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> My friend had her open ds on July 2nd...

> Since then, she's been hospitalized twice.

Nothing really unusual about that. I've been in and out of my local

hospital so often the past few months that most of the staff knows me

on sight, if not by name.

Last time I was in, I got to watch as the doc put a central line into

my upper chest. (My veins collapse all the time, so regular IVs

rarely last 24 hours before blowing out.) It was pretty interesting,

although I must admit I was a bit taken aback by the size of the

guide needle -- it had to be at least four inches long!

Besides, look at it this way, your friend's problems could be a lot

worse -- she could be in Mt. Sinai!

<snip>

> treated her for TSS (toxic shock

> syndrome) and sent her home.

Okay, so, they apparently fixed that problem, right? Tell your

friend not to be bothered if the docs never figure out exactly what

was wrong -- that's pretty normal for internal medicine. The

important thing is that they cure it before it kills you, which they

obviously did in your friend's case.

Two months ago, I went into the hospital with a really bad infection -

- they found bacteremia in my blood stream, but they never did locate

the site of the infection. Nonetheless, they pumped me full of IV

Vancomycin for over a week, and they cured it, whatever exactly it

was.

Of course, the Vancomycin killed off all of the good bacteria in my

large intestine, so three weeks later I was back in the hospital with

a " C. Dificile " infection, which they treated with -- you guessed

it! -- more IV antibiotics, (flagyl and Cipro).

<snip>

> Now she's back in the hospital ...

> because her incision started to reopen.

An open incision is really no big deal. Sure, it's a bit more

maintenance than a closed incision, but tell your friend to look at

it this way: she'll learn some basic nursing skills without having

to go to school. I figure that the next time we have a big

earthquake out here in California, I'll be a great asset to the

community as a volunteer semi-paramedic. <<<grin>>>

> ... she's complaining of having NO APPETITE.

> Of getting full after 2 sips of water ...

Again, not unusual at all, particularly after one has been ill. For

me, the period during and after each hospitalization was just like

starting over again as a brand new post-op. But it gets better with

time.

> and SERIOUSLY regretting the whole surgery.

There are three factors that determine how we do as post-ops:

1. attitude; and,

2. Attitude; and,

3. ATTITUDE!!!!!

It seems that your friend perhaps needs a little bit of " tough love "

in this regard...

Would she really rather spend the rest of her life, (short though it

might be), as a morbidly obese person, experiencing all of the

negatives that go along with that, such as:

-- being stared at by children and snickered at by co-workers

-- dirty looks from grocery clerks

-- being invisible to the opposite sex

-- being " weak willed " and " lazy " in the eyes of much of society

-- the joys of being fat on public transportation

-- buying all her clothes at the " fat lady " store

Not to mention all the things she has to look forward to:

-- joint pain

-- slowly clogging arteries & weakening heart

-- fatty liver

-- diabetes

-- early death

-- etc...

Ask your friend, is what she's experienced for a few WEEKS really

worse than an entire lifetime of being morbidly obese? I think not.

Sure, she's feeling really crappy right now, but it will pass. If

she's really depressed, then she should ask her doc for some anti-

depressants.

In any event, she needs to get up and get walking! Sip, sip, sip,

sip, sip, and sip some more. Bite, chew, chew, chew, chew, chew,

chew, chew, chew, chew, chew, swallow. Repeat all of the above.

Sorry if I sound callous. I don't mean to. I can't help it, because

I just finished re-reading Joe Frost's story on Duodenalswitch.com:

http://www.duodenalswitch.com/Patients/Joe/joe.html

as well as his most recent post:

http://groups.yahoo.com/group/duodenalswitch/message/99955

Compared to what Joe has gone through, and continues to go through,

most of the rest of us have it pretty darn easy. That may not make

it easy, but it should at least provide us with some perspective.

Tom

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Guest guest

> My friend had her open ds on July 2nd...

> Since then, she's been hospitalized twice.

Nothing really unusual about that. I've been in and out of my local

hospital so often the past few months that most of the staff knows me

on sight, if not by name.

Last time I was in, I got to watch as the doc put a central line into

my upper chest. (My veins collapse all the time, so regular IVs

rarely last 24 hours before blowing out.) It was pretty interesting,

although I must admit I was a bit taken aback by the size of the

guide needle -- it had to be at least four inches long!

