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Oh, Ken, I can just imagine the stress relief for you and your family! Does

anyone have any idea what would cause the fracture from the inside out? S.

Update

Saw the Rheumatologist who wasn't impressed with any of the labs (good

thing), and brought the films down to pediatric radiology department at St.

Chris. Interpretation was a stress fracture though baffled by the fact that

couldn't see anything whatsoever with the bone x-rays. After lunch, had the MRI

which demonstrated a stress fracture beginning from within the marrow space

rather than the other way around. Cancelled the ortho consult at CHOP as no need

for biopsy and saw a local ortho who put in a cast. Though still don't

have an answer for the general symptoms, will put that on the back burner for

now and let his docs figure out what to do next rather than " playing doc "

myself.

Thanks for all your prayers and thoughts, REALLY HELPED. was

surprised to hear that so many people around the world know who he is!

Ken

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  • 9 months later...

Hi Everyone!

Just wanted to give you an update on what has been happening.

I had an internist appt. last Tuesday. I am having a very very difficult time

breathing and must use my oxygen all day long now. I can' t seem to take deep

breaths and it is very hard for me to breathe. I take very short shallow

quick breaths and cannot get enough oxygen. My legs and ankles are very very

swollen and my blood pressure is quite high....150/100. It is usually 117/70

or 120/80. The high blood pressure is still high even though I do take a high

blood pressure med....tenormin.

She kind of scared me a little and told me she is looking for blood clots

since I also take estrogen and she is concerned. She took some extensive

blood tests and then may do some other test for the blood clots, but will let

me know. She also wants me to see a cardiologist. She gave me a diruetic to

try to get rid of this fluid and to see if it will lower my blood

pressure....if it doesn't work then she is going to increase my blood pressure

med again. She is the doctor that sometimes has an emotional problem and

doesn't seem to communicate well with me, but yesterday, I must say, she was

very nice and knew I was struggling to breathe. I met the doctor who was on

call for her the night before......( had to call Mass Gen at 11:00 p.m. at

night. A local EMT came to my house at 11:00 p.m. to check my blood pressure

because I told I felt really very sick and weird. My pressure at that

time was 135/100....that was high for me.) The doctor who was on call for her

was very nice and when he shook my hand.....I had the instinct feeling he just

came in to introduce himself because he really wanted to see what a mito

looked like or something. Anyway, my doctor was very nice to me and I was

very glad that she was so thorough. What really surprised me was that before

she left the room, she came over to me and grabbed my hands and held them

tightly and said, " I hope you feel better. " That meant a lot to me.

Wednesday was the clencher though. and I went to 8 yes 8 doctor's

offices!!!!!! You should have seen us.....going from office to office.....we

were really exhausted and stressed out. It was a very long day.

I made appointments with the cardiologist, an optomolagist, the sleep doctor,

tried to confirm a modified swallow barium test, made an appt. for 's

research study lung doctor, a lung doctor appointment, a neuro appt., a new

appointment with the internist, went to 's appointment for his sinus's,

and then went to the neuro genetics doctor too!!!!!!!!!!!!!!!!!! That was the

most I ever did in one day! I was so exhausted the rest of the week and

through the weekend....it was too much in one day.

My neuro genetics doctors were very nice....that's a plus.....she asked me if

I went on any of the supplements that Dr. Shoffner suggested.....riboflavin,

niacin, thiamin, carnitor, CoQ, alpha lipoic acid....and there may be some

others....I don't know. I told her that I had started alpha lipoic acid and

that it wasn't agreeing with me I thought...but that it was hard to tell

because this blood pressure and swollen ankle thing was going on at the same

time....also my hard time breathing. She wanted me to increase my

carnitor...per Dr. Shoffner....up to 10,000 mg. a day. I thought this was a

lot but she checked it and said it was correct. I currently take 660 mg. a

day.

She also said to increase my CoQ....I am on 450 mg. now and I forgot how much

she said I should take but it was in the thousands.....I really don't

remember.

Something else that happened that I was not laughing at was.......we waited 30

minutes at one point for an elevator to take us to the first

floor.......everytime the elevator opened up.....there were too many people on

it and I couldn't fit in with my chair!!!!!!! Poor ......at this point we

were punchy!!!!!!!!!!! And then out of the clear blue sky a nice doctor all

dressed up in a suit with his stethescope around his neck came walking by and

said, " Are you all right, can I help you?? " Boy did we jump at that.......and

told him we had been waiting for 30 minutes......he directed us to the service

elevators and smiled at us and disappeared......at that point......he was our

angel!

Oh the internist has ordered a nurse to come once a day to check my blood

pressure and the respiratory therapist has to come every day too to check my

saturation levels. I hope this resolves soon and I can breathe better and

all this swelling goes away!

Thanks for listening

Trish

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Keep fighting Trish! You are so strong. I wish I could say something to

take these problems away for you, but all I can do is let you know I care

and hope you get to the bottom of all this quickly so that you can be on the

mend. Remember - we have to go out to lunch as soon as the weather is

better so make them take good care of you. Let us know how you are doing

when you can.

Love,

Alice

Re: Update

>From: PRodrig995@...

>

>Hi Everyone!

>

>Just wanted to give you an update on what has been happening.

>

>I had an internist appt. last Tuesday. I am having a very very difficult

time

>breathing and must use my oxygen all day long now. I can' t seem to take

deep

>breaths and it is very hard for me to breathe. I take very short shallow

>quick breaths and cannot get enough oxygen. My legs and ankles are very

very

>swollen and my blood pressure is quite high....150/100. It is usually

117/70

>or 120/80. The high blood pressure is still high even though I do take a

high

>blood pressure med....tenormin.

