Update

[Guest guest]

Thanks denise ! I am sooooo ready......

Angie

[Guest guest]

It is going to be ssoooo awesome when they do come out. My twins were the

best thing that ever happened to me. A MIRACLE too

God Bless,

Robin, NorthEastern, NY

EDD- July 27th, 2004

IT'S A BOY!!!!!!

Mommy to:

&

(twin boys 7 1/2),

Madison, daughter, 5 years and

Wife to Pup 15 years (October 31, 1988)

Gastric Bypass Surgery-

October 18th 2002

Start-378, current- 246(pregnant)

goal 170 after baby

[Guest guest]

I am excited and ready for them..... I didnt think I'd make it to my 35th

week with them.....

How far did u carry your boys? And what was their birth weight? My doc says

he wants them to get alittle fluffier! LOL I thought 5 lbs was good for twins.

Angie

[Guest guest]

Angie,

I'm a twin and when my Mom was pregnant with us it was back when they didn't

have ultrasounds, they x-rayed when you were in labor. All through her

pregnancy they kept telling her she wasn't having twins and had her on very

restrictive diets because they thought she was gaining way too much weight

(60lbs total). Well, I came out 6lbs 4oz and my sis was 4lbs 14ozs. From

pictures and what my Mom told me they were totally happy with my size, but my

sis, ugh! She looked all skin and bones and to make it worse she was totally

bald whereas I had hair.

Point is you need to realize that their estimates for weight may be off by as

much as a pound so your little guys could be as small as 4 and as large as 6 and

those couple of lbs can make all the difference.

Axelrod

Re: Update

I am excited and ready for them..... I didnt think I'd make it to my 35th

week with them.....

How far did u carry your boys? And what was their birth weight? My doc says

he wants them to get alittle fluffier! LOL I thought 5 lbs was good for twins.

Angie

[Guest guest]

Laurie,

This sounds promising except I wish you didn't have to deal with it at all. I

guess you'll know more after the CT scan. I wouldn't be looking forward to the

treadmill testing. That's not one I could do. I guess you probably feel a

little better after this appointment, don't you?

Alice

I saw the pulmonologist that my neuro wanted me to see. In looking at my CT

films, he feels the scaring in my lungs was minor and probably due to the

mito. He ordered a lung specific CT that will be done both on my back and on

my stomach. I also will have a pre and post 6 min. treadmill pulmonary

function test and then see him. It probably won't be for a couple of months.

laurie

[Guest guest]

---Good news and bad news at the same time! I am glad to hear the

fibrosis is minor!

Best WIshes,

Dawn

In , Laureta Fitzgerald

wrote:

> Hi

>

> I saw the pulmonologist that my neuro wanted me to see. In looking

at my CT

> films, he feels the scaring in my lungs was minor and probably due

to the

> mito. He ordered a lung specific CT that will be done both on my

back and on

> my stomach. I also will have a pre and post 6 min. treadmill

pulmonary

> function test and then see him. It probably won't be for a couple

of months.

>

> laurie

[Guest guest]

Thanks Dawn!

>

> Reply-To:

> Date: Wed, 10 Nov 2004 04:37:48 -0000

> To:

> Subject: Re: update

>

>

> ---Good news and bad news at the same time! I am glad to hear the

> fibrosis is minor!

>

> Best WIshes,

>

> Dawn

>

>

>

> In , Laureta Fitzgerald

> wrote:

>> Hi

>>

>> I saw the pulmonologist that my neuro wanted me to see. In looking

> at my CT

>> films, he feels the scaring in my lungs was minor and probably due

> to the

>> mito. He ordered a lung specific CT that will be done both on my

> back and on

>> my stomach. I also will have a pre and post 6 min. treadmill

> pulmonary

>> function test and then see him. It probably won't be for a couple

> of months.

>>

>> laurie

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Alice

I feel better that it is minor, but was hoping to know more after the

appointment. I am not looking forward to the treadmill. My guess is that I

will make it about 2 minutes and have to stop, but it might be one of my

better days - who knows.

laurie

>

> Reply-To:

> Date: Tue, 9 Nov 2004 20:39:04 -0700

> To: >

> Subject: Re: update

>

> Laurie,

>

> This sounds promising except I wish you didn't have to deal with it at all. I

> guess you'll know more after the CT scan. I wouldn't be looking forward to

> the treadmill testing. That's not one I could do. I guess you probably feel a

> little better after this appointment, don't you?

>

> Alice

>

> I saw the pulmonologist that my neuro wanted me to see. In looking at my CT

> films, he feels the scaring in my lungs was minor and probably due to the

> mito. He ordered a lung specific CT that will be done both on my back and on

> my stomach. I also will have a pre and post 6 min. treadmill pulmonary

> function test and then see him. It probably won't be for a couple of months.