Besides, look at it this way, your friend's problems could be a lot

worse -- she could be in Mt. Sinai!

<snip>

> treated her for TSS (toxic shock

> syndrome) and sent her home.

Okay, so, they apparently fixed that problem, right? Tell your

friend not to be bothered if the docs never figure out exactly what

was wrong -- that's pretty normal for internal medicine. The

important thing is that they cure it before it kills you, which they

obviously did in your friend's case.

Two months ago, I went into the hospital with a really bad infection -

- they found bacteremia in my blood stream, but they never did locate

the site of the infection. Nonetheless, they pumped me full of IV

Vancomycin for over a week, and they cured it, whatever exactly it

was.

Of course, the Vancomycin killed off all of the good bacteria in my

large intestine, so three weeks later I was back in the hospital with

a " C. Dificile " infection, which they treated with -- you guessed

it! -- more IV antibiotics, (flagyl and Cipro).

<snip>

> Now she's back in the hospital ...

> because her incision started to reopen.

An open incision is really no big deal. Sure, it's a bit more

maintenance than a closed incision, but tell your friend to look at

it this way: she'll learn some basic nursing skills without having

to go to school. I figure that the next time we have a big

earthquake out here in California, I'll be a great asset to the

community as a volunteer semi-paramedic. <<<grin>>>

> ... she's complaining of having NO APPETITE.

> Of getting full after 2 sips of water ...

Again, not unusual at all, particularly after one has been ill. For

me, the period during and after each hospitalization was just like

starting over again as a brand new post-op. But it gets better with

time.

> and SERIOUSLY regretting the whole surgery.

There are three factors that determine how we do as post-ops:

1. attitude; and,

2. Attitude; and,

3. ATTITUDE!!!!!

It seems that your friend perhaps needs a little bit of " tough love "

in this regard...

Would she really rather spend the rest of her life, (short though it

might be), as a morbidly obese person, experiencing all of the

negatives that go along with that, such as:

-- being stared at by children and snickered at by co-workers

-- dirty looks from grocery clerks

-- being invisible to the opposite sex

-- being " weak willed " and " lazy " in the eyes of much of society

-- the joys of being fat on public transportation

-- buying all her clothes at the " fat lady " store

Not to mention all the things she has to look forward to:

-- joint pain

-- slowly clogging arteries & weakening heart

-- fatty liver

-- diabetes

-- early death

-- etc...

Ask your friend, is what she's experienced for a few WEEKS really

worse than an entire lifetime of being morbidly obese? I think not.

Sure, she's feeling really crappy right now, but it will pass. If

she's really depressed, then she should ask her doc for some anti-

depressants.

In any event, she needs to get up and get walking! Sip, sip, sip,

sip, sip, and sip some more. Bite, chew, chew, chew, chew, chew,

chew, chew, chew, chew, chew, swallow. Repeat all of the above.

Sorry if I sound callous. I don't mean to. I can't help it, because

I just finished re-reading Joe Frost's story on Duodenalswitch.com:

http://www.duodenalswitch.com/Patients/Joe/joe.html

as well as his most recent post:

http://groups.yahoo.com/group/duodenalswitch/message/99955

Compared to what Joe has gone through, and continues to go through,

most of the rest of us have it pretty darn easy. That may not make

it easy, but it should at least provide us with some perspective.

Tom

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Guest guest

Michele, I'm so sorry you're having complications. They happen to

folks for time to time, the DS is a major surgery. Have faith that

you'll recover and do just fine. All of this will just be a memory

and you'll have the healthy life you deserve. I will keep you in my

prayers and send healing, comforting thoughts your way.

Hang in there, sweetie. Love, Meli

-- In duodenalswitch@y..., sumdumchum@y... wrote:

> My friend had her open ds on July 2nd with Dr. Macura of Staten

> Island. Since then, she's been hospitalized twice. The first

time,

> they didn't know what was wrong with her so they reopened her

> incision to see if it was surgery related - it wasn't. She spent 2

> weeks in ICU and the doctor's didn't know what was wrong with her.

> They treated her for TSS (toxic shock syndrome) and sent her home.

>

> Now she's back in the hospital (4 days after being released)

because

> her incision started to reopen. Anyway, she's complaining of

having

> NO APPETITE. Of getting full after 2 sips of water and SERIOUSLY

> regretting the whole surgery.