>She kind of scared me a little and told me she is looking for blood clots

>since I also take estrogen and she is concerned. She took some extensive

>blood tests and then may do some other test for the blood clots, but will

let

>me know. She also wants me to see a cardiologist. She gave me a diruetic

to

>try to get rid of this fluid and to see if it will lower my blood

>pressure....if it doesn't work then she is going to increase my blood

pressure

>med again. She is the doctor that sometimes has an emotional problem and

>doesn't seem to communicate well with me, but yesterday, I must say, she

was

>very nice and knew I was struggling to breathe. I met the doctor who was

on

>call for her the night before......( had to call Mass Gen at 11:00 p.m.

at

>night. A local EMT came to my house at 11:00 p.m. to check my blood

pressure

>because I told I felt really very sick and weird. My pressure at that

>time was 135/100....that was high for me.) The doctor who was on call for

her

>was very nice and when he shook my hand.....I had the instinct feeling he

just

>came in to introduce himself because he really wanted to see what a mito

>looked like or something. Anyway, my doctor was very nice to me and I was

>very glad that she was so thorough. What really surprised me was that

before

>she left the room, she came over to me and grabbed my hands and held them

>tightly and said, " I hope you feel better. " That meant a lot to me.

>

>Wednesday was the clencher though. and I went to 8 yes 8 doctor's

>offices!!!!!! You should have seen us.....going from office to

office.....we

>were really exhausted and stressed out. It was a very long day.

>

>I made appointments with the cardiologist, an optomolagist, the sleep

doctor,

>tried to confirm a modified swallow barium test, made an appt. for 's

>research study lung doctor, a lung doctor appointment, a neuro appt., a new

>appointment with the internist, went to 's appointment for his sinus's,

>and then went to the neuro genetics doctor too!!!!!!!!!!!!!!!!!! That was

the

>most I ever did in one day! I was so exhausted the rest of the week and

>through the weekend....it was too much in one day.

>

>My neuro genetics doctors were very nice....that's a plus.....she asked me

if

>I went on any of the supplements that Dr. Shoffner

suggested.....riboflavin,

>niacin, thiamin, carnitor, CoQ, alpha lipoic acid....and there may be some

>others....I don't know. I told her that I had started alpha lipoic acid

and

>that it wasn't agreeing with me I thought...but that it was hard to tell

>because this blood pressure and swollen ankle thing was going on at the

same

>time....also my hard time breathing. She wanted me to increase my

>carnitor...per Dr. Shoffner....up to 10,000 mg. a day. I thought this was

a

>lot but she checked it and said it was correct. I currently take 660 mg. a

>day.

>

>She also said to increase my CoQ....I am on 450 mg. now and I forgot how

much

>she said I should take but it was in the thousands.....I really don't

>remember.

>

>Something else that happened that I was not laughing at was.......we waited

30

>minutes at one point for an elevator to take us to the first

>floor.......everytime the elevator opened up.....there were too many people

on

>it and I couldn't fit in with my chair!!!!!!! Poor ......at this point

we

>were punchy!!!!!!!!!!! And then out of the clear blue sky a nice doctor

all

>dressed up in a suit with his stethescope around his neck came walking by

and

>said, " Are you all right, can I help you?? " Boy did we jump at

that.......and

>told him we had been waiting for 30 minutes......he directed us to the

service

>elevators and smiled at us and disappeared......at that point......he was

our

>angel!

>

>Oh the internist has ordered a nurse to come once a day to check my blood

>pressure and the respiratory therapist has to come every day too to check

my

>saturation levels. I hope this resolves soon and I can breathe better and

>all this swelling goes away!

>

>Thanks for listening

>Trish

>

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

>We now have over 85,000 e-mail communities. Check out our new web site!

>http://www.onelist.com

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

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

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Share on other sites

Keep fighting Trish! You are so strong. I wish I could say something to

take these problems away for you, but all I can do is let you know I care

and hope you get to the bottom of all this quickly so that you can be on the

mend. Remember - we have to go out to lunch as soon as the weather is

better so make them take good care of you. Let us know how you are doing

when you can.

Love,

Alice

Re: Update

>From: PRodrig995@...

>

>Hi Everyone!

>

>Just wanted to give you an update on what has been happening.

>

>I had an internist appt. last Tuesday. I am having a very very difficult

time

>breathing and must use my oxygen all day long now. I can' t seem to take

deep

>breaths and it is very hard for me to breathe. I take very short shallow

>quick breaths and cannot get enough oxygen. My legs and ankles are very

very

>swollen and my blood pressure is quite high....150/100. It is usually

117/70

>or 120/80. The high blood pressure is still high even though I do take a

high

>blood pressure med....tenormin.

>She kind of scared me a little and told me she is looking for blood clots

>since I also take estrogen and she is concerned. She took some extensive

>blood tests and then may do some other test for the blood clots, but will

let

>me know. She also wants me to see a cardiologist. She gave me a diruetic

to

>try to get rid of this fluid and to see if it will lower my blood

>pressure....if it doesn't work then she is going to increase my blood

pressure

>med again. She is the doctor that sometimes has an emotional problem and

>doesn't seem to communicate well with me, but yesterday, I must say, she

was

>very nice and knew I was struggling to breathe. I met the doctor who was

on

>call for her the night before......( had to call Mass Gen at 11:00 p.m.

at

>night. A local EMT came to my house at 11:00 p.m. to check my blood

pressure

>because I told I felt really very sick and weird. My pressure at that

>time was 135/100....that was high for me.) The doctor who was on call for

her

>was very nice and when he shook my hand.....I had the instinct feeling he

just

>came in to introduce himself because he really wanted to see what a mito

>looked like or something. Anyway, my doctor was very nice to me and I was

>very glad that she was so thorough. What really surprised me was that

before

>she left the room, she came over to me and grabbed my hands and held them

>tightly and said, " I hope you feel better. " That meant a lot to me.

