Re: I want to scream, I need to keep my energy!....I apologize in advance for Venting!

January 24, 2008

IRene, I am sorrry you continue to go through all this stuff! Your

hospital sounds like the hospital I had been at for the last 2

years. It was a great little country hosptial and clinic, if your

NOT SICK with anything major accept they do have 2 great surgeons and

they did a fine job. But the other doctors and did exactly the same

thing. After my last hospital stay it was decided that I just cant

go to that hospital even in an emergency because next time I might

not be so lucky.

Is there a different hospital you can go to? How about getting into

see some one who deals with blood clots and stuff, sounds like you

need to be regularly monitored for that.

Way to stand up for yourself!

Take care!

Sandie

>

> Hi my friends,

>

> I want to scream on top of my lungs, I need to keep my energy

levels stable.....one suggestion though when your dr's?writes a

referral for a test better check the paper and once at the

appointment ask to see for the test that was ordered, if it's not

what?you have discussed with your dr....call your dr ASAP.

>

> At X-Rays does your PF show or it comes back Normal?? Does it

always show even if it's in the early stages of the disease?

>

> As you know I had CT Scan of the Lungs last week to check if my?PF

is stable, has progressed....Wishfull thinking if it's gone lol!

>

> I got a copy of the CT Scan report, as I said I'm still upset, I

have to keep my energy levels stable because tonight in ER they

couldn't rule out if a blood is present or not. Once again I received

Blood Thinners. SOB is getting worse and if I treat to breath

in/breathe out a lot of times, I get very dizzy.

>

> Why I'm so upset:

> CT Scan was supposed to check if my PF was stable, progressed

etc...and compared it to the previous one?in March/07.

>

> What do they check me for:

> Rule out Pulmonary Stenosis, no previous comparison for CT Scan for

Pulmonary Stenosis....

>

> For some of you that may want to know what the results: Mild

subsegmemental atelectasis at the bases bilaterally. Normal Pulmonary

artery on CT. If there is oigoing clinical concern regarding

pulmonary artery stenosis, a functional study using echocardiogram or

MRI is suggested.

>

> Asked my GP, I said why did they check me for Pulmonary

Stenosis....it was supposed to be Pulmonary Fibrosis. The office told

me they?called and confirmed?x3 with technician it was Pulmonary

Fibrosis. Asked her to re-do the CT Scan with the right diagnosis she

said " NO " .

>

> Anyways, before I went over to the hospital, I called them and left

a message " How can you make a mistake like that, when it was

confirmed several times, you were supposed to check for Pulmonary

Fibrosis. " I went over to the hospital with the copy of the CT and

spoke with the person who made the actual appointment....said she

never received a call confirming the diagnosis....and was apologizing

to me....

>

> I told her please stop don't apologize to me or make excuses

because this is a mistake you made and I demand you fix it now and re-

do the CT Scan as it was supposed to be done originally. She said dr

has to re-order it again....I said my dr won't do it again! So what

are you going to about it....

>

> She started apologizing again and once again I told her " please

this is a mistake you made and I wanted fixed now " ...Anyways she

called the Head of CT and I spoke to her....

>

> I said to the head of CT, I want you to go back and review the CT

Scan and check for the Pulmonary Fibrosis and I want you to compare

it with the previous one from March/07.

>

> She said it will take 3 days for the comparison to be made because

they have to e-mail the radiologist. As I was talking to her and to

another person because I was standing, I was feeling very faint.

>

> Had a nurse check my Oxygen level it was stable..I was seen anyways

by the ER physician, and apparently he couldn't rule out a blood

clot. So tommorrow morning I have to return back for the CT

Scan...because apparently the machine was not working and if

tommorrow morning it's not working, I will have to go back at night.

>

> I received an injection of blood thinners again...I have to watch

out for bleeding

>

> Yesterday I had my follow up PFT's nothing much has

changed...that's what the RT told me.

> DLCO from 74% is up to 79%

> FEV1 from 104 has dropped down to 103

> FVC from 108 has dropped down to 105

> TLC from 81% has dropped to 80%

> VC from 108 has dropped down 105

> ERV from 123 has dropped down to 101

> GAW from 89, it has dropped down to 76

>

> FIVC from 96 it has dropped down to 89

> FEF 25%: from 94 has dropped down to 92

> FEF50%: from 124 has dropped down to 117

> FRC PL: from 90 it has dropped down to 79

> PIF: from 3.68 has dropped down to 2.19

>

> PEF: 90 no change

> VA from 4.19 has dropped down to?4.16

> IVC from 3.27 has dropped down to 3.16

>

> Please once again, read the medical papers....to make sure you're

receiving the treatment you're supposed too....even if you trust that

person writting them up.

