Re: Friday's J-tube emergency

[Guest guest]

Trish, how do you keep going with such a positive attitude? I am falling

apart with my list of things gone wrong. You are a good inspiration. I know

what you mean about the woman's comment and I have gotten to where I speak

right up and tell them that was uncalled for and it hurts and etc etc. I

have gotten $ back for charges I shouldn't have gotten and new appts, faster

appts., people listening to me. It is worth it and I usually feel better

altho with some people it is useless.

Your problem certainly doesn't sound right, something must be wrong and the

people who did the tubes should figure it out I think. Keep pushing but stay

calm and nice but firm and I think someone will finally listen to you.

S.

Re: Friday's J-tube emergency

>From: PRodrig995@...

>

>Hi everyone!

>

>Friday afternoon....after the homehealth aid left at 12 Noon.....I

leisurely

>went to my computer and thought I was going to have a nice afternoon just

>reading back e-mails and digests....when all of a sudden the unspeakable

>happened AGAIN!

>

>It was about 3:00 p.m.( and of course it is Friday afternoon and my OWN

>doctor had gone home for the weekend!!!!)and I had to go to the commode

which

>is right here in my computer room. I transferred off my wheelchair onto

the

>commode and then afterwards just bent slightly to pick my drainage bag up

and

>it happened!!!!!!!!!!!!!!!!!!!! YES........my J-tube and appliance POPPED

>right out onto the floor!!!!!!!!!!!!!! I was so nervous! I can't bend

very

>much like that to pick something off the floor because I have no balance

and

>I practically fell out of the wheelchair! Meanwhile all this intestional

>fluid is spurted out of the hole in my stomach! Oh I was not a happy

>camper!

>

>I picked up the tube off the floor.....not even realizing that it was

>contaminated from the floor....and stuck it back in the hole about two

>inches....it was hurting. I then drove my electric wheelchair to the phone

>and dialed with one hand holding the tube and the other dialing . Oh

you

>can just imagine his voice when I said, " , I have an emergency

here...my

>J-tube fell out onto the floor! " He came immediately from school to drive

me

>up to BOSTON AGAIN!!!!!!!

>

>This Boston thing is getting to me....every other day ....it is just a

little

>bit much!!!!!!

>

>I remember the surgeon telling me if the j-tube falls out to immediately

try

>to keep it in because this is the hole that closes up immediately if you

>don't. So I tried holding it in place all the way up to Boston....what a

>sight.....my dress was wrapped around my neck somewhere.....I was trying to

>hold the bottom tube in while the G-tube swung in the wind!!!!!!!!!!

>hahahahahahahahahahahahaha The truck drivers were really getting a really

>odd view of me! They must have thought I was an alien or something with

some

>things growing out of my stomach!!!!!!!!!!!!! hahahahahaha

>

>Anyway, my surgeon's secretary got us in to see another surgeon....an older

>gent. He was very nice. He brougt me into his office.....he stuck a

sterile

>scissors into the hole and hurt me somewhat and said.... " I'm not going to

>touch this one. " Well, anyway, he got another doctor to see us in

>radiology......anyway....this doctor put it in under the x-ray machine. He

>had to go through tissue that had already grown over! OUCH!!!! It really

>hurt alot and they didn't give me anything for it!!!!!! Finally he got it

in

>after a lot of tries....he had to put a smaller tube in.

>

>I told him, " Thank you, you just saved us 15 hours in the emergency room! "

>

>When we got home....I took the gauze pad off and guess what....they put the

>wrong tube in!!!!!!! UGH! They put in a foley cathetar one in like the

one

>I have in my G-tube. The other J-tube I had before was a plain one....one

>without the balloon device.

>I called my surgeon because I was concerned that the radiology doctor

>inflated the balloon inside my intestines! She told me to check and to

stick

>the special syringe I have to do so. I checked and he didn't inflate it so

>it was ok. She said sometimes they use these tubes for J-tubes.

>

>She asked me what was the matter? WHAT WAS THE MATTER????????????????

>IS SHE CRAZY???????!!!!!!!!!! I have been up to the emergency room 6 times

>in 12 days with two more admissions because of 6 j-tubes and g-tubes

falling

>out and what was the matter????????