>

> laurie

>

>

>

>

[Guest guest]

I hope this news on the lungs is reassuring. Treadmill should be

fun....ugh. I have " fond " memories. From '83-'88 my son and I did

treadmills for a long-term research protocol. I could do 5 minutes

in '83, 2 minutes by '88. This was at the slowest speed with no

incline. Maybe they will take pity on you and cancel? The last time

a cardiologist ordered a treadmill--this was 1990--the tech took one

look at me, called the doc and said, " This woman cannot get on a

treadmill. " Saved!

B

> Alice

>

> I feel better that it is minor, but was hoping to know more after

the

> appointment. I am not looking forward to the treadmill. My guess

is that I

> will make it about 2 minutes and have to stop, but it might be one

of my

> better days - who knows.

>

> laurie

>

> > From: " A ADAMS "

> > Reply-To:

> > Date: Tue, 9 Nov 2004 20:39:04 -0700

> > To: >

> > Subject: Re: update

> >

> > Laurie,

> >

> > This sounds promising except I wish you didn't have to deal with

it at all. I

> > guess you'll know more after the CT scan. I wouldn't be looking

forward to

> > the treadmill testing. That's not one I could do. I guess you

probably feel a

> > little better after this appointment, don't you?

> >

> > Alice

> >

> > I saw the pulmonologist that my neuro wanted me to see. In

looking at my CT

> > films, he feels the scaring in my lungs was minor and probably

due to the

> > mito. He ordered a lung specific CT that will be done both on my

back and on

> > my stomach. I also will have a pre and post 6 min. treadmill

pulmonary

> > function test and then see him. It probably won't be for a

couple of months.

> >

> > laurie

> >

> >

> >

> >

[Guest guest]

Dear Adrienne,

I am so glad to have met you at the UMDF conference. Your posts have

much more resonance now that I know you.

I am so sorry that you are on this very, very long mito treadmill. Maybe

some new docs will have some new solutions. I remember that my long-term

endocrinologist told me once that he worried that he could miss

something since he knew me so very well. It is a paradox, isn't it?

Please keep us as up-to-date as possible. I know truly that we are

closer than some families, here on Mitoldies!

I hope your tests are not too rigorous, and that you will get the help

you need---soon.

Please take care, Adrienne.

Sincerely,

S.

[Guest guest]

Dear Adrienne,

I am so glad to have met you at the UMDF conference. Your posts have

much more resonance now that I know you.

I am so sorry that you are on this very, very long mito treadmill. Maybe

some new docs will have some new solutions. I remember that my long-term

endocrinologist told me once that he worried that he could miss

something since he knew me so very well. It is a paradox, isn't it?

Please keep us as up-to-date as possible. I know truly that we are

closer than some families, here on Mitoldies!

I hope your tests are not too rigorous, and that you will get the help

you need---soon.

Please take care, Adrienne.

Sincerely,

S.

[Guest guest]

Adrienne,

I'm glad at least you're feeling up to posting - but wish you

weren't having so many problems. Your new internist sounds

promising - maybe he can figure something out for you.

It must be very difficult to think about starting all over with

tests, but maybe it's time to approach your case with a fresh look.

I'll be thinking of you and hoping for best. You have been through

so much. Best of luck.

Maggie

>

> hi guys,

> thought I would update you all on how I was doing. I continue to

have

> alot of problems- neuro (seizures- though not as much lately since

my

> seizure meds have been upped but still not as controlled as id

like,

> SLEs/migraines have increased, etc), GI dysmotility is at its

worse

> in awhile I'm on a liquid diet right now with ensure, etc and even

> having problems tolerating it (solids and semisolids made me be so

> nauseous, bloated, in alot of pain/burning, etc, couldnt eat at

all,

> at least the liquids make the symptoms barable along with being on

> meds to help- zofran etc). I'm getting both an endoscopy and

> colonoscopy on the 24th and the dr is also doing the endoscopic

> ultrasound to check out my pancreas and bile ducts to make sure my

> symptoms are being aggravated more by pancreatitis and/or

gallstones

> in my bile ducts (gallbladder is gone). The prep the day before is

> what im really not looking forward to, especially with swallowing

> issues. This is a new GI dr so he is starting all over with tests.

> I've lost about 15 lbs in the past month so if I continue we might

> look into other options other than the liquid diet (G/J tube or

TPN

> has both been suggested depending on what is found).

> I also get my PICC line out and my broviac line in on the

19th.