>

> Take Care All

> Irene

> Raynaud's Disease 09/07

> PF 03/07 Canada

>

______________________________________________________________________

__

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

entertainment ? with a Canadian perspective.

>

January 25, 2008

Hi Sandie,

I partly blame the hospital and partly blame my dr because instead of her writing Pulmonary Fibrosis on the referral paper she wrote Pulmonary Stenosis. Thinking by doing that, at the same time, they will see the PF. Yesterday, I asked the readiologist and he said "NO", because we were not concentrating on your PF condition.

Yes! I'm waiting for an appointment with the new lung dr, which is in a different hospital. I just need to fax in my chart, since he already got the referral paper.

Thanks take care of yourself too

Irene

PF 03/07

Raynaud's Disease 09/07

RS3PE (Remitting Seronegative Synnovitis Symmetrical with Pitting Edema) Jan/08

---- Original Message ----

To: Breathe-Support

Sent: Thu, 24 Jan 2008 9:22 am

Subject: Re: I want to scream, I need to keep my energy!....I apologize in advance for Venting!

IRene, I am sorrry you continue to go through all this stuff! Your

hospital sounds like the hospital I had been at for the last 2

years. It was a great little country hosptial and clinic, if your

NOT SICK with anything major accept they do have 2 great surgeons and

they did a fine job. But the other doctors and did exactly the same

thing. After my last hospital stay it was decided that I just cant

go to that hospital even in an emergency because next time I might

not be so lucky.

Is there a different hospital you can go to? How about getting into

see some one who deals with blood clots and stuff, sounds like you

need to be regularly monitored for that.

Way to stand up for yourself!

Take care!

Sandie

>

> Hi my friends,

>

> I want to scream on top of my lungs, I need to keep my energy

levels stable.....one suggestion though when your dr's?writes a

referral for a test better check the paper and once at the

appointment ask to see for the test that was ordered, if it's not

what?you have discussed with your dr....call your dr ASAP.

>

> At X-Rays does your PF show or it comes back Normal?? Does it

always show even if it's in the early stages of the disease?

>

> As you know I had CT Scan of the Lungs last week to check if my?PF

is stable, has progressed....Wishfull thinking if it's gone lol!

>

> I got a copy of the CT Scan report, as I said I'm still upset, I

have to keep my energy levels stable because tonight in ER they

couldn't rule out if a blood is present or not. Once again I received

Blood Thinners. SOB is getting worse and if I treat to breath

in/breathe out a lot of times, I get very dizzy.

>

> Why I'm so upset:

> CT Scan was supposed to check if my PF was stable, progressed

etc...and compared it to the previous one?in March/07.

>

> What do they check me for:

> Rule out Pulmonary Stenosis, no previous comparison for CT Scan for

Pulmonary Stenosis....

>

> For some of you that may want to know what the results: Mild

subsegmemental atelectasis at the bases bilaterally. Normal Pulmonary

artery on CT. If there is oigoing clinical concern regarding

pulmonary artery stenosis, a functional study using echocardiogram or

MRI is suggested.

>

> Asked my GP, I said why did they check me for Pulmonary

Stenosis....it was supposed to be Pulmonary Fibrosis. The office told

me they?called and confirmed?x3 with technician it was Pulmonary

Fibrosis. Asked her to re-do the CT Scan with the right diagnosis she

said "NO".

>

> Anyways, before I went over to the hospital, I called them and left

a message "How can you make a mistake like that, when it was

confirmed several times, you were supposed to check for Pulmonary

Fibrosis." I went over to the hospital with the copy of the CT and

spoke with the person who made the actual appointment....said she

never received a call confirming the diagnosis....and was apologizing

to me....

>

> I told her please stop don't apologize to me or make excuses

because this is a mistake you made and I demand you fix it now and re-

do the CT Scan as it was supposed to be done originally. She said dr

has to re-order it again....I said my dr won't do it again! So what

are you going to about it....

