Questions

[Guest guest]

Lucy here, would be glad to answer any questions that I might have the answers

for.Love and Prayers

Enderle wrote:

> Angie:

>

> Would certainly be happy to answer questions if posted. Post away and I'll

> respond.

>

>

>

> rpawareness@... wrote:

>

> > hi ll if I made up a list of questions concerning the support group would

> > most of you actually answer them/? there re a few things I have had in my

> > mind but nbeed to pass it along to the supporttees to see if it will fly

> >

> > love, hugs and hope

> > Angie

> > http://www.allplaycollege.com/go.cfm?referredby=rawareness

> >

> > hi and welcome. maybe we can come up with answers that our doctors can't

>

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

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>

> hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Angie,

Ask away ... asking questions are the only way we're ever going to figure

this out!

Kathleen

[Guest guest]

Roy, welcome back, we've missed you. Hope you had a nice trip. Everyone is

willing to answer any of Angie's questions. the only one I have kept track

of was the blood types. Hope you have a nice weekend.

[Guest guest]

In a message dated 05/06/2000 3:17:25 PM Eastern Daylight Time,

RLR1999@... writes:

<< have seen recently a bunch of survey type questions being asked. Is

someone gatherng the answers? >>

I ws assuming that whomever asked the question was gathering the info since I

am not online on a steady basis right now.

love, hugs and hope

Angie

http://www.allplaycollege.com/go.cfm?referredby=rawareness

[Guest guest]

1. does anyone else in your family show have an autoimmune disease or show

signs of having one?

a) if yes list who they are and what they have

2. Do you see other specialists other than the rheumatologist?

if yes list

3. Do you have any other autoimmune diseases or syndromes?

if yes list

4. do you have a good support system at home?

5. do you suffer from depression as a result of having RP?

6. what else would you like to see the list supply/

eg: more support, more medical info, more the real us, chating and

things,

7. besides the obvious change in yourself directly from the disease, do you

feel this has changed you mentally as well as physically and if you how so?

For the spouses

1. how has this affected you?

2. since RP isn't always visable; has it changed your relationship

I will keep a log of the answers and compile the data. please send the

answers directly to me privately. when I send the results out no names will

go with it so only I will know who answers and what the answers are.

thank you

love, hugs and hope

Angie

http://www.allplaycollege.com/go.cfm?referredby=rawareness

[Guest guest]

rpawareness@... wrote:

1. does anyone else in your family show have an autoimmune

disease or show

signs of having one?

a) if yes list who they are and what they have

Not that I know of. I didn't know I had RP until 4 months ago.

2. Do you see other specialists other than the rheumatologist?

if yes list. I see my regular GP,

the ENT (Local specialists) and Rheumatologist at Duke Clinic

3. Do you have any other autoimmune diseases or syndromes?

if yes list. I have been diagnosed with Klippel-Feil

Syndrome which has fused vertebrae at the top of my spine, Oculta Spina

Bifida, double uterus, double uvula, limited range of motion in the neck,

low hairline, and other things go along with it. My daughter and

her 3 year old son also have KFS. Doctors at Duke Genetics clinic

feel that some of 's neurological problems may have come from the

KFS. My daughter has the double uterus, the double uvula, Oculta

Spina Bifida, limited range of motion in turning her head, her son has

a double kidney instead of the bifed uterus, his kidneys are fused at the

bottom and function seperately and they call it a horseshoe kidney.

4. do you have a good support system at home?

My daughter and her husband and three children live

with me and are understanding of my condition and try to help me

feel better when I am "beating myself up" or having a "pitty party".

I have good "pitty parties", I will invite the group sometime.

5. do you suffer from depression as a result of having RP?

Yes, as a matter of fact I am presently taking Paxil

for depression. I had gone off of it after I retired from teaching

in an institution for the mentally retarded, but got back on it after I

was diagnosed with RP. Mainly because I understand that stress can

cause you to flare easily and I have a plenty of that to go around to everyone.

My Paxil does seem to help.

6. what else would you like to see the list supply/

eg: more support, more medical info, more the real

us, chating and

things, ALL OF THE ABOVE

7. besides the obvious change in yourself directly from the disease,

do you

feel this has changed you mentally as well as physically and if you

how so?

For the spouses I THINK THAT I JUST HAVE AN ATTITUDE OF NOT CARING

ABOUT MY WEIGHT ANYMORE, THAT I HAVE OTHER MORE IMPORTANT THINGS TO WORRY

ABOUT AND THAT MY LOOKS ARE ABOUT TO START CHANGING AND PEOPLE WON'T BE

NOTICING MY WEIGHT LIKE THEY WILL OTHER THINGS ABOUT ME. THE PREDNISONE

DOES ENOUGH IN THAT AREA. WITH BLOWN UP CHEEKS AND MAKES ME LOOK LIKE A

CHIPMUNK.