> It is helping at least getting fluids daily, that and the florinef

> has helped a good bit with some of my autonomic dysfunction (low

> blood pressure and tachycardia and dizzy spells, etc). I saw Dr.

> Greene thurs. one of the drs I see for mito and she wants to add

IV

> carnitor now but says we are gonna wait till after the broviac is

> placed and see what the GI wants to add also and see what the

blood

> tests show that she did (she might add more things too-

electrolytes,

> nutrients, etc.)

> I also have to get extensive dental work done tues and am

going

> on anesthesia for that too, then seeing my pain management dr

about a

> possibly pain pump because my pain is so severe now and the oral

meds

> i cant tolerate but IV meds dont seem to bother me as much. Also

> seeing a new urologist on thursday because my urology symptoms are

> getting very bad with rentention, pain and frequency (have the

> diagnosises of neurogenic bladder due to mito and dysautonomia and

> also interstitial cystitis and frequent UTIs). I have to find time

> sometime to actually measure my urine output and fluid intake for

24

> hrs (even though my fluid intake is basically IV and on basically

a

> liquid diet lol- but got to do that either tomorrow on monday,

ugh)

> I just cant wait for all of this to settle down, it never

seems

> to. Then I have to go to a new neurologist that my mito dr wants

me

> to see that she recently found out about because my old one

basically

> gave up on me, so that means more tests, especially since the mito

dr

> found new abnormalities in my neuro examination this time (she

> basically said im showing more weakness on one side, more

> coordination probs, ataxia, and hyperreflexia, rigity with tremors

on

> the other side.) I am also going to a new internist that did a

> fellowship in genetics in mid december so I dont know what he will

> want to do either. I'm just hoping that by the new year maybe

things

> will settle down some!

> Anyways, it also seems my poor mom is getting more and more

> mito symptoms too, I might have her join here if she can get used

to

> this (she doesnt know too much about the email groups, etc). She

is

> being tested for dysautonomia and she just seems to have alot of

> those symptoms along with the exercize intolerance and muscle

> symptoms, GI symptoms, fatigue, etc. I hate seeing her go through

> this too. I just hope my brother never gets any more problems than

he

> has now (hes got extreme emotional and behavioral problems and

cant

> deal with much more- he has some soft physical symptoms, GI

problems

> and mild exercize intolerance and some other mild issues- he had

more

> problems as a kid and they got better so i hope it just stays that

> way).

> anyways, im done with my vent here guys, just needed to

get

> this out. I really miss being active in this group like i used to

and

> hope to again soon but i know you all understand and know that

other

> have been or some are in the same position. I do think of everyone

> daily and hope that those of you not feeling well or with family

> members not doing well start to do well soon and those doing

better

> continue to do well. I'll keep yall posted on how things go or

> somehow get my mom to since I'm probably going to be exausted

after

> everything going on till thanksgiving, just trying to relax this

> weekend. Ok, I know I'm known for these long posts, at least this

one

> has paragraphs, even if they arent correctly done lol. Anyways,

> thinking of you all and praying.

> take care,

> Adrienne

[Guest guest]

Adrienne,

I'm glad at least you're feeling up to posting - but wish you

weren't having so many problems. Your new internist sounds

promising - maybe he can figure something out for you.

It must be very difficult to think about starting all over with

tests, but maybe it's time to approach your case with a fresh look.

I'll be thinking of you and hoping for best. You have been through

so much. Best of luck.

Maggie

>

> hi guys,

> thought I would update you all on how I was doing. I continue to

have

> alot of problems- neuro (seizures- though not as much lately since

my

> seizure meds have been upped but still not as controlled as id

like,

> SLEs/migraines have increased, etc), GI dysmotility is at its

worse

> in awhile I'm on a liquid diet right now with ensure, etc and even

> having problems tolerating it (solids and semisolids made me be so

> nauseous, bloated, in alot of pain/burning, etc, couldnt eat at

all,

> at least the liquids make the symptoms barable along with being on

> meds to help- zofran etc). I'm getting both an endoscopy and

> colonoscopy on the 24th and the dr is also doing the endoscopic

> ultrasound to check out my pancreas and bile ducts to make sure my

> symptoms are being aggravated more by pancreatitis and/or

gallstones

> in my bile ducts (gallbladder is gone). The prep the day before is

> what im really not looking forward to, especially with swallowing

> issues. This is a new GI dr so he is starting all over with tests.

> I've lost about 15 lbs in the past month so if I continue we might

> look into other options other than the liquid diet (G/J tube or

TPN

> has both been suggested depending on what is found).

> I also get my PICC line out and my broviac line in on the

19th.