>

> She started apologizing again and once again I told her "please

this is a mistake you made and I wanted fixed now"...Anyways she

called the Head of CT and I spoke to her....

>

> I said to the head of CT, I want you to go back and review the CT

Scan and check for the Pulmonary Fibrosis and I want you to compare

it with the previous one from March/07.

>

> She said it will take 3 days for the comparison to be made because

they have to e-mail the radiologist. As I was talking to her and to

another person because I was standing, I was feeling very faint.

>

> Had a nurse check my Oxygen level it was stable..I was seen anyways

by the ER physician, and apparently he couldn't rule out a blood

clot. So tommorrow morning I have to return back for the CT

Scan...because apparently the machine was not working and if

tommorrow morning it's not working, I will have to go back at night.

>

> I received an injection of blood thinners again...I have to watch

out for bleeding

>

> Yesterday I had my follow up PFT's nothing much has

changed...that's what the RT told me.

> DLCO from 74% is up to 79%

> FEV1 from 104 has dropped down to 103

> FVC from 108 has dropped down to 105

> TLC from 81% has dropped to 80%

> VC from 108 has dropped down 105

> ERV from 123 has dropped down to 101

> GAW from 89, it has dropped down to 76

>

> FIVC from 96 it has dropped down to 89

> FEF 25%: from 94 has dropped down to 92

> FEF50%: from 124 has dropped down to 117

> FRC PL: from 90 it has dropped down to 79

> PIF: from 3.68 has dropped down to 2.19

>

> PEF: 90 no change

> VA from 4.19 has dropped down to?4.16

> IVC from 3.27 has dropped down to 3.16

>

> Please once again, read the medical papers....to make sure you're

receiving the treatment you're supposed too....even if you trust that

person writting them up.

>

> Take Care All

> Irene

> Raynaud's Disease 09/07

> PF 03/07 Canada

>

__________________________________________________________

__

> 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.

January 25, 2008

Irene: Did you return for a CT when they couldn't rule out blood

clots, since their machine was not working? If so, what were those

results? I am glad you were able to pinpoint the CT mistake. It's

unfortunate we have to continue fixing the medical providers'

mistakes. It's even more unfortunate no one will help in this

regard. And, it's even more unfortunate we continue to live a less

than normal life while doing all of this. Take care of yourself and

get the medical attention you need.

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

> >

> > Hi my friends,

> >

> > I want to scream on top of my lungs, I need to keep my energy

> levels stable.....one suggestion though when your dr's?writes a

> referral for a test better check the paper and once at the

> appointment ask to see for the test that was ordered, if it's not

> what?you have discussed with your dr....call your dr ASAP.

> >

> > At X-Rays does your PF show or it comes back Normal?? Does it

> always show even if it's in the early stages of the disease?

> >

> > As you know I had CT Scan of the Lungs last week to check if my?

PF

> is stable, has progressed....Wishfull thinking if it's gone lol!

> >

> > I got a copy of the CT Scan report, as I said I'm still upset, I

> have to keep my energy levels stable because tonight in ER they

> couldn't rule out if a blood is present or not. Once again I

received

> Blood Thinners. SOB is getting worse and if I treat to breath

> in/breathe out a lot of times, I get very dizzy.

> >

> > Why I'm so upset:

> > CT Scan was supposed to check if my PF was stable, progressed

> etc...and compared it to the previous one?in March/07.

> >

> > What do they check me for:

> > Rule out Pulmonary Stenosis, no previous comparison for CT Scan

for

> Pulmonary Stenosis....

> >

> > For some of you that may want to know what the results: Mild

> subsegmemental atelectasis at the bases bilaterally. Normal

Pulmonary

> artery on CT. If there is oigoing clinical concern regarding

> pulmonary artery stenosis, a functional study using echocardiogram

or

> MRI is suggested.

> >

> > Asked my GP, I said why did they check me for Pulmonary

> Stenosis....it was supposed to be Pulmonary Fibrosis. The office

told

> me they?called and confirmed?x3 with technician it was Pulmonary

> Fibrosis. Asked her to re-do the CT Scan with the right diagnosis

she

> said " NO " .

> >

> > Anyways, before I went over to the hospital, I called them and

left

> a message " How can you make a mistake like that, when it was

> confirmed several times, you were supposed to check for Pulmonary

> Fibrosis. " I went over to the hospital with the copy of the CT and

> spoke with the person who made the actual appointment....said she

> never received a call confirming the diagnosis....and was

apologizing

> to me....

