Re: (unknown)

January 8, 2001

Congratulations--so soon. Who is your Doctor. I will be following you by

one day.

Dbbr (Deborah)

Dr. Ren, Jan12

LAP DS: BMI 38

At 09:30 PM 1/8/01 +0000, you wrote:

>I have been approved and will be having BPD/DS on Thursday Jan 11.

>Getting very nervous. Any kind words or suggestions as to what to

>expect would be greatly appreciated.

January 16, 2001

PATRICIA WALP wrote:

Please stop all these emails. All I wanted was simple information and I am bombarded with 10 to 300 emails a day. I have unsubscribed, responded to my unsubscribe and I continue to get these. Help.

January 28, 2001

Hi Barb:

Welcome to our loving and supportive group. My name is Tiger, I am 2 years post-op and have lost 224 pounds my stats are in my signature line.

Which vitamins you take depends on which surgeon you use, I take Niferex Forte PN, one a day, 2 calcium pills and 1 magnesium tablet.

I had my first hair loss at around 4 months and it lasted a couple of months and thankfully I always had thick hair, my second bout of hair loss was with my tummy tuck and breast reduction that one started in September and I had the second surgery in early June so that to was about 4 months. I find my hair is thinner now than it use to be.

Food is an interesting subject and everybody is different, we can suggest what we have tried when we first started to eat but it is pretty much trial and error.

If we can be of any help please ask away.

Huggles,

Tiger Lake

Female

160 lbs. BMI 21.7

224lbs gone

165 1/2 inches gone

6' -- 53yrs young

Dr. Anthone@USC So. Calif.

Open DS

Surgery 1/13/99 384lbs BMI 51.21

Last Visit 4/20/99 315.5 BMI 42.07

7/19/99 274.8 BMI 36.64

9/03/99 259.3 BMI 34.54

10/04/99 252.4 BMI 34.02

10/25/99 231 BMI 32

12/17/99 217.5 BMI 30.2

01/19/00 211 BMI 28

02/20/00 195 BMI 26

04/08/00 182.9 BMI 25

06/07/00 160 BMI 21.7

01/08/01 164.3 BMI 21.7

Hernia repair on 06/07/00 Dr. Anthone

Tummy Tuck & Breast Reduction Dr. Downey

Total Weight Loss! 224.1lbs GONE!

Total inches lost 165!

http://www.duodenalswitch.com (our groups very own web site)

January 28, 2001

on 01/28/2001 4:19 AM, countrygirlba@... at countrygirlba@... wrote:

Hi! everyone. I'm trying to learn as much as possible. I have been

reading a lot. What can someone tell me about the vitamins, food, and

hair loss I keep hearing all of you talk about. Thanks Barb

Well, what do you wanna *KNOW* about the vitamins, food and hair loss? I think you need to be more specific and ask certain questions please :-).

Beth

--

Post-Op BPD/DS---->Tuesday, October 17, 2000

Dr. D. S. Hess, Bowling Green, Ohio

http://www.obesityhelp.com/p.phtml?N=Wilkins965886995

Pre-op Weight October 16, 2000: 448lbs BMI 60.8

10-31-00 416lbs BMI 56.4 -32lbs

11-14-00 409lbs BMI 55.5 -39lbs

11-27-00 399lbs BMI 54.1 -49 lbs

12-12-00 392lbs BMI 53.2 -56lbs

12-28-00 387lbs BMI 52.5 -61lbs

01-07-01 377lbs BMI 51.1 -71lbs

01-27-01 367lbs BMI 49.8 -81lbs FOREVER!

May 15, 2001

How terribly sad for this family to have fought such a good fight and then

this happen. All our best wishes and love we send to them.

(originally from Nth Ireland)

(unknown)

> Hi,

>

> I don't know whether I am doing this right, but I just got notice that

> a girl from Northern Ireland died a few weeks ago at the young age of

> 13. Her mom was a short-time member of this list last year and

> apparently Emma did not die from CF-complications, but from a throat

> infection, that went into her bloodstream.

> A candle will burn tonight in Germany.

>

> Torsten

>

> > Hi there,

> >

> > My name is Shirley, I live in Northern Ireland and I have a 13 year

> old daughter (Emma) with Cystic Fibrosis. Emma was diagnosed at 10

> weeks old from the heel prick test which was backed up by a sweat test

> soon afterwards.

> >

> > Emma keeps fairly well and hasn't had very many chest infections.

> She keeps herself fit through horseriding which she is passionate

> about.

> >

> > I'm finding it increasingly difficult to get her to do her physio

> and her nebulisers. Since she became a teenager she just rebels

> against it all. Has anyone else experienced this problem?

> >

> > Shirley

> >

June 28, 2001

Welcome to the list , there is lots of

great people here. I have learned a lot that I didn't

know and keep learning things. My name is Tammy and I

am a single mother of four one wcf.

Tammy mom of four one wcf(Heath 5yo)

tmmrssll@...