> It is helping at least getting fluids daily, that and the florinef

> has helped a good bit with some of my autonomic dysfunction (low

> blood pressure and tachycardia and dizzy spells, etc). I saw Dr.

> Greene thurs. one of the drs I see for mito and she wants to add

IV

> carnitor now but says we are gonna wait till after the broviac is

> placed and see what the GI wants to add also and see what the

blood

> tests show that she did (she might add more things too-

electrolytes,

> nutrients, etc.)

> I also have to get extensive dental work done tues and am

going

> on anesthesia for that too, then seeing my pain management dr

about a

> possibly pain pump because my pain is so severe now and the oral

meds

> i cant tolerate but IV meds dont seem to bother me as much. Also

> seeing a new urologist on thursday because my urology symptoms are

> getting very bad with rentention, pain and frequency (have the

> diagnosises of neurogenic bladder due to mito and dysautonomia and

> also interstitial cystitis and frequent UTIs). I have to find time

> sometime to actually measure my urine output and fluid intake for

24

> hrs (even though my fluid intake is basically IV and on basically

a

> liquid diet lol- but got to do that either tomorrow on monday,

ugh)

> I just cant wait for all of this to settle down, it never

seems

> to. Then I have to go to a new neurologist that my mito dr wants

me

> to see that she recently found out about because my old one

basically

> gave up on me, so that means more tests, especially since the mito

dr

> found new abnormalities in my neuro examination this time (she

> basically said im showing more weakness on one side, more

> coordination probs, ataxia, and hyperreflexia, rigity with tremors

on

> the other side.) I am also going to a new internist that did a

> fellowship in genetics in mid december so I dont know what he will

> want to do either. I'm just hoping that by the new year maybe

things

> will settle down some!

> Anyways, it also seems my poor mom is getting more and more

> mito symptoms too, I might have her join here if she can get used

to

> this (she doesnt know too much about the email groups, etc). She

is

> being tested for dysautonomia and she just seems to have alot of

> those symptoms along with the exercize intolerance and muscle

> symptoms, GI symptoms, fatigue, etc. I hate seeing her go through

> this too. I just hope my brother never gets any more problems than

he

> has now (hes got extreme emotional and behavioral problems and

cant

> deal with much more- he has some soft physical symptoms, GI

problems

> and mild exercize intolerance and some other mild issues- he had

more

> problems as a kid and they got better so i hope it just stays that

> way).

> anyways, im done with my vent here guys, just needed to

get

> this out. I really miss being active in this group like i used to

and

> hope to again soon but i know you all understand and know that

other

> have been or some are in the same position. I do think of everyone

> daily and hope that those of you not feeling well or with family

> members not doing well start to do well soon and those doing

better

> continue to do well. I'll keep yall posted on how things go or

> somehow get my mom to since I'm probably going to be exausted

after

> everything going on till thanksgiving, just trying to relax this

> weekend. Ok, I know I'm known for these long posts, at least this

one

> has paragraphs, even if they arent correctly done lol. Anyways,

> thinking of you all and praying.

> take care,

> Adrienne

[Guest guest]

Adrienne, Glad to see this update. I have been wondering how things

are going with you. Interesting that you mentioned Florinef...I may

ask my neuro about this again. A couple of years ago they had wanted

me to try it, but at the time symptoms were so unstable that I was

concerned about experimenting with yet another drug. Now I wonder if

it might not help me with autonomic stuff as it has you, as that

group of symptoms are getting worse. Anyway, tks for posting. I hope

you get some help with the GI issues. The j-tube was definitely a

good decision for me.

Take care,

Barbara

>

> hi guys,

> thought I would update you all on how I was doing. I continue to

have

> alot of problems- neuro (seizures- though not as much lately since

my

> seizure meds have been upped but still not as controlled as id

like,

> SLEs/migraines have increased, etc), GI dysmotility is at its

worse

> in awhile I'm on a liquid diet right now with ensure, etc and even

> having problems tolerating it (solids and semisolids made me be so

> nauseous, bloated, in alot of pain/burning, etc, couldnt eat at

all,

> at least the liquids make the symptoms barable along with being on

> meds to help- zofran etc). I'm getting both an endoscopy and

> colonoscopy on the 24th and the dr is also doing the endoscopic

> ultrasound to check out my pancreas and bile ducts to make sure my

> symptoms are being aggravated more by pancreatitis and/or

gallstones

> in my bile ducts (gallbladder is gone). The prep the day before is

> what im really not looking forward to, especially with swallowing

> issues. This is a new GI dr so he is starting all over with tests.

> I've lost about 15 lbs in the past month so if I continue we might

> look into other options other than the liquid diet (G/J tube or

TPN

> has both been suggested depending on what is found).