1. how has this affected you? I DON'T HAVE A SPOUSE BUT I DON'T

THINK I AM REALLY WORRIED ABOUT WHAT A MAN MIGHT THINK ABOUT MY LOOKS ANYMORE

THAN IT MIGHT BOTHER ME WITH THE WAY A FRIEND OR FAMILY MAY SEE ME, ESPECIALLY

MY GRANDCHILDREN.

2. since RP isn't always visable; has it changed your relationship

THERE ARE TIMES THAT I CAN FEEL AS IF I DON'T HAVE A THING WRONG

WITH ME, LIKE WHEN I AM NOT TRYING TO FLARE. (FOR THE LAST MONTH,

I HAVE HAD SOME SIGN OF FLARING EACH AND EVERY DAY)

I will keep a log of the answers and compile the data. please send the

answers directly to me privately. when I send the results out no names

will

go with it so only I will know who answers and what the answers are.

thank you THANK YOU ANGIE, FOR ALL OF YOUR TIME , CARING AND LOVE FOR

THE ENTIRE GROUP. LUCY

love, hugs and hope

Angie

http://www.allplaycollege.com/go.cfm?referredby=rawareness

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hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

1. does anyone else in your family show have an autoimmune disease or show

signs of having one?

a) if yes list who they are and what they have - My grandmother had

arthritis, my brother, uncles and grandfather have diabetes, my dad had

thyroid cancer and I'm sure he had thyroid problems prior to that but it went

without diagnosis

2. Do you see other specialists other than the rheumatologist?

if yes list

Opthomologist (sp), saw an upper GI guy

3. Do you have any other autoimmune diseases or syndromes?

if yes list - inflammatory arthritis, sjogrens syndrome

4. do you have a good support system at home? Yes

5. do you suffer from depression as a result of having RP? No

6. what else would you like to see the list supply/

eg: more support, more medical info, more the real us, chating and

things,

7. besides the obvious change in yourself directly from the disease, do you

feel this has changed you mentally as well as physically and if you how

so?Yes, I have become more patient and have learned to trust in God, not rely

on myself.

[Guest guest]

I had my surgery on 11/18/03. I went today and got the tube out and I feel

much better! I have lost 11 pds from my preop visit on 11/13 to today! You would

think with as little as I am taking in it would be more but I am cool with it.

Here are my questions! I know EVERYONE and EVERY situation is different but

it just helps to ask others experiences!

Right now and until this coming saturday I am on full liquid diet! Taking in

80 grams of protein a day.

1.) How much weight did you loose the first week? Where you on liquids or

just soft foods?

2.) Did you have trouble with diarreah? Im thinking its from being on

liquids..Maybe the protein??

3.) Starting this morning I have a terrible rumbly in my tummy. Kind of like

gas but I don't ever pass it. Sounds like thunder in my belly and pretty loud!

Anyone experience this? If so how long did it last?

4.) Did you have trouble when people at real foods around you when you

couldnt have them?

5.) The first week or 2 how much should we be walking? I have been in pretty

much pain till today with the tube so I have gotten in 1/4 mile the last 2

days. Hopefully tomorow I can get more!

6.) I am calling the dr tomorrow but just curious. At what stage can I try

milk? just to give me something different to drink....

THANKS IN ADVANCE!!

Crystal

11/18/03

365/348/175(some weight lost preop)

-17 pds Gone FOREVER!!!

Dr Bellanger

Vista Surgical Center

http://CrystalsWLSJourney.homestead.com/index.html

[Guest guest]

Hi Crystal, and CONGRATS on the loss!!!!! I saw my doc 2 weeks post-op, and

was down 26 lbs-most of that being water weight....after that, I seem to be

losing 2-3 lbs. weekly......slow, but a loss is a loss. I am working on getting

my protein in...I find it difficult to get 60-80 gms of protein in daily. I

still tend to get nauseated, but am really working on the intake. I was on clear

liquids for the first 2 weeks until the ok from the doc...2) Yes, I did have

diarrhea until my body became adjusted, and it lasted for like 3 weeks. 3) No

rumbling, but I noticed that I get a lot of gurgling in my throat after eating.

4) Hubby ate out a few times with me with him, and yes, it was difficult, but it

is not forever...just temporarrily....5) take it easy on the exercise...just do

what you can and don't push it. When the doc gave me the ok, I joined Curves,

and LOVE it!!!!! 6) Get the ok from your doc before you advance your diet. Glad

things are going well....keep us posted. I hope this helps?....sherri

Questions

I had my surgery on 11/18/03. I went today and got the tube out and I feel

much better! I have lost 11 pds from my preop visit on 11/13 to today! You

would

think with as little as I am taking in it would be more but I am cool with it.