>

>Wednesday was the clencher though. and I went to 8 yes 8 doctor's

>offices!!!!!! You should have seen us.....going from office to

office.....we

>were really exhausted and stressed out. It was a very long day.

>

>I made appointments with the cardiologist, an optomolagist, the sleep

doctor,

>tried to confirm a modified swallow barium test, made an appt. for 's

>research study lung doctor, a lung doctor appointment, a neuro appt., a new

>appointment with the internist, went to 's appointment for his sinus's,

>and then went to the neuro genetics doctor too!!!!!!!!!!!!!!!!!! That was

the

>most I ever did in one day! I was so exhausted the rest of the week and

>through the weekend....it was too much in one day.

>

>My neuro genetics doctors were very nice....that's a plus.....she asked me

if

>I went on any of the supplements that Dr. Shoffner

suggested.....riboflavin,

>niacin, thiamin, carnitor, CoQ, alpha lipoic acid....and there may be some

>others....I don't know. I told her that I had started alpha lipoic acid

and

>that it wasn't agreeing with me I thought...but that it was hard to tell

>because this blood pressure and swollen ankle thing was going on at the

same

>time....also my hard time breathing. She wanted me to increase my

>carnitor...per Dr. Shoffner....up to 10,000 mg. a day. I thought this was

a

>lot but she checked it and said it was correct. I currently take 660 mg. a

>day.

>

>She also said to increase my CoQ....I am on 450 mg. now and I forgot how

much

>she said I should take but it was in the thousands.....I really don't

>remember.

>

>Something else that happened that I was not laughing at was.......we waited

30

>minutes at one point for an elevator to take us to the first

>floor.......everytime the elevator opened up.....there were too many people

on

>it and I couldn't fit in with my chair!!!!!!! Poor ......at this point

we

>were punchy!!!!!!!!!!! And then out of the clear blue sky a nice doctor

all

>dressed up in a suit with his stethescope around his neck came walking by

and

>said, " Are you all right, can I help you?? " Boy did we jump at

that.......and

>told him we had been waiting for 30 minutes......he directed us to the

service

>elevators and smiled at us and disappeared......at that point......he was

our

>angel!

>

>Oh the internist has ordered a nurse to come once a day to check my blood

>pressure and the respiratory therapist has to come every day too to check

my

>saturation levels. I hope this resolves soon and I can breathe better and

>all this swelling goes away!

>

>Thanks for listening

>Trish

>

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

>We now have over 85,000 e-mail communities. Check out our new web site!

>http://www.onelist.com

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

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

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Trish,

I am new to the list and just read your letter. I hope you feel better

too. Isn't it funny the little things that people and doctors do that

can make you feel better, and the more technical things just don't seem

to help enough?

I have a daughter, amanda, who has multiple " wrong " diagnosis - the

atypical ones, she doesn't really fit anything known at this time - and

we've done lots of blood, urine, MRIs, and eegs. To make a long story

short, one of the diagnosises the docs have kicked around is

mitochondrial, but we have not really pursued it. I imagine your story

of multiple docs, not enough help, breathing issues, and getting help

from " angels " that just sometimes appears is like hers - except you can

talk about it.

Recently amanda started taking creatine monohydrate - and actually is

doing substantially better on it - and she has been having huge

breathing and walking problems in the last 1 1/2 years - so I am so glad

we found this. I have also noticed in the past that she does better on

what seems to be deemed mitochondrial supplements - co enzyme q10,

carnitine, lipoic acid. I'm still trying to catch up on this approach.

Well, I hope you are feeling better. Take care,

, , 7, atypical retts, atypical angelmans, atypical autism

PRodrig995@... wrote:

>

> From: PRodrig995@...

>

> Hi Everyone!

>

> Just wanted to give you an update on what has been happening.

>

> I had an internist appt. last Tuesday. I am having a very very difficult time

> breathing and must use my oxygen all day long now. I can' t seem to take deep

> breaths and it is very hard for me to breathe. I take very short shallow

> quick breaths and cannot get enough oxygen. My legs and ankles are very very

> swollen and my blood pressure is quite high....150/100. It is usually 117/70

> or 120/80. The high blood pressure is still high even though I do take a high

> blood pressure med....tenormin.

> She kind of scared me a little and told me she is looking for blood clots

> since I also take estrogen and she is concerned. She took some extensive

> blood tests and then may do some other test for the blood clots, but will let

> me know. She also wants me to see a cardiologist. She gave me a diruetic to

> try to get rid of this fluid and to see if it will lower my blood

> pressure....if it doesn't work then she is going to increase my blood pressure

> med again. She is the doctor that sometimes has an emotional problem and

> doesn't seem to communicate well with me, but yesterday, I must say, she was

> very nice and knew I was struggling to breathe. I met the doctor who was on

> call for her the night before......( had to call Mass Gen at 11:00 p.m. at

> night. A local EMT came to my house at 11:00 p.m. to check my blood pressure

> because I told I felt really very sick and weird. My pressure at that

> time was 135/100....that was high for me.) The doctor who was on call for her

> was very nice and when he shook my hand.....I had the instinct feeling he just

> came in to introduce himself because he really wanted to see what a mito

> looked like or something. Anyway, my doctor was very nice to me and I was

> very glad that she was so thorough. What really surprised me was that before

> she left the room, she came over to me and grabbed my hands and held them

> tightly and said, " I hope you feel better. " That meant a lot to me.