> I also get my PICC line out and my broviac line in on the

19th.

> It is helping at least getting fluids daily, that and the florinef

> has helped a good bit with some of my autonomic dysfunction (low

> blood pressure and tachycardia and dizzy spells, etc). I saw Dr.

> Greene thurs. one of the drs I see for mito and she wants to add

IV

> carnitor now but says we are gonna wait till after the broviac is

> placed and see what the GI wants to add also and see what the

blood

> tests show that she did (she might add more things too-

electrolytes,

> nutrients, etc.)

> I also have to get extensive dental work done tues and am

going

> on anesthesia for that too, then seeing my pain management dr

about a

> possibly pain pump because my pain is so severe now and the oral

meds

> i cant tolerate but IV meds dont seem to bother me as much. Also

> seeing a new urologist on thursday because my urology symptoms are

> getting very bad with rentention, pain and frequency (have the

> diagnosises of neurogenic bladder due to mito and dysautonomia and

> also interstitial cystitis and frequent UTIs). I have to find time

> sometime to actually measure my urine output and fluid intake for

24

> hrs (even though my fluid intake is basically IV and on basically

a

> liquid diet lol- but got to do that either tomorrow on monday,

ugh)

> I just cant wait for all of this to settle down, it never

seems

> to. Then I have to go to a new neurologist that my mito dr wants

me

> to see that she recently found out about because my old one

basically

> gave up on me, so that means more tests, especially since the mito

dr

> found new abnormalities in my neuro examination this time (she

> basically said im showing more weakness on one side, more

> coordination probs, ataxia, and hyperreflexia, rigity with tremors

on

> the other side.) I am also going to a new internist that did a

> fellowship in genetics in mid december so I dont know what he will

> want to do either. I'm just hoping that by the new year maybe

things

> will settle down some!

> Anyways, it also seems my poor mom is getting more and more

> mito symptoms too, I might have her join here if she can get used

to

> this (she doesnt know too much about the email groups, etc). She

is

> being tested for dysautonomia and she just seems to have alot of

> those symptoms along with the exercize intolerance and muscle

> symptoms, GI symptoms, fatigue, etc. I hate seeing her go through

> this too. I just hope my brother never gets any more problems than

he

> has now (hes got extreme emotional and behavioral problems and

cant

> deal with much more- he has some soft physical symptoms, GI

problems

> and mild exercize intolerance and some other mild issues- he had

more

> problems as a kid and they got better so i hope it just stays that

> way).

> anyways, im done with my vent here guys, just needed to

get

> this out. I really miss being active in this group like i used to

and

> hope to again soon but i know you all understand and know that

other

> have been or some are in the same position. I do think of everyone

> daily and hope that those of you not feeling well or with family

> members not doing well start to do well soon and those doing

better

> continue to do well. I'll keep yall posted on how things go or

> somehow get my mom to since I'm probably going to be exausted

after

> everything going on till thanksgiving, just trying to relax this

> weekend. Ok, I know I'm known for these long posts, at least this

one

> has paragraphs, even if they arent correctly done lol. Anyways,

> thinking of you all and praying.

> take care,

> Adrienne

[Guest guest]

Barbara

I don't think I will make it to 6 minutes, but who knows. I know I am not

looking forward to it and will probably ask my son and daughter-in-law to

pick me up. I'm sure I will be any shape to drive an hour home.

laurie

>

> Reply-To:

> Date: Wed, 10 Nov 2004 15:18:33 -0000

> To:

> Subject: Re: update

>

>

> I hope this news on the lungs is reassuring. Treadmill should be

> fun....ugh. I have " fond " memories. From '83-'88 my son and I did

> treadmills for a long-term research protocol. I could do 5 minutes

> in '83, 2 minutes by '88. This was at the slowest speed with no

> incline. Maybe they will take pity on you and cancel? The last time

> a cardiologist ordered a treadmill--this was 1990--the tech took one

> look at me, called the doc and said, " This woman cannot get on a

> treadmill. " Saved!

>

> B

>

>

>

>

>> Alice

>>

>> I feel better that it is minor, but was hoping to know more after

> the

>> appointment. I am not looking forward to the treadmill. My guess

> is that I

>> will make it about 2 minutes and have to stop, but it might be one

> of my

>> better days - who knows.

>>

>> laurie

>>

>>> From: " A ADAMS "

>>> Reply-To:

>>> Date: Tue, 9 Nov 2004 20:39:04 -0700

>>> To: >

>>> Subject: Re: update

>>>

>>> Laurie,

>>>

>>> This sounds promising except I wish you didn't have to deal with

> it at all. I

>>> guess you'll know more after the CT scan. I wouldn't be looking

> forward to

>>> the treadmill testing. That's not one I could do. I guess you

> probably feel a

>>> little better after this appointment, don't you?