Here are my questions! I know EVERYONE and EVERY situation is different but

it just helps to ask others experiences!

Right now and until this coming saturday I am on full liquid diet! Taking in

80 grams of protein a day.

1.) How much weight did you loose the first week? Where you on liquids or

just soft foods?

2.) Did you have trouble with diarreah? Im thinking its from being on

liquids..Maybe the protein??

3.) Starting this morning I have a terrible rumbly in my tummy. Kind of like

gas but I don't ever pass it. Sounds like thunder in my belly and pretty loud!

Anyone experience this? If so how long did it last?

4.) Did you have trouble when people at real foods around you when you

couldnt have them?

5.) The first week or 2 how much should we be walking? I have been in pretty

much pain till today with the tube so I have gotten in 1/4 mile the last 2

days. Hopefully tomorow I can get more!

6.) I am calling the dr tomorrow but just curious. At what stage can I try

milk? just to give me something different to drink....

THANKS IN ADVANCE!!

Crystal

11/18/03

365/348/175(some weight lost preop)

-17 pds Gone FOREVER!!!

Dr Bellanger

Vista Surgical Center

http://CrystalsWLSJourney.homestead.com/index.html

[Guest guest]

Crystal

I can't recall how much I lost the first week but it was around 15 pounds

(alot of that was water I am sure).

I was on liquids the first month I was home.

When I first came home from the hospital I didn't have a bowel movement for

like 10 days. Then I had diarrhea. I still have it occasionally (11 weeks

post op).

I imagine alot of things cause the diarrhea. Just the changes made to your

intestine could cause it. My doctor told me that while I was

adjusting/recovering I could expect it to come and go (no pun intended) for

up to about 6 months. It does get a bit better when you get on solid foods.

The rumbling in the belly is gas and don't worry it WILL pass eventually.

Now I have the noise but it passes....frequently!!!)

It doesn't bother me when people have food that I can't have. Sometimes

when hubby has something that I really shouldn't eat I might try a taste

(very small we are talking baby spoon size taste) and usually it doesn't

taste good to me. My taste buds have been totally whacked since the

surgery. Very little actually tastes good to me these days.

You should walk as much as you can.

I was able to have milk while I was still in the hospital. I think it was

the day after surgery.

Candi

Questions

I had my surgery on 11/18/03. I went today and got the tube out and I feel

much better! I have lost 11 pds from my preop visit on 11/13 to today! You

would

think with as little as I am taking in it would be more but I am cool with

it.

Here are my questions! I know EVERYONE and EVERY situation is different

but

it just helps to ask others experiences!

Right now and until this coming saturday I am on full liquid diet! Taking

in

80 grams of protein a day.

1.) How much weight did you loose the first week? Where you on liquids or

just soft foods?

2.) Did you have trouble with diarreah? Im thinking its from being on

liquids..Maybe the protein??

3.) Starting this morning I have a terrible rumbly in my tummy. Kind of

like

gas but I don't ever pass it. Sounds like thunder in my belly and pretty

loud!

Anyone experience this? If so how long did it last?

4.) Did you have trouble when people at real foods around you when you

couldnt have them?

5.) The first week or 2 how much should we be walking? I have been in

pretty

much pain till today with the tube so I have gotten in 1/4 mile the last 2

days. Hopefully tomorow I can get more!

6.) I am calling the dr tomorrow but just curious. At what stage can I try

milk? just to give me something different to drink....

THANKS IN ADVANCE!!

Crystal

11/18/03

365/348/175(some weight lost preop)

-17 pds Gone FOREVER!!!

Dr Bellanger

Vista Surgical Center

http://CrystalsWLSJourney.homestead.com/index.html

[Guest guest]

hey crystal. my answers are in ///// ///////

lori h.

> I had my surgery on 11/18/03. I went today and got the tube out and I feel

> much better! I have lost 11 pds from my preop visit on 11/13 to today! You

would

> think with as little as I am taking in it would be more but I am cool with it.

> Here are my questions! I know EVERYONE and EVERY situation is different but

> it just helps to ask others experiences!

>

> Right now and until this coming saturday I am on full liquid diet! Taking in

> 80 grams of protein a day.

>

> 1.) How much weight did you loose the first week? Where you on liquids or

> just soft foods?

/////// 16 lbs in 7 days /////////

> 2.) Did you have trouble with diarreah? Im thinking its from being on

> liquids..Maybe the protein??

//////// not initially ////////

> 4.) Did you have trouble when people at real foods around you when you

> couldnt have them?

////////// nope b/c i wasn't hungry till 5 months out /////////

> 5.) The first week or 2 how much should we be walking? I have been in pretty

> much pain till today with the tube so I have gotten in 1/4 mile the last 2

> days. Hopefully tomorow I can get more!

