I need some advice....(kind of urgent)

[Guest guest]

Good Morning to All and Hava a Great Week! I'm not really sure I will...but I'll try my best! As some of you may know at the moment I have a Blood Clot in my leg. If the pain doesn't go away by tommorrow night (Tuesday) or Wednesday I'm supposed to return to ER. Which I'm still having the pain, I need your advice on the following question and what can I do....

If Tuesday night or Wednesday morning I'm still having the pain I have to return to ER to re-check the Blood Clot! If I go tommorrow night, that means I will have to miss my Remicade Infusion, for the next 8 weeks be in pain not being able to use my fingers or my hands and flaring.

If I go on Wednesday all day, I'm at the hospital because that's were I receive the Remicade. Problem is do I finish my Infusion and go straight to the second ER, when I'm already at the first hospital, and during Infusion my Blood Pressure, Pulse & Oxygen level is checked every 30 minutes (already hooked on a Heart Monitor).

Even when my blood pressures falls to 95/66 and they have to contact my dr immediately, they don't even do that. Most of the time I end up getting up from the stretcher in pain and contacting my dr myself. Which sometimes I can reach him and sometimes I can't.

I contacted my first primary, to ask them if they can call hospital#1 on Wednesday to keep a close eye on me, response I got "it's not us who need to notify the hospital, it's the dr who ordered the Infusion." I know exactly what the second one will say....I'm still trying to reach his office.

To avoid going to hospital #2 which is about 45 minutes further.

PS: I apologize if it's seems confusing!

Irene Raynaud's Disease 09/07 PF 03/07

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Irene you need to get new doctors. If your doctor who prescribed the

Remicade isnt monitoring your infusions then you need to get some one

else who will. Your not supposed to get thos infusions if you are

sick or have an infection etc. Since your the only one who knows how

you react and all that I cant tell you what to do but I can say

myself I didnt go in and get my infusions when I was sick or stuff

like that, it makes it harder for treatment if you are in the

hospital. So that is something you may want to think about. Your

primary doc should tell you wether you need to take the infusion or

not.

Sandie

>

> Good Morning to All and Hava a Great Week! I'm not really sure I

will...but I'll try my best! As some of you may know at the moment I

have a Blood Clot in my leg. If the pain doesn't go away by tommorrow

night (Tuesday) or Wednesday I'm supposed to return to ER. Which I'm

still having the pain, I need your advice on the following question

and what can I do....

>

> If Tuesday night or Wednesday morning I'm still having the pain I?

have to return to ER to re-check the Blood Clot! If I go tommorrow

night, that means I will have to miss my Remicade Infusion, for the

next 8 weeks be in pain not being able to use my fingers or my hands

and flaring.

>

> If I go on Wednesday all day, I'm at the hospital because that's

were I receive the Remicade. Problem is do I finish my Infusion and

go straight to the second ER, when I'm already at the first hospital,

and during Infusion my Blood Pressure, Pulse? & Oxygen level?is

checked every?30 minutes (already hooked on a Heart Monitor).

>

> Even when my blood pressures falls to 95/66 and they have to

contact my dr immediately, they don't even do that. Most of the time

I end up getting up from the stretcher in pain and contacting my dr

myself. Which sometimes I can reach him and sometimes I can't.

>

> I contacted my first primary, to ask them if they can call

hospital#1 on Wednesday to keep a close eye on me, response I

got " it's not us who need to notify the hospital, it's the dr who

ordered the Infusion. " I know exactly what the second one will

say....I'm still trying to reach his office.

>

> To avoid going to hospital #2 which is about 45 minutes further.

>

> PS: I apologize if it's seems confusing!

> Irene Raynaud's Disease 09/07 PF 03/07

>

>

______________________________________________________________________

__

> Meet the new AOL.ca. Free radio, music, videos, news &

entertainment ? with a Canadian perspective.

>

[Guest guest]

Irene you need to get new doctors. If your doctor who prescribed the

Remicade isnt monitoring your infusions then you need to get some one

else who will. Your not supposed to get thos infusions if you are

sick or have an infection etc. Since your the only one who knows how

you react and all that I cant tell you what to do but I can say

myself I didnt go in and get my infusions when I was sick or stuff

like that, it makes it harder for treatment if you are in the

hospital. So that is something you may want to think about. Your

primary doc should tell you wether you need to take the infusion or

not.