>

>I told her I was frustrated and very upset with all of this and mind you in

a

>very soft and calm voice, that this should not be happening like this and

>that I thought my body was rejecting these tubes....after all they are

>silicone treated. She said no and do you want to know what she said to

>me............?? She said, " I think you are making more of this than it

>is. "

>

>When she said that I was so hurt and I was so taken aback that I was

>speechless.

>

>She didn't have to make that cocky remark to me....that wasn't called for.

I

>am a very calm and easy going person, but that remark really made me wild!

>My husband wasn't too happy either.

>

>You know, doctors don't have to live OUR lives with all of the obstacles,

>emergencies, feeling sick all the time, etc. They put these tubes in 100

>times a day and don't think anything of it....they are not going through

>it.....we are....and that certainly was not fair that she said that to me.

>

>Now I am holding my breath.....looking and feeling my tube area all the

>time....and worrying if they are going to fall out again! Already the NEW

>j-tube is out 1 inch again!

>

>I have to get some new tubes.....I don't think these are the right ones for

>me. Does anyone have any ideas or suggestions?

>

>Meanwhile if I have to go through this again....I know I will be totally

bald

>because I will have torn all the hair out of my head and I will match my

>husband! hahahahahahaha

>

>Trish Rodrigues

>

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

>Have you visited the new ONElist home page lately?

>http://www.ONElist.com

>ONElist: The Leading e-mail list and community service on the Internet!

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

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

affected by mitochondrial disease.

>

[Guest guest]

Trish, how do you keep going with such a positive attitude? I am falling

apart with my list of things gone wrong. You are a good inspiration. I know

what you mean about the woman's comment and I have gotten to where I speak

right up and tell them that was uncalled for and it hurts and etc etc. I

have gotten $ back for charges I shouldn't have gotten and new appts, faster

appts., people listening to me. It is worth it and I usually feel better

altho with some people it is useless.

Your problem certainly doesn't sound right, something must be wrong and the

people who did the tubes should figure it out I think. Keep pushing but stay

calm and nice but firm and I think someone will finally listen to you.

S.

Re: Friday's J-tube emergency

>From: PRodrig995@...

>

>Hi everyone!

>

>Friday afternoon....after the homehealth aid left at 12 Noon.....I

leisurely

>went to my computer and thought I was going to have a nice afternoon just

>reading back e-mails and digests....when all of a sudden the unspeakable

>happened AGAIN!

>

>It was about 3:00 p.m.( and of course it is Friday afternoon and my OWN

>doctor had gone home for the weekend!!!!)and I had to go to the commode

which

>is right here in my computer room. I transferred off my wheelchair onto

the

>commode and then afterwards just bent slightly to pick my drainage bag up

and

>it happened!!!!!!!!!!!!!!!!!!!! YES........my J-tube and appliance POPPED

>right out onto the floor!!!!!!!!!!!!!! I was so nervous! I can't bend

very

>much like that to pick something off the floor because I have no balance

and

>I practically fell out of the wheelchair! Meanwhile all this intestional

>fluid is spurted out of the hole in my stomach! Oh I was not a happy

>camper!

>

>I picked up the tube off the floor.....not even realizing that it was

>contaminated from the floor....and stuck it back in the hole about two

>inches....it was hurting. I then drove my electric wheelchair to the phone

>and dialed with one hand holding the tube and the other dialing . Oh

you

>can just imagine his voice when I said, " , I have an emergency

here...my

>J-tube fell out onto the floor! " He came immediately from school to drive

me

>up to BOSTON AGAIN!!!!!!!

>

>This Boston thing is getting to me....every other day ....it is just a

little

>bit much!!!!!!

>

>I remember the surgeon telling me if the j-tube falls out to immediately

try

>to keep it in because this is the hole that closes up immediately if you

>don't. So I tried holding it in place all the way up to Boston....what a

>sight.....my dress was wrapped around my neck somewhere.....I was trying to

>hold the bottom tube in while the G-tube swung in the wind!!!!!!!!!!