////// @ 2 weeks out i would walk around the mall (s)///////

> THANKS IN ADVANCE!!

> Crystal

> 11/18/03

> 365/348/175(some weight lost preop)

> -17 pds Gone FOREVER!!!

> Dr Bellanger

> Vista Surgical Center

> http://CrystalsWLSJourney.homestead.com/index.html

[Guest guest]

Hi Crystal,

Glad your surgery went well. I got home Friday and have lost the

total of 15lbs as of today...I can answer some of your questions as

of what the nurse told me before I left the hospital...Hope it helps.

1)I am on full liquids, I can have:low fat yogurt,strained

soups,apple juice,crystal lite,flavored uncarbinated water, creamed

soups pureed with chicken broth, and instant mashed potatoes made

with chicken broth instead of milk, you dont have to add salt

2)yes I had a horrible time with diarreah, it hit me at 5am friday

morn, I still have it, I go to the bathroom to pass gas b/c I know i

will do other than just pass gas....lol..but the nurse assured me it

will get better,,just remember what she told me.. " better comming out

than staying in " ...lol

3) yes I have the rumbly in my tummy I can hear it and wonder some

times if anyone else can..but again like the nurse said..it will

eventually pass

4)At the beginning I had a problem with it, but I surprised my self

Sunday, My family had an early Thanksgiving Dinner b/c my dad wasnt

going to be home and I did very well. I just made what I could eat

and brought it with me, Believe it or not I was not tempted with any

of the other stuff cooked.

5)I walk about every 4 hrs around the perimiter of my yard twice.

I had my tubes taken out before I came home but I know how

frustrating it was to walk with it in the hospital.

6) I am surprised they did not give you milk in the hospital. They

started me out on 2tsp of skim milk as soon and I was started on

liquids. But every Dr is different, I hated skim milk but I found a

really good one at Wal-Mart it is by Dairy fresh, Fat Free Skim Mils

Supreme.. it tastes really good.

I know that I am as far along as you since we had surgery on the

same day..But I just wanted to give you the input my DR and the

nurses had shared with me....

11/18/03

220/205/120?

Dr Dyas

Providence Hospital

Mobile AL

[Guest guest]

i am so glad that i am not the only one that tastes buds have changed sine

the wls. i do not have a taste for much of anything that i used to i had my

surgery on 10-28-03 and i am slowly working my way to more solid foods but

nothing

appeals to me or at time it will taste good today and tomorrow it wont. and i

know that i am not getting in the protien that i should. i hope that this

passes soon because i really do not want to get sick and end up back in the

hospital.

nora

post-op

10-28-03

292/263/160

[Guest guest]

post 817 I believe

Questions

Now that I've gotten my bearings around here, can somebody tell me if there is an archived post anywhere on here that describes the general process Kaiser patients go through when pursuing WLS? I'm in Northern California, if that matters.Tonya

[Guest guest]

Hi Carol,

I eat at very least 60 grams of protein a day - often a fair bit more -

and I take my vitamins faithfully. Nonetheless, my hair has been

falling out for about the last 6 to 8 weeks. I understand your concern

with your thin, baby-fine hair - sounds like mine. Baby-fine,

board-straight and very thin even before it started falling out. Sigh .

.. . I do take comfort in the fact that everyone says that it will grow back.

All the best,

Kay

open RNY 12/1/03

carol colwell wrote:

> Kay,

> Since you have kept faithful track of your protein intake, I was

> wondering if you have lost alot of hair (I worry about this since mine

> is thin and baby fine already).

> Carol

[Guest guest]

Thanks Kay. I bought Nioxin at Costco and will start using the shampoo. Even if it doesn't help, what little hair i will have left will be in great shape (lol).

CarolKay wrote:

Hi Carol,I eat at very least 60 grams of protein a day - often a fair bit more - and I take my vitamins faithfully. Nonetheless, my hair has been falling out for about the last 6 to 8 weeks. I understand your concern with your thin, baby-fine hair - sounds like mine. Baby-fine, board-straight and very thin even before it started falling out. Sigh . . . I do take comfort in the fact that everyone says that it will grow back.All the best,Kayopen RNY 12/1/03carol colwell wrote:> Kay,> Since you have kept faithful track of your protein intake, I was > wondering if you have lost alot of hair (I worry about this since mine > is thin and baby fine already).> Carol

[Guest guest]

Also, check the "Files" section, Tonya. I believe the process was written down by someone (forgive me, I am terrible at remembering names) in great detail. There was a very good entry in the files section.

Laurie W.

Questions

Now that I've gotten my bearings around here, can somebody tell me if there is an archived post anywhere on here that describes the general process Kaiser patients go through when pursuing WLS? I'm in Northern California, if that matters.Tonya