--- michelle wrote:

> Hello everyone-

> I am new to this list. I am a single mother of a 16

> year old(no CF), 15 year old(wcf), and 11 year

> old(no

> Cf). I live in Illinois. Cory is currently

> struggling is going to be hospitalized tomarrow with

> lung difficulty. I guess you could say we are the

> unlucky one to have equal lung and digetsive

> problems

> and sinus trouble. He was just discharged from the

> hospital mid May were we were able to get his lung

> functions back up to 90%. As of two days they ago

> they have already dropped to 45%. It has been a

> rough

> year for Cory medically.

> Cory was diagnosed when he was 4 weeks old. He had

> lung difficulties from the beginning along with

> failure to thrive. I am lucky to live in a

> community

> where I am surrounded by my family members.

>

> __________________________________________________

>

June 29, 2001

WELCOME to the list and our loving , sharing Cf Community. you will find

comfort , if not in all the great answers to questions, BUT in the being

able to

vent......rant....rave......yell..........cry..........laugh..........whatev

er. here freely. Please know there will be someone here who has " BEEN

THERE ---DONE THAT " as well.

I am sorry Cory is having all these problems now. It seems it never

rains --just pours. I will keep you all in my thoughts as you enter the Club

today (hospital)..

Tell him I said to " have a great time at the club " .....hahaha

LOVE & HUGS,

GrandmomBEv

(my 16+ yr. old granddaughter --ERIN--has CF as well)

(unknown)

Hello everyone-

I am new to this list. I am a single mother of a 16

year old(no CF), 15 year old(wcf), and 11 year old(no

Cf). I live in Illinois. Cory is currently

struggling is going to be hospitalized tomarrow with

lung difficulty. I guess you could say we are the

unlucky one to have equal lung and digetsive problems

and sinus trouble. He was just discharged from the

hospital mid May were we were able to get his lung

functions back up to 90%. As of two days they ago

they have already dropped to 45%. It has been a rough

year for Cory medically.

Cory was diagnosed when he was 4 weeks old. He had

lung difficulties from the beginning along with

failure to thrive. I am lucky to live in a community

where I am surrounded by my family members.

__________________________________________________

July 1, 2001

Hi

a here from WA in Australia, I just wanted to send my best wishes to you

Cory and your family. I think that having a good support network is a must

when dealing with CF.

Hope his lung function gets back up to 90% soon.

-- (unknown)

Hello everyone-

I am new to this list. I am a single mother of a 16

year old(no CF), 15 year old(wcf), and 11 year old(no

Cf). I live in Illinois. Cory is currently

struggling is going to be hospitalized tomarrow with

lung difficulty. I guess you could say we are the

unlucky one to have equal lung and digetsive problems

and sinus trouble. He was just discharged from the

hospital mid May were we were able to get his lung

functions back up to 90%. As of two days they ago

they have already dropped to 45%. It has been a rough

year for Cory medically.

Cory was diagnosed when he was 4 weeks old. He had

lung difficulties from the beginning along with

failure to thrive. I am lucky to live in a community

where I am surrounded by my family members.

__________________________________________________

July 1, 2001

Hi ,

Welcome. I am fairly new to this list and generally lurk but we have a

couple of things in common. I am a single mother of two boys, both with CF

and one named Cory (he's 14). I am sorry to read that your Cory is

struggling and hope he is feeling better. I just wanted to write and say Hi,

and to give you a pat on the back (even if it is an electronic " pat " ). I

know how hard it is just being a single parent as well as dealing with the

extra that goes with CF. HANG IN THERE!!!!

Edi

July 2, 2001

Hi Deb,

We might have to reschedule 's surgery, we just got new insurance

today, and I didn't really know about it before last week, so as soon as we

get the cards I will have to call everyone and see if they have to get new

authorizations. what fun. good luck to you and your daughter.

love,

M

Mom of Nick age 19 nocf

and age 17 w/cf

July 10, 2001

Welcome and a big HI to you and yours. I know exactly what you mean about

understanding " LIFE " with CF. If you don't already have them, I have a great

many booklets, but even better to see are the tapes.They are of actual folks

with CF and telling there sorry.All are postive.without lying. They are

telling how it is LIVING WITH CF. I would be very happy to send to you---no

charge-- but , I do need your mailing address. I have one everyone loves by

Bill Nye , the science Guy on TV...he explains taking enzymes.great for

kids --but folks learn from it as well :) let me know ...

LOVE & HUGS, grandmomBEV

(of an almost 17 yr old granddaughter with CF)

(unknown)

Hello to all...

My son was diagnosed with highdrops in utero. I was told that day if

he survived through birth I may get to hold him in my arms but only

if I had him vaginally. Today, almost six weeks later I have an

AMAZING boy named .

five days after birth surgeons determined during exploratory surgery

that he had meconium ilus and gave him a ostomy. We were also told

at that time 99.9% sure he had cystic fibrosis. Both parents carried

genotype delta F 508. I have alot of infomation on cf research

etc.etc., but I want to understand more about life at home and

working with ? I want to be realistic about our future

together and fighting this illness. Thank you in advance for sharing

your trials, heart, and your family.