>

> Wednesday was the clencher though. and I went to 8 yes 8 doctor's

> offices!!!!!! You should have seen us.....going from office to office.....we

> were really exhausted and stressed out. It was a very long day.

>

> I made appointments with the cardiologist, an optomolagist, the sleep doctor,

> tried to confirm a modified swallow barium test, made an appt. for 's

> research study lung doctor, a lung doctor appointment, a neuro appt., a new

> appointment with the internist, went to 's appointment for his sinus's,

> and then went to the neuro genetics doctor too!!!!!!!!!!!!!!!!!! That was the

> most I ever did in one day! I was so exhausted the rest of the week and

> through the weekend....it was too much in one day.

>

> My neuro genetics doctors were very nice....that's a plus.....she asked me if

> I went on any of the supplements that Dr. Shoffner suggested.....riboflavin,

> niacin, thiamin, carnitor, CoQ, alpha lipoic acid....and there may be some

> others....I don't know. I told her that I had started alpha lipoic acid and

> that it wasn't agreeing with me I thought...but that it was hard to tell

> because this blood pressure and swollen ankle thing was going on at the same

> time....also my hard time breathing. She wanted me to increase my

> carnitor...per Dr. Shoffner....up to 10,000 mg. a day. I thought this was a

> lot but she checked it and said it was correct. I currently take 660 mg. a

> day.

>

> She also said to increase my CoQ....I am on 450 mg. now and I forgot how much

> she said I should take but it was in the thousands.....I really don't

> remember.

>

> Something else that happened that I was not laughing at was.......we waited 30

> minutes at one point for an elevator to take us to the first

> floor.......everytime the elevator opened up.....there were too many people on

> it and I couldn't fit in with my chair!!!!!!! Poor ......at this point we

> were punchy!!!!!!!!!!! And then out of the clear blue sky a nice doctor all

> dressed up in a suit with his stethescope around his neck came walking by and

> said, " Are you all right, can I help you?? " Boy did we jump at that.......and

> told him we had been waiting for 30 minutes......he directed us to the service

> elevators and smiled at us and disappeared......at that point......he was our

> angel!

>

> Oh the internist has ordered a nurse to come once a day to check my blood

> pressure and the respiratory therapist has to come every day too to check my

> saturation levels. I hope this resolves soon and I can breathe better and

> all this swelling goes away!

>

> Thanks for listening

> Trish

>

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

> We now have over 85,000 e-mail communities. Check out our new web site!

> http://www.onelist.com

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

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

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Share on other sites

  • 2 months later...
Guest guest

Dear Amy, What a great surprise for you and your doctors. I guess there

are miracles still out and about!

Linna with CPEO

Superman wrote:

>

> Hope the cast solves the problem. was at CHOP today to see Dr.

> son in orthopedics. He is wonderful. was put in a pavlic

> harness at 2 mos. for hip displasia. After 2 mos. no change so Dr.

> son said he would put her in a body cast. Under the first

> casteing he found there was no need for surgery because there was no

> obstruction - the hip bones just weren't formed right. So he set her

> legs and casted her. Her left hip was so abnormal he told me later

> that the one MD he consulted with on her hips, who " had a few more

> gray hairs than me " (thus more experienced, etc.) said the casting

> would never work and would need reconstructive surgery. He

> wanted to try anyway. Our first miracle was when was born

> alive, our second was when they took that first cast off. After 1

> month in the cast, her hip started to form a socket. I never saw a

> more excited staff as that day. They never saw anything like it,

> couldn't believe it and told us to " keep praying " . She had three cast

> over 4 months and her hips and legs are a little outward but work

> well. We can start standing her and we'll use MOFOs - only because

> her PT was concerned about weight bearing on the weak ankles. Best of

> Luck with 's cast. Amy - Mom to the younger.

>

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  • 9 months later...

In a message dated 2/24/00 8:56:24 AM Eastern Standard Time,

blinddog1996@... writes:

<< how about us MEN ..... >>

Hon....you havnt lost anything yet! Or are you asking the guys who have had

it done..??

(your wife) Carla

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  • 1 month later...
Guest guest

I will Jeannie!

Dawn

Re: Update

oh please send shannon my best that should not happen to anyone i cant

immagine how she feels send her my love please jeanie

Update

> Hi everyone,

>

> I spoke with a couple times today, and wanted to update you all on

> her recent surgery.

>

> She is uncomfortable today, but she said it's tolerable. Unfortunately,

> she's run into some staffing issues at the hospital which has resulted in

> what I consider neglect. The nurses got her up yesterday at about 1pm,

and

> when I spoke with her this a.m. at about 11 am., they had not gotten her

up

> at all since then. She's having a difficult time in getting out of the

bed

> herself do to her cathedar and her Central IV line. When she did get up

> yesterday, she felt weak, and nauseous which is most likely caused by the

> morphine, so the nurses advised her not to get up alone, but wait until

they

> could get there.

>

> I spoke with her again about 3:45 pm., and she had company. Her mom, aunt

> and daughter were there to visit, as well as get her washed up (the aides

> didn't do that either!). The Nurses Aides brought her a DRY basin to wash

> up with this a.m., obviously that didn't work. She said she asked them to

> bring the essentials needed, but again, they didn't. Her mom and aunt

were

> going to get her all washed up, rather than wait any longer.