> >

> > I told her please stop don't apologize to me or make excuses

> because this is a mistake you made and I demand you fix it now and

re-

> do the CT Scan as it was supposed to be done originally. She said

dr

> has to re-order it again....I said my dr won't do it again! So

what

> are you going to about it....

> >

> > She started apologizing again and once again I told her " please

> this is a mistake you made and I wanted fixed now " ...Anyways she

> called the Head of CT and I spoke to her....

> >

> > I said to the head of CT, I want you to go back and review the

CT

> Scan and check for the Pulmonary Fibrosis and I want you to

compare

> it with the previous one from March/07.

> >

> > She said it will take 3 days for the comparison to be made

because

> they have to e-mail the radiologist. As I was talking to her and

to

> another person because I was standing, I was feeling very faint.

> >

> > Had a nurse check my Oxygen level it was stable..I was seen

anyways

> by the ER physician, and apparently he couldn't rule out a blood

> clot. So tommorrow morning I have to return back for the CT

> Scan...because apparently the machine was not working and if

> tommorrow morning it's not working, I will have to go back at

night.

> >

> > I received an injection of blood thinners again...I have to

watch

> out for bleeding

> >

> > Yesterday I had my follow up PFT's nothing much has

> changed...that's what the RT told me.

> > DLCO from 74% is up to 79%

> > FEV1 from 104 has dropped down to 103

> > FVC from 108 has dropped down to 105

> > TLC from 81% has dropped to 80%

> > VC from 108 has dropped down 105

> > ERV from 123 has dropped down to 101

> > GAW from 89, it has dropped down to 76

> >

> > FIVC from 96 it has dropped down to 89

> > FEF 25%: from 94 has dropped down to 92

> > FEF50%: from 124 has dropped down to 117

> > FRC PL: from 90 it has dropped down to 79

> > PIF: from 3.68 has dropped down to 2.19

> >

> > PEF: 90 no change

> > VA from 4.19 has dropped down to?4.16

> > IVC from 3.27 has dropped down to 3.16

> >

> > Please once again, read the medical papers....to make sure

you're

> receiving the treatment you're supposed too....even if you trust

that

> person writting them up.

> >

> > Take Care All

> > Irene

> > Raynaud's Disease 09/07

> > PF 03/07 Canada

> >

> __________________________________________________________

> __

> > 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.

>

January 25, 2008

Just shows the US doesn't have the market cornered on incompetency or

rudeness or any of the other medical ills. And the referral process

in Canada is a nightmare. I want to scream loud enough for to wake

the medical profession, and I do use the term profession somewhat

loosely at this point as it would imply professionalism, in both

countries.

I've read articles and stories from retirees claiming their medical

care was better in Panama than when they were in the U.S. or better

in Thailand than in Canada. I didn't believe them, but now I'm not

sure I wasn't too soon to doubt. Oh, I know we have equipment and the

more advanced procedures and the research, but 99% of whats required

isn't that.

> > >

> > > Hi my friends,

> > >

> > > I want to scream on top of my lungs, I need to keep my energy

> > levels stable.....one suggestion though when your dr's?writes a

> > referral for a test better check the paper and once at the

> > appointment ask to see for the test that was ordered, if it's not

> > what?you have discussed with your dr....call your dr ASAP.

> > >

> > > At X-Rays does your PF show or it comes back Normal?? Does it

> > always show even if it's in the early stages of the disease?

> > >

> > > As you know I had CT Scan of the Lungs last week to check if my?

> PF

> > is stable, has progressed....Wishfull thinking if it's gone lol!

> > >

> > > I got a copy of the CT Scan report, as I said I'm still upset,

I

> > have to keep my energy levels stable because tonight in ER they

> > couldn't rule out if a blood is present or not. Once again I

> received

> > Blood Thinners. SOB is getting worse and if I treat to breath

> > in/breathe out a lot of times, I get very dizzy.

> > >

> > > Why I'm so upset:

> > > CT Scan was supposed to check if my PF was stable, progressed

> > etc...and compared it to the previous one?in March/07.

> > >

> > > What do they check me for:

> > > Rule out Pulmonary Stenosis, no previous comparison for CT Scan

> for

> > Pulmonary Stenosis....