Sandie

>

> Good Morning to All and Hava a Great Week! I'm not really sure I

will...but I'll try my best! As some of you may know at the moment I

have a Blood Clot in my leg. If the pain doesn't go away by tommorrow

night (Tuesday) or Wednesday I'm supposed to return to ER. Which I'm

still having the pain, I need your advice on the following question

and what can I do....

>

> If Tuesday night or Wednesday morning I'm still having the pain I?

have to return to ER to re-check the Blood Clot! If I go tommorrow

night, that means I will have to miss my Remicade Infusion, for the

next 8 weeks be in pain not being able to use my fingers or my hands

and flaring.

>

> If I go on Wednesday all day, I'm at the hospital because that's

were I receive the Remicade. Problem is do I finish my Infusion and

go straight to the second ER, when I'm already at the first hospital,

and during Infusion my Blood Pressure, Pulse? & Oxygen level?is

checked every?30 minutes (already hooked on a Heart Monitor).

>

> Even when my blood pressures falls to 95/66 and they have to

contact my dr immediately, they don't even do that. Most of the time

I end up getting up from the stretcher in pain and contacting my dr

myself. Which sometimes I can reach him and sometimes I can't.

>

> I contacted my first primary, to ask them if they can call

hospital#1 on Wednesday to keep a close eye on me, response I

got " it's not us who need to notify the hospital, it's the dr who

ordered the Infusion. " I know exactly what the second one will

say....I'm still trying to reach his office.

>

> To avoid going to hospital #2 which is about 45 minutes further.

>

> PS: I apologize if it's seems confusing!

> Irene Raynaud's Disease 09/07 PF 03/07

>

>

______________________________________________________________________

__

> Meet the new AOL.ca. Free radio, music, videos, news &

entertainment ? with a Canadian perspective.

>

[Guest guest]

Thanks Sandie....It's the nurses at the hospital in ER who are monitoring me, if something goes wrong with Infusion, they're immediately supposed to notify my dr...but they don't notify. I'll see how I'll do today at work with the flaring of my joints....Irene

---- Original Message ----

To: Breathe-Support

Sent: Mon, 17 Dec 2007 10:21 am

Subject: Re: I need some advice....(kind of urgent)

Irene you need to get new doctors. If your doctor who prescribed the

Remicade isnt monitoring your infusions then you need to get some one

else who will. Your not supposed to get thos infusions if you are

sick or have an infection etc. Since your the only one who knows how

you react and all that I cant tell you what to do but I can say

myself I didnt go in and get my infusions when I was sick or stuff

like that, it makes it harder for treatment if you are in the

hospital. So that is something you may want to think about. Your

primary doc should tell you wether you need to take the infusion or

not.

Sandie

>

> Good Morning to All and Hava a Great Week! I'm not really sure I

will...but I'll try my best! As some of you may know at the moment I

have a Blood Clot in my leg. If the pain doesn't go away by tommorrow

night (Tuesday) or Wednesday I'm supposed to return to ER. Which I'm

still having the pain, I need your advice on the following question

and what can I do....

>

> If Tuesday night or Wednesday morning I'm still having the pain I?

have to return to ER to re-check the Blood Clot! If I go tommorrow

night, that means I will have to miss my Remicade Infusion, for the

next 8 weeks be in pain not being able to use my fingers or my hands

and flaring.

>

> If I go on Wednesday all day, I'm at the hospital because that's

were I receive the Remicade. Problem is do I finish my Infusion and

go straight to the second ER, when I'm already at the first hospital,

and during Infusion my Blood Pressure, Pulse? & Oxygen level?is

checked every?30 minutes (already hooked on a Heart Monitor).

>

> Even when my blood pressures falls to 95/66 and they have to

contact my dr immediately, they don't even do that. Most of the time

I end up getting up from the stretcher in pain and contacting my dr

myself. Which sometimes I can reach him and sometimes I can't.