>

> On a more positive note, the nutritionist went in to check on everything

> eating wise, and said she is doing well with the liquids, and to continue

> doing so.

>

> As far as the pain goes, she's tolerating it, and can't wait to get home.

> If all remains going well with her surgery, she may be going home late

> tomorrow afternoon. Her spirits are doing well, considering the

frustration

> with Nursing Staff.

>

> I will post later today or early tomorrow once I know more. Please keep

> in your thoughts.

>

> Co-angel reporting,

>

> Dawn

>

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

> Avoid the lines and visit avis.com for quick and easy online

> reservations. Enjoy a compact car nationwide for only $29 a day!

> Click here for more details.

> http://click./1/3011/7/_/675032/_/956346969/

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

>

>

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Guest guest

Lawrence Memorial, and trust me, they WOULD NOT have treated me like that! I'm a true b****!

-----Original Message-----From: Kim Mihelidakis Sent: Friday, April 21, 2000 9:10 PMTo: OSSG-NewEnglandegroupsSubject: Re: UpdateDawn Thanks for the update. What hospital is in? I hope the next couple days are better than the last couple for her.... kim in plymouth Dawn wrote: Hi everyone, I spoke with a couple times today, and wanted to update you all on her recent surgery. She is uncomfortable today, but she said it's tolerable. Unfortunately, she's run into some staffing issues at the hospital which has resulted in what I consider neglect. The nurses got her up yesterday at about 1pm, and when I spoke with her this a.m. at about 11 am., they had not gotten her up at all since then. She's having a difficult time in getting out of the bed herself do to her cathedar and her Central IV line. When she did get up yesterday, she felt weak, and nauseous which is most likely caused by the morphine, so the nurses advised her not to get up alone, but wait until they could get there. I spoke with her again about 3:45 pm., and she had company. Her mom, aunt and daughter were there to visit, as well as get her washed up (the aides didn't do that either!). The Nurses Aides brought her a DRY basin to wash up with this a.m., obviously that didn't work. She said she asked them to bring the essentials needed, but again, they didn't. Her mom and aunt were going to get her all washed up, rather than wait any longer. On a more positive note, the nutritionist went in to check on everything eating wise, and said she is doing well with the liquids, and to continue doing so. As far as the pain goes, she's tolerating it, and can't wait to get home. If all remains going well with her surgery, she may be going home late tomorrow afternoon. Her spirits are doing well, considering the frustration with Nursing Staff. I will post later today or early tomorrow once I know more. Please keep in your thoughts. Co-angel reporting, Dawn

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sorta, but more demanding now!

Re: Update Dawn Thanks for the update. What hospital is in? I hope the next couple days are better than the last couple for her.... kim in plymouth Dawn wrote: Hi everyone, I spoke with a couple times today, and wanted to update you all on her recent surgery. She is uncomfortable today, but she said it's tolerable. Unfortunately, she's run into some staffing issues at the hospital which has resulted in what I consider neglect. The nurses got her up yesterday at about 1pm, and when I spoke with her this a.m. at about 11 am., they had not gotten her up at all since then. She's having a difficult time in getting out of the bed herself do to her cathedar and her Central IV line. When she did get up yesterday, she felt weak, and nauseous which is most likely caused by the morphine, so the nurses advised her not to get up alone, but wait until they could get there. I spoke with her again about 3:45 pm., and she had company. Her mom, aunt and daughter were there to visit, as well as get her washed up (the aides didn't do that either!). The Nurses Aides brought her a DRY basin to wash up with this a.m., obviously that didn't work. She said she asked them to bring the essentials needed, but again, they didn't. Her mom and aunt were going to get her all washed up, rather than wait any longer. On a more positive note, the nutritionist went in to check on everything eating wise, and said she is doing well with the liquids, and to continue doing so. As far as the pain goes, she's tolerating it, and can't wait to get home. If all remains going well with her surgery, she may be going home late tomorrow afternoon. Her spirits are doing well, considering the frustration with Nursing Staff. I will post later today or early tomorrow once I know more. Please keep in your thoughts. Co-angel reporting, Dawn

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Dawn will you come to the hospital and yell at them if they're not nice

to me? :)

Mousey

Dawn wrote:

sorta,

but more demanding now!

-----Original

Message-----

From: Kim Mihelidakis

Sent: Friday, April 21, 2000

9:14 PM

To: OSSG-NewEnglandegroups

Subject: Re:

Update

But, were you a true b***** BEFORE you lost all this weight? I am

MUCH more demanding now than I used to be, thats for sure!

hugs! kim in plymouth

p.s. she probably needs someone like YOU to demand that she get

the care she needs........... :-)

Dawn wrote:

Lawrence

Memorial, and trust me, they WOULD NOT have treated me like that!

I'm a true b****!

-----Original

Message-----

From: Kim Mihelidakis

Sent: Friday, April 21, 2000

9:10 PM

To: OSSG-NewEnglandegroups

Subject: Re:

Update

Dawn

Thanks for the update. What hospital is in? I hope

the next couple days are better than the last couple for her....

kim in plymouth

Dawn wrote:

Hi everyone,

I spoke with a couple times today, and wanted to update

you all on

her recent surgery.

She is uncomfortable today, but she said it's tolerable. Unfortunately,

she's run into some staffing issues at the hospital which has resulted

in

what I consider neglect. The nurses got her up yesterday

at about 1pm, and

when I spoke with her this a.m. at about 11 am., they had not gotten

her up

at all since then. She's having a difficult time in getting

out of the bed

herself do to her cathedar and her Central IV line. When

she did get up

yesterday, she felt weak, and nauseous which is most likely caused

by the

morphine, so the nurses advised her not to get up alone, but wait

until they

could get there.