>

> I, fortunately, do not have any of these problems so I don't know

> what to tell her! Did anybody go through this during their

> recovery? What advice can I give my friend?

>

> I would appreciate ANY help! I'm going to visit her tonight at the

> hospital and want to print (and bring to her) any advise,

> inspiration, get wells I can get! Her name is Michele.

>

> I hope I make sense, i'm really nervous for my friend!

>

> -EC

> 7/15 Lap BPD/DS w/ Dr. Ren of NYU

> 225 5'4 28 yrs old - last weigh in 8/3 200

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Guest guest

Michele, I'm so sorry you're having complications. They happen to

folks for time to time, the DS is a major surgery. Have faith that

you'll recover and do just fine. All of this will just be a memory

and you'll have the healthy life you deserve. I will keep you in my

prayers and send healing, comforting thoughts your way.

Hang in there, sweetie. Love, Meli

-- In duodenalswitch@y..., sumdumchum@y... wrote:

> My friend had her open ds on July 2nd with Dr. Macura of Staten

> Island. Since then, she's been hospitalized twice. The first

time,

> they didn't know what was wrong with her so they reopened her

> incision to see if it was surgery related - it wasn't. She spent 2

> weeks in ICU and the doctor's didn't know what was wrong with her.

> They treated her for TSS (toxic shock syndrome) and sent her home.

>

> Now she's back in the hospital (4 days after being released)

because

> her incision started to reopen. Anyway, she's complaining of

having

> NO APPETITE. Of getting full after 2 sips of water and SERIOUSLY

> regretting the whole surgery.

>

> I, fortunately, do not have any of these problems so I don't know

> what to tell her! Did anybody go through this during their

> recovery? What advice can I give my friend?

>

> I would appreciate ANY help! I'm going to visit her tonight at the

> hospital and want to print (and bring to her) any advise,

> inspiration, get wells I can get! Her name is Michele.

>

> I hope I make sense, i'm really nervous for my friend!

>

> -EC

> 7/15 Lap BPD/DS w/ Dr. Ren of NYU

> 225 5'4 28 yrs old - last weigh in 8/3 200

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Guest guest

Wow Tom, reading your description of the horrors of this surgery that you

say are no big deal, or not even unusual makes me really second guess

whether I want this surgery or not. I'm not sure I want to go through all

that just to be thin. What you describe here sounds truly horrifying. I

really feel for and would hate to be in her shoes. I know you were

just trying to help, but now I am afraid of the procedure.

Re: PLEASE HELP!

> Nothing really unusual about that. I've been in and out of my local

> hospital so often the past few months that most of the staff knows me

> on sight, if not by name.

>

> Last time I was in, I got to watch as the doc put a central line into

> my upper chest. (My veins collapse all the time, so regular IVs

> rarely last 24 hours before blowing out.) It was pretty interesting,

> although I must admit I was a bit taken aback by the size of the

> guide needle -- it had to be at least four inches long!

>

> Two months ago, I went into the hospital with a really bad infection -

> - they found bacteremia in my blood stream, but they never did locate

> the site of the infection. Nonetheless, they pumped me full of IV

> Vancomycin for over a week, and they cured it, whatever exactly it

> was.

>

> Of course, the Vancomycin killed off all of the good bacteria in my

> large intestine, so three weeks later I was back in the hospital with

> a " C. Dificile " infection, which they treated with -- you guessed

> it! -- more IV antibiotics, (flagyl and Cipro).

>

> An open incision is really no big deal. Sure, it's a bit more

> maintenance than a closed incision,

>

> Again, not unusual at all, particularly after one has been ill. For

> me, the period during and after each hospitalization was just like

> starting over again as a brand new post-op. But it gets better with

> time.

>

> Compared to what Joe has gone through, and continues to go through,

> most of the rest of us have it pretty darn easy. That may not make

> it easy, but it should at least provide us with some perspective.

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Guest guest

Wow Tom, reading your description of the horrors of this surgery that you

say are no big deal, or not even unusual makes me really second guess

whether I want this surgery or not. I'm not sure I want to go through all

that just to be thin. What you describe here sounds truly horrifying. I

really feel for and would hate to be in her shoes. I know you were

just trying to help, but now I am afraid of the procedure.