>hahahahahahahahahahahahaha The truck drivers were really getting a really

>odd view of me! They must have thought I was an alien or something with

some

>things growing out of my stomach!!!!!!!!!!!!! hahahahahaha

>

>Anyway, my surgeon's secretary got us in to see another surgeon....an older

>gent. He was very nice. He brougt me into his office.....he stuck a

sterile

>scissors into the hole and hurt me somewhat and said.... " I'm not going to

>touch this one. " Well, anyway, he got another doctor to see us in

>radiology......anyway....this doctor put it in under the x-ray machine. He

>had to go through tissue that had already grown over! OUCH!!!! It really

>hurt alot and they didn't give me anything for it!!!!!! Finally he got it

in

>after a lot of tries....he had to put a smaller tube in.

>

>I told him, " Thank you, you just saved us 15 hours in the emergency room! "

>

>When we got home....I took the gauze pad off and guess what....they put the

>wrong tube in!!!!!!! UGH! They put in a foley cathetar one in like the

one

>I have in my G-tube. The other J-tube I had before was a plain one....one

>without the balloon device.

>I called my surgeon because I was concerned that the radiology doctor

>inflated the balloon inside my intestines! She told me to check and to

stick

>the special syringe I have to do so. I checked and he didn't inflate it so

>it was ok. She said sometimes they use these tubes for J-tubes.

>

>She asked me what was the matter? WHAT WAS THE MATTER????????????????

>IS SHE CRAZY???????!!!!!!!!!! I have been up to the emergency room 6 times

>in 12 days with two more admissions because of 6 j-tubes and g-tubes

falling

>out and what was the matter????????

>

>I told her I was frustrated and very upset with all of this and mind you in

a

>very soft and calm voice, that this should not be happening like this and

>that I thought my body was rejecting these tubes....after all they are

>silicone treated. She said no and do you want to know what she said to

>me............?? She said, " I think you are making more of this than it

>is. "

>

>When she said that I was so hurt and I was so taken aback that I was

>speechless.

>

>She didn't have to make that cocky remark to me....that wasn't called for.

I

>am a very calm and easy going person, but that remark really made me wild!

>My husband wasn't too happy either.

>

>You know, doctors don't have to live OUR lives with all of the obstacles,

>emergencies, feeling sick all the time, etc. They put these tubes in 100

>times a day and don't think anything of it....they are not going through

>it.....we are....and that certainly was not fair that she said that to me.

>

>Now I am holding my breath.....looking and feeling my tube area all the

>time....and worrying if they are going to fall out again! Already the NEW

>j-tube is out 1 inch again!

>

>I have to get some new tubes.....I don't think these are the right ones for

>me. Does anyone have any ideas or suggestions?

>

>Meanwhile if I have to go through this again....I know I will be totally

bald

>because I will have torn all the hair out of my head and I will match my

>husband! hahahahahahaha

>

>Trish Rodrigues

>

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

>Have you visited the new ONElist home page lately?

>http://www.ONElist.com

>ONElist: The Leading e-mail list and community service on the Internet!

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

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

affected by mitochondrial disease.

>

[Guest guest]

Hi everyone!

Friday afternoon....after the homehealth aid left at 12 Noon.....I leisurely

went to my computer and thought I was going to have a nice afternoon just

reading back e-mails and digests....when all of a sudden the unspeakable

happened AGAIN!

It was about 3:00 p.m.( and of course it is Friday afternoon and my OWN

doctor had gone home for the weekend!!!!)and I had to go to the commode which

is right here in my computer room. I transferred off my wheelchair onto the

commode and then afterwards just bent slightly to pick my drainage bag up and

it happened!!!!!!!!!!!!!!!!!!!! YES........my J-tube and appliance POPPED

right out onto the floor!!!!!!!!!!!!!! I was so nervous! I can't bend very

much like that to pick something off the floor because I have no balance and

I practically fell out of the wheelchair! Meanwhile all this intestional

fluid is spurted out of the hole in my stomach! Oh I was not a happy

camper!

I picked up the tube off the floor.....not even realizing that it was

contaminated from the floor....and stuck it back in the hole about two

inches....it was hurting. I then drove my electric wheelchair to the phone

and dialed with one hand holding the tube and the other dialing . Oh you

can just imagine his voice when I said, " , I have an emergency here...my

J-tube fell out onto the floor! " He came immediately from school to drive me

up to BOSTON AGAIN!!!!!!!

This Boston thing is getting to me....every other day ....it is just a little

bit much!!!!!!