I spoke with her again about 3:45 pm., and she had company.

Her mom, aunt

and daughter were there to visit, as well as get her washed up

(the aides

didn't do that either!). The Nurses Aides brought her a DRY

basin to wash

up with this a.m., obviously that didn't work. She said she

asked them to

bring the essentials needed, but again, they didn't. Her

mom and aunt were

going to get her all washed up, rather than wait any longer.

On a more positive note, the nutritionist went in to check on everything

eating wise, and said she is doing well with the liquids, and to

continue

doing so.

As far as the pain goes, she's tolerating it, and can't wait to

get home.

If all remains going well with her surgery, she may be going home

late

tomorrow afternoon. Her spirits are doing well, considering

the frustration

with Nursing Staff.

I will post later today or early tomorrow once I know more. Please

keep

in your thoughts.

Co-angel reporting,

Dawn

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ABSOLUTELY!!! :)

Re: UpdateDawn Thanks for the update. What hospital is in? I hope the next couple days are better than the last couple for her.... kim in plymouth Dawn wrote: Hi everyone, I spoke with a couple times today, and wanted to update you all on her recent surgery. She is uncomfortable today, but she said it's tolerable. Unfortunately, she's run into some staffing issues at the hospital which has resulted in what I consider neglect. The nurses got her up yesterday at about 1pm, and when I spoke with her this a.m. at about 11 am., they had not gotten her up at all since then. She's having a difficult time in getting out of the bed herself do to her cathedar and her Central IV line. When she did get up yesterday, she felt weak, and nauseous which is most likely caused by the morphine, so the nurses advised her not to get up alone, but wait until they could get there. I spoke with her again about 3:45 pm., and she had company. Her mom, aunt and daughter were there to visit, as well as get her washed up (the aides didn't do that either!). The Nurses Aides brought her a DRY basin to wash up with this a.m., obviously that didn't work. She said she asked them to bring the essentials needed, but again, they didn't. Her mom and aunt were going to get her all washed up, rather than wait any longer. On a more positive note, the nutritionist went in to check on everything eating wise, and said she is doing well with the liquids, and to continue doing so. As far as the pain goes, she's tolerating it, and can't wait to get home. If all remains going well with her surgery, she may be going home late tomorrow afternoon. Her spirits are doing well, considering the frustration with Nursing Staff. I will post later today or early tomorrow once I know more. Please keep in your thoughts. Co-angel reporting, Dawn

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Good, cause I'm notoriously wimpy when it comes to dealing with service

providers of any kind. This is a trait I'm hoping to shed along with

my spare person. :D

Dawn wrote:

ABSOLUTELY!!!

:)

-----Original

Message-----

From: & Jody

Fortune

Sent: Friday, April 21, 2000

6:13 PM

To: OSSG-NewEnglandegroups

Subject: Re:

Update

Dawn will you come to the hospital and yell at them if they're not nice

to me? :)

Mousey

Dawn wrote:

sorta,

but more demanding now!

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oh please send shannon my best that should not happen to anyone i cant

immagine how she feels send her my love please jeanie

Update

> Hi everyone,

>

> I spoke with a couple times today, and wanted to update you all on

> her recent surgery.

>

> She is uncomfortable today, but she said it's tolerable. Unfortunately,

> she's run into some staffing issues at the hospital which has resulted in

> what I consider neglect. The nurses got her up yesterday at about 1pm,

and

> when I spoke with her this a.m. at about 11 am., they had not gotten her

up

> at all since then. She's having a difficult time in getting out of the

bed

> herself do to her cathedar and her Central IV line. When she did get up

> yesterday, she felt weak, and nauseous which is most likely caused by the

> morphine, so the nurses advised her not to get up alone, but wait until

they

> could get there.

>

> I spoke with her again about 3:45 pm., and she had company. Her mom, aunt

> and daughter were there to visit, as well as get her washed up (the aides

> didn't do that either!). The Nurses Aides brought her a DRY basin to wash

> up with this a.m., obviously that didn't work. She said she asked them to

> bring the essentials needed, but again, they didn't. Her mom and aunt

were

> going to get her all washed up, rather than wait any longer.

>

> On a more positive note, the nutritionist went in to check on everything

> eating wise, and said she is doing well with the liquids, and to continue

> doing so.

>

> As far as the pain goes, she's tolerating it, and can't wait to get home.

> If all remains going well with her surgery, she may be going home late

> tomorrow afternoon. Her spirits are doing well, considering the

frustration

> with Nursing Staff.

>

> I will post later today or early tomorrow once I know more. Please keep

> in your thoughts.

>

> Co-angel reporting,

>

> Dawn

>

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

> Avoid the lines and visit avis.com for quick and easy online

> reservations. Enjoy a compact car nationwide for only $29 a day!

> Click here for more details.

> http://click./1/3011/7/_/675032/_/956346969/

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

>

>

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Dawn

Thanks for the update. What hospital is in? I hope

the next couple days are better than the last couple for her....

kim in plymouth

Dawn wrote:

Hi everyone,

I spoke with a couple times today, and wanted to update

you all on

her recent surgery.

She is uncomfortable today, but she said it's tolerable. Unfortunately,

she's run into some staffing issues at the hospital which has resulted

in

what I consider neglect. The nurses got her up yesterday

at about 1pm, and

when I spoke with her this a.m. at about 11 am., they had not gotten

her up

at all since then. She's having a difficult time in getting

out of the bed

herself do to her cathedar and her Central IV line. When

she did get up

yesterday, she felt weak, and nauseous which is most likely caused

by the

morphine, so the nurses advised her not to get up alone, but wait

until they

could get there.