>>>

>>> Alice

>>>

>>> I saw the pulmonologist that my neuro wanted me to see. In

> looking at my CT

>>> films, he feels the scaring in my lungs was minor and probably

> due to the

>>> mito. He ordered a lung specific CT that will be done both on my

> back and on

>>> my stomach. I also will have a pre and post 6 min. treadmill

> pulmonary

>>> function test and then see him. It probably won't be for a

> couple of months.

>>>

>>> laurie

>>>

>>>

>>>

>>>

[Guest guest]

Barbara

I don't think I will make it to 6 minutes, but who knows. I know I am not

looking forward to it and will probably ask my son and daughter-in-law to

pick me up. I'm sure I will be any shape to drive an hour home.

laurie

>

> Reply-To:

> Date: Wed, 10 Nov 2004 15:18:33 -0000

> To:

> Subject: Re: update

>

>

> I hope this news on the lungs is reassuring. Treadmill should be

> fun....ugh. I have " fond " memories. From '83-'88 my son and I did

> treadmills for a long-term research protocol. I could do 5 minutes

> in '83, 2 minutes by '88. This was at the slowest speed with no

> incline. Maybe they will take pity on you and cancel? The last time

> a cardiologist ordered a treadmill--this was 1990--the tech took one

> look at me, called the doc and said, " This woman cannot get on a

> treadmill. " Saved!

>

> B

>

>

>

>

>> Alice

>>

>> I feel better that it is minor, but was hoping to know more after

> the

>> appointment. I am not looking forward to the treadmill. My guess

> is that I

>> will make it about 2 minutes and have to stop, but it might be one

> of my

>> better days - who knows.

>>

>> laurie

>>

>>> From: " A ADAMS "

>>> Reply-To:

>>> Date: Tue, 9 Nov 2004 20:39:04 -0700

>>> To: >

>>> Subject: Re: update

>>>

>>> Laurie,

>>>

>>> This sounds promising except I wish you didn't have to deal with

> it at all. I

>>> guess you'll know more after the CT scan. I wouldn't be looking

> forward to

>>> the treadmill testing. That's not one I could do. I guess you

> probably feel a

>>> little better after this appointment, don't you?

>>>

>>> Alice

>>>

>>> I saw the pulmonologist that my neuro wanted me to see. In

> looking at my CT

>>> films, he feels the scaring in my lungs was minor and probably

> due to the

>>> mito. He ordered a lung specific CT that will be done both on my

> back and on

>>> my stomach. I also will have a pre and post 6 min. treadmill

> pulmonary

>>> function test and then see him. It probably won't be for a

> couple of months.

>>>

>>> laurie

>>>

>>>

>>>

>>>

[Guest guest]

a and Malissa, thanks so much for the updates.

B

_____

From: a C Koch

Sent: Saturday, January 15, 2005 1:01 PM

To:

Subject: update

Hi all! I know Malisa is doing a great job at keeping everyone updated

on , as she is in contact with her mother. asked me to

let you know every time I saw an update from her sister. This is what

Ashlee had to say on 's website:

had a pretty ruff time in recovery and over night. She is

still in a lot of pain. They want her to get up and get in a chair today.

She still has the epidural and catheter in but we think she doesn't get a

lot a through the epidural or she wouldn't feel her legs to get up. At

this point I want her to not feel her legs so she can be comfortable and

rest. Her little body is so tired. She looked so peaceful and beautiful

like an angel yesterday when I got see her coming out of anesthesia. She

is the toughest, bravest, most awesome girl I know, and I am so very

proud to call her my friend and have her as my sister. Please all

continue to pray for the pain to go away and for her to heal. I will try

to update again as soon as I can.

I know and her whole family appreciate all the thoughts that are

being sent her way. She is such a strong person and has gone through so

much.

Smiles,

a

[Guest guest]

a

Thanks.

laurie

>

> Reply-To:

> Date: Sat, 15 Jan 2005 13:01:27 -0600

> To:

> Subject: update

>

> Hi all! I know Malisa is doing a great job at keeping everyone updated

> on , as she is in contact with her mother. asked me to

> let you know every time I saw an update from her sister. This is what

> Ashlee had to say on 's website:

>

> had a pretty ruff time in recovery and over night. She is

> still in a lot of pain. They want her to get up and get in a chair today.