I remember the surgeon telling me if the j-tube falls out to immediately try

to keep it in because this is the hole that closes up immediately if you

don't. So I tried holding it in place all the way up to Boston....what a

sight.....my dress was wrapped around my neck somewhere.....I was trying to

hold the bottom tube in while the G-tube swung in the wind!!!!!!!!!!

hahahahahahahahahahahahaha The truck drivers were really getting a really

odd view of me! They must have thought I was an alien or something with some

things growing out of my stomach!!!!!!!!!!!!! hahahahahaha

Anyway, my surgeon's secretary got us in to see another surgeon....an older

gent. He was very nice. He brougt me into his office.....he stuck a sterile

scissors into the hole and hurt me somewhat and said.... " I'm not going to

touch this one. " Well, anyway, he got another doctor to see us in

radiology......anyway....this doctor put it in under the x-ray machine. He

had to go through tissue that had already grown over! OUCH!!!! It really

hurt alot and they didn't give me anything for it!!!!!! Finally he got it in

after a lot of tries....he had to put a smaller tube in.

I told him, " Thank you, you just saved us 15 hours in the emergency room! "

When we got home....I took the gauze pad off and guess what....they put the

wrong tube in!!!!!!! UGH! They put in a foley cathetar one in like the one

I have in my G-tube. The other J-tube I had before was a plain one....one

without the balloon device.

I called my surgeon because I was concerned that the radiology doctor

inflated the balloon inside my intestines! She told me to check and to stick

the special syringe I have to do so. I checked and he didn't inflate it so

it was ok. She said sometimes they use these tubes for J-tubes.

She asked me what was the matter? WHAT WAS THE MATTER????????????????

IS SHE CRAZY???????!!!!!!!!!! I have been up to the emergency room 6 times

in 12 days with two more admissions because of 6 j-tubes and g-tubes falling

out and what was the matter????????

I told her I was frustrated and very upset with all of this and mind you in a

very soft and calm voice, that this should not be happening like this and

that I thought my body was rejecting these tubes....after all they are

silicone treated. She said no and do you want to know what she said to

me............?? She said, " I think you are making more of this than it

is. "

When she said that I was so hurt and I was so taken aback that I was

speechless.

She didn't have to make that cocky remark to me....that wasn't called for. I

am a very calm and easy going person, but that remark really made me wild!

My husband wasn't too happy either.

You know, doctors don't have to live OUR lives with all of the obstacles,

emergencies, feeling sick all the time, etc. They put these tubes in 100

times a day and don't think anything of it....they are not going through

it.....we are....and that certainly was not fair that she said that to me.

Now I am holding my breath.....looking and feeling my tube area all the

time....and worrying if they are going to fall out again! Already the NEW

j-tube is out 1 inch again!

I have to get some new tubes.....I don't think these are the right ones for

me. Does anyone have any ideas or suggestions?

Meanwhile if I have to go through this again....I know I will be totally bald

because I will have torn all the hair out of my head and I will match my

husband! hahahahahahaha

Trish Rodrigues

[Guest guest]

In a message dated 99-05-02 15:56:06 EDT, you write:

<< Meanwhile if I have to go through this again....I know I will be totally

bald

because I will have torn all the hair out of my head and I will match my

husband! hahahahahahaha

Trish Rodrigues >>

Oh Trish, You are an inspiration to us all. I just love your e-mails!! I

wish you the best with the tubes, and would like a clear shot at that nurses

chin region- How insensative! Ya know, they must see so much that they are

desensatised...other than this I just can't think of a reason for the

rudeness of 80 % of the medical community. I will Hope for you that your

experences improve a great deal, and SOON!

Lynnie

[Guest guest]

In a message dated 99-05-02 15:56:06 EDT, you write:

<< Meanwhile if I have to go through this again....I know I will be totally

bald

because I will have torn all the hair out of my head and I will match my

husband! hahahahahahaha

Trish Rodrigues >>

Oh Trish, You are an inspiration to us all. I just love your e-mails!! I

wish you the best with the tubes, and would like a clear shot at that nurses

chin region- How insensative! Ya know, they must see so much that they are

desensatised...other than this I just can't think of a reason for the

rudeness of 80 % of the medical community. I will Hope for you that your

experences improve a great deal, and SOON!

Lynnie