOMbev

Introduction

Hello everyone.! I am a new member. I have 2 kids, a 13 year old son

and a 10 year old daughter. My son was diagnosed with CF at the age

of 3 mos. We have been very fortunate to have had a great support

team of doctors, family, and friends. I'm looking forward to hearing

from you!

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------