Re: Re : PH Question

[Guest guest]

Diane,

I am as baffled as you are regarding your doctors reasoning. It seems logical to me that unless your PH is very mild it makes sense to treat it.

I know we've discussed this previously but it might be a good idea for you to find a way to be evaluated at a major university medical center where there are specialists in interstitial lung disease. I worry about the care you are receiving.

I hope that you also have a much healthier New Year!!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

HAPPY NEW YEAR!!

To: Breathe-Support Sent: Wednesday, December 31, 2008 7:04:28 PMSubject: Re : PH Question

I am still trying to get doctors to put me on SOMETHING for the PH I was diagnosed with in October but actually have had since June. The doctor is hesitant because he doesn't want me passing out or something... Where is his head. So there is no treatment for me??? I am having a bad time with breathing for a few months now and I think I have heard from others it would help being on this type of medicine not only the breathing, but allow me to walk around better with less SOB. Talk about mismanaged care- I have been on 4LPM since June of 2007. The oxygen company told me today they only received a script for 2 LPM. Our power was out and I asked them to call the doctor since I was saving my cell phone for emergencies. But imagine that-all this time and the doc doesn't even KNOW what I am on??? I see him every 2 months! Guess I have to make some serious decisions here-soon. Getting pretty sucky breathing. Bad enough with the muscle disease and trying to

fight everything all at once. Thanks for listening... .wish doctors were better around here........ ...I HOPE EVERYONE HAS A HAPPY HEALTHIER NEW YEAR! Diane PF,Raynauds, Sjorgrens, PM 2006 PH 2008

[Guest guest]

Diane

Two words: NEW DOCTORS

Communication is part of it. It's obvious you are not comfortable with

your current medical care. Change. As to your liter flow, do you have an

oximeter and are you checking? It is quite unusual for any of us with PF

to need the same flow stationary as we require with activity. We

generally have to find what we require ourselves too and communicate

that with out doctor.

>

> I am still trying to get doctors to put me on SOMETHING for the PH I

was diagnosed with in October but actually have had since June. The

doctor is hesitant because he doesn't want me passing out or

something...Where is his head. So there is no treatment for me??? I am

having a bad time with breathing for a few months now and I think I have

heard from others it would help being on this type of medicine not only

the breathing, but allow me to walk around better with less SOB. Talk

about mismanaged care- I have been on 4LPM since June of 2007. The

oxygen company told me today they only received a script for 2 LPM. Our

power was out and I asked them to call the doctor since I was saving my

cell phone for emergencies. But imagine that-all this time and the doc

doesn't even KNOW what I am on??? I see him every 2 months! Guess I

have to make some serious decisions here-soon. Getting pretty sucky

breathing. Bad enough with the muscle disease and trying to fight

everything all at once. Thanks for listening....wish doctors were better

around here...........

> I HOPE EVERYONE HAS A HAPPY HEALTHIER NEW YEAR!

> Diane PF,Raynauds,Sjorgrens,PM 2006 PH 2008

>

[Guest guest]

Diane...yes, get thee quickly to another dr! Preferably a Pulmonologist and better yet,

ditto to MB, go to a major medical center if you are near one.

We'll all be worried about the care you are receiving!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re : PH Question

I am still trying to get doctors to put me on SOMETHING for the PH I was diagnosed with in October but actually have had since June. The doctor is hesitant because he doesn't want me passing out or something... Where is his head. So there is no treatment for me??? I am having a bad time with breathing for a few months now and I think I have heard from others it would help being on this type of medicine not only the breathing, but allow me to walk around better with less SOB. Talk about mismanaged care- I have been on 4LPM since June of 2007. The oxygen company told me today they only received a script for 2 LPM. Our power was out and I asked them to call the doctor since I was saving my cell phone for emergencies. But imagine that-all this time and the doc doesn't even KNOW what I am on??? I see him every 2 months! Guess I have to make some serious decisions here-soon. Getting pretty sucky breathing. Bad enough with the muscle disease and trying to fight everything all at once. Thanks for listening... .wish doctors were better around here........ ...I HOPE EVERYONE HAS A HAPPY HEALTHIER NEW YEAR! Diane PF,Raynauds, Sjorgrens, PM 2006 PH 2008

[Guest guest]

Diane...yes, get thee quickly to another dr! Preferably a Pulmonologist and better yet,

ditto to MB, go to a major medical center if you are near one.

We'll all be worried about the care you are receiving!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re : PH Question

I am still trying to get doctors to put me on SOMETHING for the PH I was diagnosed with in October but actually have had since June. The doctor is hesitant because he doesn't want me passing out or something... Where is his head. So there is no treatment for me??? I am having a bad time with breathing for a few months now and I think I have heard from others it would help being on this type of medicine not only the breathing, but allow me to walk around better with less SOB. Talk about mismanaged care- I have been on 4LPM since June of 2007. The oxygen company told me today they only received a script for 2 LPM. Our power was out and I asked them to call the doctor since I was saving my cell phone for emergencies. But imagine that-all this time and the doc doesn't even KNOW what I am on??? I see him every 2 months! Guess I have to make some serious decisions here-soon. Getting pretty sucky breathing. Bad enough with the muscle disease and trying to fight everything all at once. Thanks for listening... .wish doctors were better around here........ ...I HOPE EVERYONE HAS A HAPPY HEALTHIER NEW YEAR! Diane PF,Raynauds, Sjorgrens, PM 2006 PH 2008

[Guest guest]

Diane...yes, get thee quickly to another dr! Preferably a Pulmonologist and better yet,

ditto to MB, go to a major medical center if you are near one.

We'll all be worried about the care you are receiving!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re : PH Question

I am still trying to get doctors to put me on SOMETHING for the PH I was diagnosed with in October but actually have had since June. The doctor is hesitant because he doesn't want me passing out or something... Where is his head. So there is no treatment for me??? I am having a bad time with breathing for a few months now and I think I have heard from others it would help being on this type of medicine not only the breathing, but allow me to walk around better with less SOB. Talk about mismanaged care- I have been on 4LPM since June of 2007. The oxygen company told me today they only received a script for 2 LPM. Our power was out and I asked them to call the doctor since I was saving my cell phone for emergencies. But imagine that-all this time and the doc doesn't even KNOW what I am on??? I see him every 2 months! Guess I have to make some serious decisions here-soon. Getting pretty sucky breathing. Bad enough with the muscle disease and trying to fight everything all at once. Thanks for listening... .wish doctors were better around here........ ...I HOPE EVERYONE HAS A HAPPY HEALTHIER NEW YEAR! Diane PF,Raynauds, Sjorgrens, PM 2006 PH 2008