> > >

> > > For some of you that may want to know what the results: Mild

> > subsegmemental atelectasis at the bases bilaterally. Normal

> Pulmonary

> > artery on CT. If there is oigoing clinical concern regarding

> > pulmonary artery stenosis, a functional study using

echocardiogram

> or

> > MRI is suggested.

> > >

> > > Asked my GP, I said why did they check me for Pulmonary

> > Stenosis....it was supposed to be Pulmonary Fibrosis. The office

> told

> > me they?called and confirmed?x3 with technician it was Pulmonary

> > Fibrosis. Asked her to re-do the CT Scan with the right diagnosis

> she

> > said " NO " .

> > >

> > > Anyways, before I went over to the hospital, I called them and

> left

> > a message " How can you make a mistake like that, when it was

> > confirmed several times, you were supposed to check for Pulmonary

> > Fibrosis. " I went over to the hospital with the copy of the CT

and

> > spoke with the person who made the actual appointment....said she

> > never received a call confirming the diagnosis....and was

> apologizing

> > to me....

> > >

> > > I told her please stop don't apologize to me or make excuses

> > because this is a mistake you made and I demand you fix it now

and

> re-

> > do the CT Scan as it was supposed to be done originally. She said

> dr

> > has to re-order it again....I said my dr won't do it again! So

> what

> > are you going to about it....

> > >

> > > She started apologizing again and once again I told her " please

> > this is a mistake you made and I wanted fixed now " ...Anyways she

> > called the Head of CT and I spoke to her....

> > >

> > > I said to the head of CT, I want you to go back and review the

> CT

> > Scan and check for the Pulmonary Fibrosis and I want you to

> compare

> > it with the previous one from March/07.

> > >

> > > She said it will take 3 days for the comparison to be made

> because

> > they have to e-mail the radiologist. As I was talking to her and

> to

> > another person because I was standing, I was feeling very faint.

> > >

> > > Had a nurse check my Oxygen level it was stable..I was seen

> anyways

> > by the ER physician, and apparently he couldn't rule out a blood

> > clot. So tommorrow morning I have to return back for the CT

> > Scan...because apparently the machine was not working and if

> > tommorrow morning it's not working, I will have to go back at

> night.

> > >

> > > I received an injection of blood thinners again...I have to

> watch

> > out for bleeding

> > >

> > > Yesterday I had my follow up PFT's nothing much has

> > changed...that's what the RT told me.

> > > DLCO from 74% is up to 79%

> > > FEV1 from 104 has dropped down to 103

> > > FVC from 108 has dropped down to 105

> > > TLC from 81% has dropped to 80%

> > > VC from 108 has dropped down 105

> > > ERV from 123 has dropped down to 101

> > > GAW from 89, it has dropped down to 76

> > >

> > > FIVC from 96 it has dropped down to 89

> > > FEF 25%: from 94 has dropped down to 92

> > > FEF50%: from 124 has dropped down to 117

> > > FRC PL: from 90 it has dropped down to 79

> > > PIF: from 3.68 has dropped down to 2.19

> > >

> > > PEF: 90 no change

> > > VA from 4.19 has dropped down to?4.16

> > > IVC from 3.27 has dropped down to 3.16

> > >

> > > Please once again, read the medical papers....to make sure

> you're

> > receiving the treatment you're supposed too....even if you trust

> that

> > person writting them up.

> > >

> > > Take Care All

> > > Irene

> > > Raynaud's Disease 09/07

> > > PF 03/07 Canada

> > >

> > __________________________________________________________

> > __

> > > 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.

> >

>

January 26, 2008

Yes I did return for the CT Scan were the machine wasn't working. I'm cleared for a PE. The day before they gave a me shot of Blood Thinners and at the moment I'm having severe abdominal cramps. It might also be that I lost 15 pounds and I'm still a bit week. (no I'm not dieting).

I did get though the hospital and the radiologists to compare Jan 15th/08 CT Scan with the one on March 23rd/07. By early next week. I was so mad & upset and I did tell me "Look it's your mistake, please don't apologize to me, because at this moment it totally means nothing to me and I want you to fix it now". I'm also making sure that they do follow up, on what they're supposed to do.

Irene

---- Original Message ----

To: Breathe-Support

Sent: Sat, 26 Jan 2008 12:58 am