Sincerely,

Crystal

crystalwood1999@...

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.

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

July 10, 2001

Welcome, Crystal--I know you'll enjoy being part of this group--a lot of

wonderful information is shared and exchanged. My son Cody was also born with

meconium ileus--they did surgery at 36 hours old, and removed it--he didn't have

an ostomy, though. Does your son have to wear an ostomy bag then? How long do

they think he'll have to have it? And as far as life at home--it will never be

the same--in some ways it will be harder, and in so MANY ways it will be

immeasurably better! Do you have other children? I had two others before Cody,

and at times I would sit down and cry from frustration, but we made it through

the first few years, and look forward to many, many more (I can't even IMAGINE

how some of you guys with multiple CFers and LOTS of kids do it! You amaze me!

(-. And as far as thinking about the future, this is my philosophy: Any of

us, at any time, could die--we could be walking across the street and get hit by

a car, or we could get in an accident, anything--and so it's not in my or the

kids' best interest to dwell on it. That took me a few years to get to that

point, though, so just remember to let yourself grieve for what you have lost,

but also allow yourself to rejoice in what you have gained--a beautiful little

angel boy!

Stay strong!

, mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7)

smichelle15@...

July 17, 2001

Hi Sue, My 8yold daughter has cf and ADHD. She is presently on 5mg of adderol

once a day. Would be glad to talk with you. LuAnn

July 17, 2001

Hi,

Well we have tried a few meds for his ADHD and they either don't work or he

is over medicated.Maybe we can ask about adderol.How does your daughter do

at school on adderol? still has a hard time focusing on the other meds

they seem to help his hyper activity.What he needs is something that with

take care of both problems not just one.

Sue mom of 7w/cf

Re: (unknown)

> Hi Sue, My 8yold daughter has cf and ADHD. She is presently on 5mg of

adderol

> once a day. Would be glad to talk with you. LuAnn

>

July 19, 2001

HI Sue

Welcome!

That's so great that you son has stayed away from hospital stays. One less

stress to worry about.

Take Care,

Stein........mom to CF (14 mo) & Tori wo/CF (4 yr)

(unknown)

Hello,

I am new to the CFparents.My name is sue We live in Florida and we have 3

kids boy 2 girls my son has CF he is 7 years old.I am not new to CF my sister

also had it she past at the age of 14,that was about 11 years ago.I was 20 when

my son was born my husband was 19.We have been lucky so far he has been pretty

healthy.The last time he was in the hospital he was 8 months old and that was

because he had RSV intestinal flu.We have had our ups and down.He also has

ADHD.He is also very small for his age.He is 7 and weighs 38lbs.Our daughters

are 5 years and 2 years of age.They are still trying to understand why he needs

treatments and medications all the time.This is very hard to explain to young

children.So we try to let them help with some of his treatments but now my son

is getting older he doesn't want the girls bothering him.So now he is doing his

treatments and meds himself with supervision.If anyone is dealing with CF and

ADHD please e-mail me.We are having medication problems for is ADHD.I would like

to hear any suggestions.

Thanks.

Sue

August 28, 2003

My mother and I used to joke that when one of us would lose weight the other

one would gain. We both tend to keep 5 sizes (at least!) in our closet

because of the weird losing/gaining pattern that seems to occur no matter

what we are doing. I think what you say is right tho. People with mito

dont always metabolize food right, therefore the body has trouble figuring

out what to do with it. Sometimes I think it casts it off, and sometimes it

stores food, then doesnt know how to burn the stored food for energy. I

think the thyroid often messes up off and on as well, so sometimes we have

different metabolisms for different periods of time. It takes energy to

run the system that makes energy, and we dont always have the energy to run

it correctly. I have noticed that although I personally do better with

high amounts of protein and fat, and lower amounts of carbs, that sometimes

I require high amounts of carbs to function instead. It is like my system

that burns protein and fat is stronger, but sometimes it needs a rest break,

so I have to burn carbs for a few days. (usually I get sick if I do it for

more than a week or so tho.) I on the other hand, often drink several

ounces of cream a day, and often require as much as 120 grams of protein in

a day! (mind you, I am right around 109-110 pounds) The truth is, with

mito, nothing seems to stay the same! I am constantly having to tweak

medications and diet in order to maintain status quo. It is tiring trying

to avoid being tired! haha.

> This is not based on any medical knowledge; nonetheless, here goes.

>

> I wonder if the weight gain has anything to do with energy not being

> produced/metabolized so instead the body stores the excess in fat?

>

> For most of my life I was thin " skinny " - whether I ate large or ate

> little.

> (I once bugged overweight people by being able to eat more than

> them, without any weight gain.

>

> Then, about 20 years ago, I started to gain weight (without eating

> anymore)and crossed the line into the world of the overweight.

> In the past 6 or so years, I've developed a spare tire (a tractor

> tire) even though I've been eating less/dieting. During the same

> time as the weight gain, the symptoms have gotten worse.

>

> I could use a loss of 30 -35 pounds.

>

> Is this the mito equivalent of the chicken and the egg question?

>

August 28, 2003