> She still has the epidural and catheter in but we think she doesn't get a

> lot a through the epidural or she wouldn't feel her legs to get up. At

> this point I want her to not feel her legs so she can be comfortable and

> rest. Her little body is so tired. She looked so peaceful and beautiful

> like an angel yesterday when I got see her coming out of anesthesia. She

> is the toughest, bravest, most awesome girl I know, and I am so very

> proud to call her my friend and have her as my sister. Please all

> continue to pray for the pain to go away and for her to heal. I will try

> to update again as soon as I can.

>

> I know and her whole family appreciate all the thoughts that are

> being sent her way. She is such a strong person and has gone through so

> much.

> Smiles,

> a

>

>

[Guest guest]

a,

HI! Hon how are YOU doing? I need to a call you soon! I wiil try

tomorrow afternoon. Thanks for the post on Alison. Can you send us

her website. I would love to see it and keep up with the posts about

her healing.

Hugs and Smiles,

Chrsitine

> a

>

> Thanks.

>

> laurie

>

> > From: a C Koch

> > Reply-To:

> > Date: Sat, 15 Jan 2005 13:01:27 -0600

> > To:

> > Subject: update

> >

> > Hi all! I know Malisa is doing a great job at keeping everyone

updated

> > on , as she is in contact with her mother. asked

me to

> > let you know every time I saw an update from her sister. This is

what

> > Ashlee had to say on 's website:

> >

> > had a pretty ruff time in recovery and over night. She is

> > still in a lot of pain. They want her to get up and get in a

chair today.

> > She still has the epidural and catheter in but we think she

doesn't get a

> > lot a through the epidural or she wouldn't feel her legs to get

up. At

> > this point I want her to not feel her legs so she can be

comfortable and

> > rest. Her little body is so tired. She looked so peaceful and

beautiful

> > like an angel yesterday when I got see her coming out of

anesthesia. She

> > is the toughest, bravest, most awesome girl I know, and I am so

very

> > proud to call her my friend and have her as my sister. Please all

> > continue to pray for the pain to go away and for her to heal. I

will try

> > to update again as soon as I can.

> >

> > I know and her whole family appreciate all the thoughts

that are

> > being sent her way. She is such a strong person and has gone

through so

> > much.

> > Smiles,

> > a

> >

> >

[Guest guest]

a,

Thanks for the update on . I have been thinkng of her often

and hoping that the pain has lessened and that she is at RMH. I have

stayed there about 6 times the past 6 yrs. They are wonderful and

they truly care about the patients and families. I love how they have

animals that come and visit and the local residents are so willing to

help. We have had a driver named Captain Dennis take us back and

forth to the airport and around town when we have been in Cleveland.

He is the best and I am totally comfortable traveling with him, even

as a woman alone or with a child. He is a Blessing that I am sure of.

> This was sent from 's sister on Friday:

>

> was released from the hospital late this afternoon. We are

all

> now at the RMH. continues to experience significant pain in

your

> abodomen and lower back. She is very swollen and uncomfortable. The

pain

> management doc's had nothing to offer her. She was tried on many

> different pain meds. They have sent her home with Fentanyl

lollipops, but

> they really sedate her. Please continue to pray for as she

faces

> a long recovery and ease from the pain. They are forecasting a

blizzard

> for Cleveland tonight, so we are uncertain as to when we will be

able to

> fly home.

>

> " Big SIS Ash "

>

> I am sure with all the snow, it might be awhile before planes

leave. I

> am not sure what it is like in Cleveland, if they got ice along

with the

> snow but know what it is like in Iowa and we certainly did!

> Smiles,

> a

>

>

[Guest guest]

a

Thanks for the update.

I hope you can stay in with your bad weather. We got all snow and wind, but

no ice. They were predicting that for tonight and tomorrow night, but have

now changed the forecast to snow showers. I'd rather have the snow.

I was thinking that we might have a snow day tomorrow, but I really need

every day to get things in place - only two weeks to go.

Stay safe and warm,

laurie

>

> Reply-To:

> Date: Sun, 23 Jan 2005 10:31:45 -0600

> To:

> Subject: Update

>

> This was sent from 's sister on Friday:

>

> was released from the hospital late this afternoon. We are all

> now at the RMH. continues to experience significant pain in your

> abodomen and lower back. She is very swollen and uncomfortable. The pain

> management doc's had nothing to offer her. She was tried on many

> different pain meds. They have sent her home with Fentanyl lollipops, but

> they really sedate her. Please continue to pray for as she faces

> a long recovery and ease from the pain. They are forecasting a blizzard

> for Cleveland tonight, so we are uncertain as to when we will be able to

> fly home.

>

> " Big SIS Ash "

>

> I am sure with all the snow, it might be awhile before planes leave. I

> am not sure what it is like in Cleveland, if they got ice along with the

> snow but know what it is like in Iowa and we certainly did!