I spoke with her again about 3:45 pm., and she had company.

Her mom, aunt

and daughter were there to visit, as well as get her washed up

(the aides

didn't do that either!). The Nurses Aides brought her a DRY

basin to wash

up with this a.m., obviously that didn't work. She said she

asked them to

bring the essentials needed, but again, they didn't. Her

mom and aunt were

going to get her all washed up, rather than wait any longer.

On a more positive note, the nutritionist went in to check on everything

eating wise, and said she is doing well with the liquids, and to

continue

doing so.

As far as the pain goes, she's tolerating it, and can't wait to

get home.

If all remains going well with her surgery, she may be going home

late

tomorrow afternoon. Her spirits are doing well, considering

the frustration

with Nursing Staff.

I will post later today or early tomorrow once I know more. Please

keep

in your thoughts.

Co-angel reporting,

Dawn

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Guest guest

But, were you a true b***** BEFORE you lost all this weight? I am

MUCH more demanding now than I used to be, thats for sure!

hugs! kim in plymouth

p.s. she probably needs someone like YOU to demand that she get

the care she needs........... :-)

Dawn wrote:

Lawrence

Memorial, and trust me, they WOULD NOT have treated me like that!

I'm a true b****!

-----Original

Message-----

From: Kim Mihelidakis

Sent: Friday, April 21, 2000

9:10 PM

To: OSSG-NewEnglandegroups

Subject: Re:

Update

Dawn

Thanks for the update. What hospital is in? I hope

the next couple days are better than the last couple for her....

kim in plymouth

Dawn wrote:

Hi everyone,

I spoke with a couple times today, and wanted to update

you all on

her recent surgery.

She is uncomfortable today, but she said it's tolerable. Unfortunately,

she's run into some staffing issues at the hospital which has resulted

in

what I consider neglect. The nurses got her up yesterday

at about 1pm, and

when I spoke with her this a.m. at about 11 am., they had not gotten

her up

at all since then. She's having a difficult time in getting

out of the bed

herself do to her cathedar and her Central IV line. When

she did get up

yesterday, she felt weak, and nauseous which is most likely caused

by the

morphine, so the nurses advised her not to get up alone, but wait

until they

could get there.

I spoke with her again about 3:45 pm., and she had company.

Her mom, aunt

and daughter were there to visit, as well as get her washed up

(the aides

didn't do that either!). The Nurses Aides brought her a DRY

basin to wash

up with this a.m., obviously that didn't work. She said she

asked them to

bring the essentials needed, but again, they didn't. Her

mom and aunt were

going to get her all washed up, rather than wait any longer.

On a more positive note, the nutritionist went in to check on everything

eating wise, and said she is doing well with the liquids, and to

continue

doing so.

As far as the pain goes, she's tolerating it, and can't wait to

get home.

If all remains going well with her surgery, she may be going home

late

tomorrow afternoon. Her spirits are doing well, considering

the frustration

with Nursing Staff.

I will post later today or early tomorrow once I know more. Please

keep

in your thoughts.

Co-angel reporting,

Dawn

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You know I begged to let me call Dr. R and have him paged...he dont

like his patients being treated that way....she wouldnt let me call! I am

glad she is coming home today! WOOOHOOOO I am off work Tuesday..so i will go

over and help her out!

co angel responding..over and out

carla

ps...i just crack myself up! LOL!

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Kim,

I was there when Dawn was in the hospital.LOL YES, she was a B?!?! to

the staff. She did not let them get away with anything. So I guess that

means she was a B?!?! before she had her surgery, and I look up to that!!

LOL Pam

On Fri, 21 Apr 2000 18:13:42 -0700 Kim Mihelidakis

writes:

> But, were you a true b***** BEFORE you lost all this weight? I am

> MUCH

> more demanding now than I used to be, thats for sure!

> hugs! kim in plymouth

> p.s. she probably needs someone like YOU to demand that she get the

> care she needs........... :-)

>

> Dawn wrote:

>

> > Lawrence Memorial, and trust me, they WOULD NOT have treated me

> like

> > that! I'm a true b****!

> >

> > Re: Update

> >

> > Dawn

> > Thanks for the update. What hospital is in? I hope

> > the next couple days are better than the last couple for

> > her....

> > kim in plymouth

> >

> > Dawn wrote:

> >

> > > Hi everyone,

> > >

> > > I spoke with a couple times today, and wanted to

> > > update you all on

> > > her recent surgery.

> > >

> > > She is uncomfortable today, but she said it's tolerable.

> > > Unfortunately,

> > > she's run into some staffing issues at the hospital which

> > > has resulted in

> > > what I consider neglect. The nurses got her up yesterday

> > > at about 1pm, and

> > > when I spoke with her this a.m. at about 11 am., they had

> > > not gotten her up

> > > at all since then. She's having a difficult time in

> > > getting out of the bed

> > > herself do to her cathedar and her Central IV line. When

> > > she did get up

> > > yesterday, she felt weak, and nauseous which is most

> > > likely caused by the

> > > morphine, so the nurses advised her not to get up alone,

> > > but wait until they

> > > could get there.

> > >

> > > I spoke with her again about 3:45 pm., and she had

> > > company. Her mom, aunt

> > > and daughter were there to visit, as well as get her

> > > washed up (the aides

> > > didn't do that either!). The Nurses Aides brought her a

> > > DRY basin to wash

> > > up with this a.m., obviously that didn't work. She said

> > > she asked them to

> > > bring the essentials needed, but again, they didn't. Her

> > > mom and aunt were

> > > going to get her all washed up, rather than wait any

> > > longer.