Re: PLEASE HELP!

> Nothing really unusual about that. I've been in and out of my local

> hospital so often the past few months that most of the staff knows me

> on sight, if not by name.

>

> Last time I was in, I got to watch as the doc put a central line into

> my upper chest. (My veins collapse all the time, so regular IVs

> rarely last 24 hours before blowing out.) It was pretty interesting,

> although I must admit I was a bit taken aback by the size of the

> guide needle -- it had to be at least four inches long!

>

> Two months ago, I went into the hospital with a really bad infection -

> - they found bacteremia in my blood stream, but they never did locate

> the site of the infection. Nonetheless, they pumped me full of IV

> Vancomycin for over a week, and they cured it, whatever exactly it

> was.

>

> Of course, the Vancomycin killed off all of the good bacteria in my

> large intestine, so three weeks later I was back in the hospital with

> a " C. Dificile " infection, which they treated with -- you guessed

> it! -- more IV antibiotics, (flagyl and Cipro).

>

> An open incision is really no big deal. Sure, it's a bit more

> maintenance than a closed incision,

>

> Again, not unusual at all, particularly after one has been ill. For

> me, the period during and after each hospitalization was just like

> starting over again as a brand new post-op. But it gets better with

> time.

>

> Compared to what Joe has gone through, and continues to go through,

> most of the rest of us have it pretty darn easy. That may not make

> it easy, but it should at least provide us with some perspective.

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Guest guest

,

Not having surgery is doing something. It is choosing morbid obesity

and all the risks it carries with it. Diabetes, heart problems,

respiratory difficulties, joint breakdown, loss of mobility,

restricted life-- these are a few of the promises of MO.

Surgery has a risk. You bet it does. But your chances of a

healthier life are far gerater *with* the surgery than without it. I

was 64 yeard old when I had the DS surgery. I couldn't afford *not*

to.

, healthy and down 95# in Seattle

Open DS 1/5/01

> Wow Tom, reading your description of the horrors of this surgery

that you

> say are no big deal, or not even unusual makes me really second

guess

> whether I want this surgery or not. I'm not sure I want to go

through all

> that just to be thin. What you describe here sounds truly

horrifying. I

> really feel for and would hate to be in her shoes. I know

you were

> just trying to help, but now I am afraid of the procedure.

>

>

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  • 2 years later...
Guest guest

Ok I just got a call from my doctor and she said that she got the

readings from my ultrasound the other day and that the only thing

that the ultrasound detected was two cystic developments and they

were not sure what that ment. She also had me come in and take a

blood test to be absolutly sure that I am pregnant. I took 5 HP test

and a urine test at the doctor and they were all positive. Is it

possible that I am not pregnant? Does anyone know if you are only a

few weeks along will they not detect anything on the ultrasound? It

could just be that I am not as far aong as they had thought at first.

She also told me that sometimes there can be a sack formed with no

baby in it and it can read the same as being pregnent. I am soooo

confused and a little scared. I have had all the symptoms besides the

morning sickness. I have missed my period, have had tender breasts

and I have the slight pains by my hip bones. Could this just be in my

head or is there a chance that the doctor is wrong. If anyone can

help or has had somehting similar happen please let me know! Thanks!

~e

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  • 1 year later...

Hello,

My son Diego went through the same thing, no sleep etc... We were using the

Markell white shoes with a red bar and they were a nightmare. First because

they were placed on the bar but the bar itself was dangerous with butterfly

screws and a long bolt sticking out on both sides so when Diego lifted them and

brought them to his face they would hit. Long story short he is 5 1/2/ months

now

and just recently came out of a plaster cast that Dr. Ponseti applied since

his left foot was not corrected thanks to a local Dr. here who " claimed " to

know Ponseti. We met when we went to Iowa and Diego is currently

in

the leather boots. What a difference! Diego is so much happier and

he did not even fuss when I put them on after 3 weeks in a cast, plus he is

sleeping on his tummy most of the night (we co-sleep). shoes are soft

and cradle the foot with no pressure like the white ones cause. If you cannot

afford the shoes talk to I am sure he can work something out (payments??).

I had a huge yard sale to help pay for them and am currently fighting with the

insurance company.