> Smiles,

> a

>

>

[Guest guest]

Thanks for the update. Please send my love to and I'll keep

her in my thoughts for some relief from the pain and a comfortable

recovery. It sounds as if she should stay right where she is.

The snow and cold in the NE is awful. I keep watching the Weather

Channel shaking my head and thinking what a mess I could be in. It

is supposed to be 65 degrees here on Tuesday and for the last few

days - it has been in the upper 50's . What a difference!

Keep warm and dry everyone. I'm a little worried about Trish who I

haven't heard from in a while. She's on the Cape and it would be

very bad if she lost power. I'll try to give her a call later today.

Alice

[Guest guest]

If you get a hold of Trish, please give her my love.

Alice wrote:

>Thanks for the update. Please send my love to and I'll keep

>her in my thoughts for some relief from the pain and a comfortable

>recovery. It sounds as if she should stay right where she is.

>

>The snow and cold in the NE is awful. I keep watching the Weather

>Channel shaking my head and thinking what a mess I could be in. It

>is supposed to be 65 degrees here on Tuesday and for the last few

>days - it has been in the upper 50's . What a difference!

>

>Keep warm and dry everyone. I'm a little worried about Trish who I

>haven't heard from in a while. She's on the Cape and it would be

>very bad if she lost power. I'll try to give her a call later today.

>

>Alice

>

>

>

>

>

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Thanks Barbara.

[Guest guest]

, I am praying with a capital P!

B

_____

From: LILQT4U1984@...

Sent: Wednesday, February 23, 2005 2:23 PM

To: Moonchild62579@...; allyson.l.sisler@...; Utbrn@...;

PaddockSwim9098@...; go.shirl@...; Catbecca83@...;

SheDeKold@...; denise.lappan@...; anne02@...;

Adia003509@...; Traci1175@...; heatheres@...;

Hollyorn@...; IMJANER2@...; kckoch76@...;

kate@...; Malnic2185@...; Lillian@...;

rosefarm@...; Marta608@...; peetie@...;

thefourofus03@...; lindseyn18@...; bethb48@...;

digby@...; daniellecoccinelle@...;

roseschussler@...; aaschwenk@...; Staceyje@...;

PJS3067198@...; laurice_stevens@...; HiyaChica@...;

tpnsupport ; LEMT13@...; JenRWaterman85@...;

Subject: Update

Confusion is the word of the day.

Made numerous phone calls yesterday to Cleveland, Cincinnati and to my PCP.

Doing everything in our power to get answers and get the appt moved up for

Cincy. It came down to if a doc. called and spoke to the doc at Cincy then

the

appt could be moved up, but that was the ONLY way. Called my PCP, and mito

doc. and asked both to please call and as far as I know neither have done

so.

My sis is going to Cincy tom for work and would be more than glad to have

us

along for company. It just seemed like the perfect plan, but no doors are

opening for this to happen.

Then today the surgeon called. It was from prodding from my PCP but he DID

call. He said that the total colectomy with IRA could be done but not

laprascopic. He said it was just too dangerous as I have scar tissue from

the first

surgery, had my rectum removed and recontructed with my transverse colon,

and

it's hard for young people to recover from the laprascopic because of the

carbon dioxide used to inflate the abdomen. All in all he said it's my

decision

and he will do as I wish, but he still would like for me to do the

appendacostomy first. He said I would have 3-4 BM's a day after a total

colectomy and

is afraid that I would end up reverting to an ileostomy and he doesn't want

that for me. I think 3x a day would be great. Then I could eat really well

3x a

day. That doesn't sound awful or unreasonable to me. Ultimately I have this

huge decision to make again and have no idea what to do. I had wanted to

get

a second opinion from Cincy but don't feel like I can wait a month for that

appt when I'm feeling so miserable and continuing to lose weight. The

colectomy with IRA would be like having the exact same surgery I've had

done all over

again. It would involve opening up the same incision, a foley, pain and

long

hospital and recovery time. At least (I think/hope/pray) that there would

be

good at the end of this surgery.

UPDATE- while I was typing this my mom got intouch with my mito doc. and is

calling the GI at Cincy NOW. This is going to be my answer. If Cincy can

see

me this week I'm going there, if not then I'm going to Cleveland for

surgery

next week. I guess I will be missing my 21st Birthday either route I go.

Something tends to happen nearly every year right around this time. Mom says

I

should start packing as we are most likely going somewhere very soon.

My mind is just spinning and my tummy is in a knot. Please God open the

doors and lead me in.

Thanks for your prayers and thanks for being so supportive!!