> > >

> > > On a more positive note, the nutritionist went in to check

> > > on everything

> > > eating wise, and said she is doing well with the liquids,

> > > and to continue

> > > doing so.

> > >

> > > As far as the pain goes, she's tolerating it, and can't

> > > wait to get home.

> > > If all remains going well with her surgery, she may be

> > > going home late

> > > tomorrow afternoon. Her spirits are doing well,

> > > considering the frustration

> > > with Nursing Staff.

> > >

> > > I will post later today or early tomorrow once I know

> > > more. Please keep

> > > in your thoughts.

> > >

> > > Co-angel reporting,

> > >

> > > Dawn

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

> > > [Automatic, Safe, Reliable Backups and Restores]

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

> > >

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Pam

LOL! I can only IMAGINE what she is like now!!

kim

valiantduffy@... wrote:

Kim,

I was there when Dawn was in the hospital.LOL YES,

she was a B?!?! to

the staff. She did not let them get away with anything.

So I guess that

means she was a B?!?! before she had her surgery, and I look up

to that!!

LOL Pam

On Fri, 21 Apr 2000 18:13:42 -0700 Kim Mihelidakis

writes:

> But, were you a true b***** BEFORE you lost all this weight?

I am

> MUCH

> more demanding now than I used to be, thats for sure!

> hugs! kim in plymouth

> p.s. she probably needs someone like YOU to demand that

she get the

> care she needs........... :-)

>

> Dawn wrote:

>

> > Lawrence Memorial, and trust me, they WOULD NOT have

treated me

> like

> > that! I'm a true b****!

> >

> > Re:

Update

> >

> > Dawn

> > Thanks for the update.

What hospital is in? I hope

> > the next couple days are better

than the last couple for

> > her....

> > kim in plymouth

> >

> > Dawn wrote:

> >

> > > Hi everyone,

> > >

> > > I spoke with a couple times

today, and wanted to

> > > update you all on

> > > her recent surgery.

> > >

> > > She is uncomfortable today, but she

said it's tolerable.

> > > Unfortunately,

> > > she's run into some staffing issues

at the hospital which

> > > has resulted in

> > > what I consider neglect. The

nurses got her up yesterday

> > > at about 1pm, and

> > > when I spoke with her this a.m. at

about 11 am., they had

> > > not gotten her up

> > > at all since then. She's having

a difficult time in

> > > getting out of the bed

> > > herself do to her cathedar and her

Central IV line. When

> > > she did get up

> > > yesterday, she felt weak, and nauseous

which is most

> > > likely caused by the

> > > morphine, so the nurses advised her

not to get up alone,

> > > but wait until they

> > > could get there.

> > >

> > > I spoke with her again about 3:45

pm., and she had

> > > company. Her mom, aunt

> > > and daughter were there to visit,

as well as get her

> > > washed up (the aides

> > > didn't do that either!). The

Nurses Aides brought her a

> > > DRY basin to wash

> > > up with this a.m., obviously that

didn't work. She said

> > > she asked them to

> > > bring the essentials needed, but

again, they didn't. Her

> > > mom and aunt were

> > > going to get her all washed up, rather

than wait any

> > > longer.

> > >

> > > On a more positive note, the nutritionist

went in to check

> > > on everything

> > > eating wise, and said she is doing

well with the liquids,

> > > and to continue

> > > doing so.

> > >

> > > As far as the pain goes, she's tolerating

it, and can't

> > > wait to get home.

> > > If all remains going well with her

surgery, she may be

> > > going home late

> > > tomorrow afternoon. Her spirits

are doing well,

> > > considering the frustration

> > > with Nursing Staff.

> > >

> > > I will post later today or early

tomorrow once I know

> > > more. Please keep

> > > in your thoughts.

> > >

> > > Co-angel reporting,

> > >

> > > Dawn

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

> > >

[Automatic, Safe, Reliable Backups and Restores]

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

> > >

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Dawn,

Aw what a bummer for . I hope that she is doing better today! Send her my best wishes!

Dawn wrote:

Hi everyone, I spoke with a couple times today, and wanted to update you all onher recent surgery. She is uncomfortable today, but she said it's tolerable. Unfortunately,she's run into some staffing issues at the hospital which has resulted inwhat I consider neglect. The nurses got her up yesterday at about 1pm, andwhen I spoke with her this a.m. at about 11 am., they had not gotten her upat all since then. She's having a difficult time in getting out of the bedherself do to her cathedar and her Central IV line. When she did get upyesterday, she felt weak, and nauseous which is most likely caused by themorphine, so the nurses advised her not to get up alone, but wait until theycould get there. I spoke with her again about 3:45 pm., and she had company. Her mom, auntand daughter were there to visit, as well as get her washed up (the aidesdidn't do that either!). The Nurses Aides brought her a DRY basin to washup with this a.m., obviously that didn't work. She said she asked them tobring the essentials needed, but again, they didn't. Her mom and aunt weregoing to get her all washed up, rather than wait any longer. On a more positive note, the nutritionist went in to check on everythingeating wise, and said she is doing well with the liquids, and to continuedoing so. As far as the pain goes, she's tolerating it, and can't wait to get home.If all remains going well with her surgery, she may be going home latetomorrow afternoon. Her spirits are doing well, considering the frustrationwith Nursing Staff. I will post later today or early tomorrow once I know more. Please keep in your thoughts. Co-angel reporting, Dawn

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