>

> I contacted my first primary, to ask them if they can call

hospital#1 on Wednesday to keep a close eye on me, response I

got "it's not us who need to notify the hospital, it's the dr who

ordered the Infusion." I know exactly what the second one will

say....I'm still trying to reach his office.

>

> To avoid going to hospital #2 which is about 45 minutes further.

>

> PS: I apologize if it's seems confusing!

> Irene Raynaud's Disease 09/07 PF 03/07

>

>

__________________________________________________________

__

> Meet the new AOL.ca. Free radio, music, videos, news &

entertainment ? with a Canadian perspective.

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Irene... will it work to contact "whom ever" that requested you to go back for the clot and tell them you ARE still in pain and want to come back now...explain your situation and see what they advise.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Irene...I'm staggered when comments like yours, "nurses don't notify Dr." come on board. If you know something is wrong INSIST on the floor supervisor and INSIST your Dr. be notified. Surely they know they are medically liable!!

Whooo I get so hot under the collar when we must advocate for ourselves!!

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Irene: Sher gets hot under the collar. I get hot under the collar. We

all get hot under the collar. However, advocate for ourselves, manage

our own medical care is reality.

After my VATS, I was suppose to start walking early the next morning.

One nurse was going to walk me, then she was tied up so another was,

then I was moved to another floor and another was. I kept pushing and

the nursing supervisor for the floor ended up walking me. I also got a

very nice visit shortly thereafter from the Director of Nursing for the

hospital. I had no more problems (Note: They didn't want me walking by

myself as long as the tube was still in). I didn't like having to

complain or raise it to another level, but walking soon and often was

essential to my quick recovery and I wasn't going to have it

compromised.

>

> Irene...I'm staggered when comments like yours, " nurses don't notify

Dr. " come on board. If you know something is wrong INSIST on the floor

supervisor and INSIST your Dr. be notified. Surely they know they are

medically liable!!

> Whooo I get so hot under the collar when we must advocate for

ourselves!!

> Sher; ipf 3-06; OR.

> Don't fret about tomorrow, God is already there!

>

[Guest guest]

Stacie... Bruce is writing here about the same things we talked about. Keep on keepin' on! I guess we really don't have much choice.

At least we here on the board know what we are fighting. I'm sorry you do not have answers yet. I think I would rather know.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Sorry!!! I meant Sandie. Not Stacie.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Sher, Bruce

I got in touch with my 2nd primary dr's office and was told I need to notify the nurses of what is going on and they have to keep a close eye on me and also told them what happenned last time. I'll keep a record of my vitals signs, if there's anything of worrysome I will tell them to get their act together.

I told my dr's office that last time, when I asked the nurses to call your office they didn't....and I ended puking for 2 hours and nothing was given and no one even bothered to alert the ER physician. I kept asking the nurse did you notify my dr "She would always tell me of course I did and I was repeating myself everytime she walked in and the same answer of course I did!

On another note, on Friday ER dr told me to return to emergency department if the pain persists, in order to repeat the ultrasound....which pain is persisting and left work early to go the hospital. I saw the ER dr, new one this time and tells me "it's to early to repeat the ultrasound, if pain persists come back next week".

I asked him about the D-Dimmer results 1780 High....he said with the Raynaud's Disease, PF and all of the other medical conditions I have it will always be very High. He also said "A Positive D-Dimmer is an indication of a Blood Clot somewhere in the body". The nurse even asked me if I was bleeding and I said NO!

The ER dr also said continue to take Percocet for the pain whch was prescribed to me on Friday.

Irene Raynaud's Disease 09/07 PF 03/07 Canada

---- Original Message ----

To: Breathe-Support

Sent: Mon, 17 Dec 2007 2:25 pm

Subject: Re: I need some advice....(kind of urgent)

Irene: Sher gets hot under the collar. I get hot under the collar. We

all get hot under the collar. However, advocate for ourselves, manage

our own medical care is reality.

After my VATS, I was suppose to start walking early the next morning.

One nurse was going to walk me, then she was tied up so another was,

then I was moved to another floor and another was. I kept pushing and

the nursing supervisor for the floor ended up walking me. I also got a

very nice visit shortly thereafter from the Director of Nursing for the

hospital. I had no more problems (Note: They didn't want me walking by

myself as long as the tube was still in). I didn't like having to

complain or raise it to another level, but walking soon and often was

essential to my quick recovery and I wasn't going to have it

compromised.