Good luck,

mom to Diego bc 3/24/05

Phx, Az

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Hi ~ We went through the same thing with the bar. My understanding is

that this is normal.... It has been two weeks for us and my daughter,

Maddie, is sleeping about 5-6 hours at night. I should tell you that she had

been sleeping about 7-8 hours, so we are still not back there. The first

three nights were AWFUL! I too did not sleep!!! She would only sleep when I

was holding her. I did find one thing that gave me a break during the first

few days... After he doses off, try to put him in his swing with a little

music. Maddie likes Baby Mozart.

As for the degree of rotation, that is the same problem we are having now!

Maddie has BCF and we are only at 50 degrees. We go today for a second

opinion with a Ponseti doctor. There are others on the board that know a lot

more about this, so I am sure you will get some advice. Good Luck!!!

Kim

>

> Please help...Vinnie got his DBB and shoes yesterday and it has been a

> nightmare. I have already had to put them on again 4 or 5 times and I

> have had no sleep for 24 hours now. He has been sleeping VERY lightly

> and will absolutely not fall asleep unless he is being held. Is this

> normal? -kelly :o)

> PS...I noticed both shoes are set at 45 degrees. I thought I remember

> reading something else. He only has LCF but I thought the clubfoot

> should be 70 and the other one 40???????

>

>

>

>

>

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The shoe on the clubfoot should be set to 70 degrees

or at minimum 60 I believe. However, if the foot was

not corrected to that angle in the casts then they

will not be able to get it there with the shoes. Is

Vinnie coming out of the shoes? This is a red flag

that may indicate that his feet are not completely

corrected. Are there blisters or pressure sores on his

feet?

On our group's page on yahoo, there I believe is a

link to the DBB/FAB tips and tricks to help with

successful wear. These have helped may people get

through this adjustment period. My daughter had

difficulty adjusting but it only really took her a few

days to settle into them. However, hers never came

off.

Who is your doctor and where are you located? If the

shoes continue to come off, I would suggest that you

seek a second opinion. You could also send your story

with pictures to Dr. Ponseti via email and he will

give you another opinion as well.

I hope everything settles down for you soon and you

are able to get some sleep?

Jenni

--- elemkc wrote:

> Please help...Vinnie got his DBB and shoes yesterday

> and it has been a

> nightmare. I have already had to put them on again 4

> or 5 times and I

> have had no sleep for 24 hours now. He has been

> sleeping VERY lightly

> and will absolutely not fall asleep unless he is

> being held. Is this

> normal? -kelly :o)

> PS...I noticed both shoes are set at 45 degrees. I

> thought I remember

> reading something else. He only has LCF but I

> thought the clubfoot

> should be 70 and the other one 40???????

>

>

>

Jenni-

Mom to (10/31/01) and Kelsey (11/7/03)happy girl in DBB nights only for

left clubfoot.

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

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One thing to keep in mind about the degrees of rotation is that it should be 70

for a cf and 45 for non-cf, HOWEVER, if the cf is set different than the final

cast was that would explain any fussiness. Check the final cast and see what it

was angled at and compare. Hope this helps....

Marcia

Re: please help!

Hi ~ We went through the same thing with the bar. My understanding is

that this is normal.... It has been two weeks for us and my daughter,

Maddie, is sleeping about 5-6 hours at night. I should tell you that she had

been sleeping about 7-8 hours, so we are still not back there. The first

three nights were AWFUL! I too did not sleep!!! She would only sleep when I

was holding her. I did find one thing that gave me a break during the first

few days... After he doses off, try to put him in his swing with a little

music. Maddie likes Baby Mozart.

As for the degree of rotation, that is the same problem we are having now!

Maddie has BCF and we are only at 50 degrees. We go today for a second

opinion with a Ponseti doctor. There are others on the board that know a lot

more about this, so I am sure you will get some advice. Good Luck!!!

Kim

>

> Please help...Vinnie got his DBB and shoes yesterday and it has been a

> nightmare. I have already had to put them on again 4 or 5 times and I

> have had no sleep for 24 hours now. He has been sleeping VERY lightly

> and will absolutely not fall asleep unless he is being held. Is this

> normal? -kelly :o)

> PS...I noticed both shoes are set at 45 degrees. I thought I remember

> reading something else. He only has LCF but I thought the clubfoot

> should be 70 and the other one 40???????

>

>

>

>

>

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