>

> Irene...I'm staggered when comments like yours, "nurses don't notify

Dr." come on board. If you know something is wrong INSIST on the floor

supervisor and INSIST your Dr. be notified. Surely they know they are

medically liable!!

> Whooo I get so hot under the collar when we must advocate for

ourselves!!

> Sher; ipf 3-06; OR.

> Don't fret about tomorrow, God is already there!

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

I am so glad you spoke to the Dr . I am seeing my reg

Dr tomorrow for some blood tests and was going to ask

him about you but I wouldn't be home before you left

for your infusion. Please be very careful and speak up

if things aren't going right. I have been a wimp for

many years and what I have learned is the squeaky

wheel gets the oil. I wish you a speedy recovery and

send lots of hugs . I have a daughter your age and I

feel so bad for you and all the problems you've been

having . I pray for good thing to happen for you and

all of us in the new year. Take care

IPF2/07 IL

--- Irn3189@... wrote:

> Sher, Bruce

>

> I got in touch with my 2nd primary dr's office and

> was told I need to notify the nurses of what is

> going on and they have to keep a close eye on me and

> also told them what happenned last time. I'll keep a

> record of my vitals signs, if there's anything of

> worrysome I will tell them to get their act

> together.

>

> I told?my dr's office?that last time, when I asked

> the nurses to call your office they didn't....and I

> ended puking for 2 hours and nothing was given and

> no one even bothered to alert the ER physician. I

> kept asking the nurse did you notify my dr " She

> would always tell me of course I did and I was

> repeating myself everytime she walked in and the

> same answer of course I did!

>

> On another note, on Friday ER dr told me to return

> to emergency department if the pain persists, in

> order to repeat the ultrasound....which pain is

> persisting and left work early to go the hospital. I

> saw the ER dr, new one this time and tells me " it's

> to early to repeat the ultrasound, if pain persists

> come back next week " .

>

> I asked him about the D-Dimmer results 1780

> High....he said with the Raynaud's Disease, PF and

> all of the other medical conditions I have it will

> always be very High. He also said " A Positive

> D-Dimmer is an indication of a Blood Clot somewhere

> in the body " . The nurse even asked me if I was

> bleeding and I said NO!

>

> The ER dr also said continue to take Percocet for

> the pain whch was prescribed to me on Friday.

>

> Irene Raynaud's Disease 09/07 PF 03/07 Canada

>

> ---- Original Message ----

>

> To: Breathe-Support

> Sent: Mon, 17 Dec 2007 2:25 pm

> Subject: Re: I need some

> advice....(kind of urgent)

>

>

>

>

>

>

> Irene: Sher gets hot under the collar. I get hot

> under the collar. We

> all get hot under the collar. However, advocate for

> ourselves, manage

> our own medical care is reality.

>

> After my VATS, I was suppose to start walking early

> the next morning.

> One nurse was going to walk me, then she was tied up

> so another was,

> then I was moved to another floor and another was. I

> kept pushing and

> the nursing supervisor for the floor ended up

> walking me. I also got a

> very nice visit shortly thereafter from the Director

> of Nursing for the

> hospital. I had no more problems (Note: They didn't

> want me walking by

> myself as long as the tube was still in). I didn't

> like having to

> complain or raise it to another level, but walking

> soon and often was

> essential to my quick recovery and I wasn't going to

> have it

> compromised.

>

>

> >

> > Irene...I'm staggered when comments like yours,

> " nurses don't notify

> Dr. " come on board. If you know something is wrong

> INSIST on the floor

> supervisor and INSIST your Dr. be notified. Surely

> they know they are

> medically liable!!

> > Whooo I get so hot under the collar when we must

> advocate for

> ourselves!!

> > Sher; ipf 3-06; OR.

> > Don't fret about tomorrow, God is already there!

> >

>

>

>

>

>

>

________________________________________________________________________

> Meet the new AOL.ca. Free radio, music, videos, news

> & entertainment ? with a Canadian perspective.

>

________________________________________________________________________________\

____

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[Guest guest]

Hi thank you and for the hugs

My Infusion is on Wednesday morning

Irene Raynaud's Disease 09/07 PF 03/07 Canada

---- Original Message ----

To: Breathe-Support

Sent: Mon, 17 Dec 2007 11:22 pm

Subject: Re: Re: I need some advice....(kind of urgent)

I am so glad you spoke to the Dr . I am seeing my reg

Dr tomorrow for some blood tests and was going to ask

him about you but I wouldn't be home before you left

for your infusion. Please be very careful and speak up

if things aren't going right. I have been a wimp for

many years and what I have learned is the squeaky

wheel gets the oil. I wish you a speedy recovery and

send lots of hugs . I have a daughter your age and I

feel so bad for you and all the problems you've been

having . I pray for good thing to happen for you and

all of us in the new year. Take care

IPF2/07 IL

--- Irn3189aim wrote:

> Sher, Bruce

>

> I got in touch with my 2nd primary dr's office and

> was told I need to notify the nurses of what is

> going on and they have to keep a close eye on me and

> also told them what happenned last time. I'll keep a

> record of my vitals signs, if there's anything of

> worrysome I will tell them to get their act

> together.

>

> I told?my dr's office?that last time, when I asked

> the nurses to call your office they didn't....and I

> ended puking for 2 hours and nothing was given and

> no one even bothered to alert the ER physician. I

> kept asking the nurse did you notify my dr "She

> would always tell me of course I did and I was

> repeating myself everytime she walked in and the

> same answer of course I did!

>

> On another note, on Friday ER dr told me to return

> to emergency department if the pain persists, in

> order to repeat the ultrasound....which pain is

> persisting and left work early to go the hospital. I

> saw the ER dr, new one this time and tells me "it's

> to early to repeat the ultrasound, if pain persists

> come back next week".

>

> I asked him about the D-Dimmer results 1780

> High....he said with the Raynaud's Disease, PF and

> all of the other medical conditions I have it will

> always be very High. He also said "A Positive

> D-Dimmer is an indication of a Blood Clot somewhere

> in the body". The nurse even asked me if I was

> bleeding and I said NO!

>

> The ER dr also said continue to take Percocet for

> the pain whch was prescribed to me on Friday.

>

> Irene Raynaud's Disease 09/07 PF 03/07 Canada

>

> ---- Original Message ----

> From: Bruce Moreland <brucemorelandgmail>

> To: Breathe-Support

> Sent: Mon, 17 Dec 2007 2:25 pm

> Subject: Re: I need some

> advice....(kind of urgent)

>

>

>

>

>

>

> Irene: Sher gets hot under the collar. I get hot

> under the collar. We

> all get hot under the collar. However, advocate for

> ourselves, manage

> our own medical care is reality.

>

> After my VATS, I was suppose to start walking early

> the next morning.

> One nurse was going to walk me, then she was tied up

> so another was,

> then I was moved to another floor and another was. I

> kept pushing and

> the nursing supervisor for the floor ended up

> walking me. I also got a

> very nice visit shortly thereafter from the Director

> of Nursing for the

> hospital. I had no more problems (Note: They didn't

> want me walking by

> myself as long as the tube was still in). I didn't

> like having to

> complain or raise it to another level, but walking

> soon and often was

> essential to my quick recovery and I wasn't going to

> have it

> compromised.

>

>

> >

> > Irene...I'm staggered when comments like yours,

> "nurses don't notify

> Dr." come on board. If you know something is wrong

> INSIST on the floor

> supervisor and INSIST your Dr. be notified. Surely

> they know they are

> medically liable!!

> > Whooo I get so hot under the collar when we must

> advocate for

> ourselves!!

> > Sher; ipf 3-06; OR.

> > Don't fret about tomorrow, God is already there!

> >

>

>

>

>

>

>

__________________________________________________________

> Meet the new AOL.ca. Free radio, music, videos, news

> & entertainment ? with a Canadian perspective.

>

__________________________________________________________

Looking for last minute shopping deals?

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Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Irene... you can always double check anything you doubt with the drs office. If no call was made by nurse then don't hesitate to tell her that you wanted to know if she called and you were told no.

Also, if you're seeing a 'new' ER dr ask him to review the previous films or to contact your dr.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!