Re: Hypoxemic Respritory Failure due to HP

[Guest guest]

Lynn,

I do honestly believe that docs talk thier jargon so that we cannot be informed....that would put us on thier level...some of them are so haughty that they believe all thier patients are morons!!! I work really hard to educate myself so that I can ask intelligent questions and use some of the terminology so that they will talk to me like I have a brain in my head.

I have taken Methotrexate. It can cause lung scarring. And yes, the pul doc should have seen this!!

Yes, the doc has to say 'Respiratory Failure' to get oxygen for you. Any 02 reading while walking that falls under 89 is respiratory failure. Stay on the 02 until you can pass the walking test. I stayed on 02 for a few months after biopsy, then got off for a couple of years....then back on for good.

I do not believe HP is curable, but it can maybe be stalled with immunosuppressants. I think the 'standing water' remark was stupid!

Gere was in a movie about a doc getting cancer and the degradation in treatment. Docs should watch it! I believe a lot of them have a God complex!

Hang in there. Love talking with you!

Hugs,

Joyce PF 1997>> Hello all , I can't seem to get a straight answer out of my PulSpec > to sa...LOL!...I won't go there. Anyways...Question here; I've been > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1. > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter. > I've noticed that he wrote the "DX" on the script. It > says ".Hypoxemic Respritory Failure due to HP".> > #1 question - is that the reason most people are put on O2? Is it > HypResFai - a "catch all term"? He (my PulmSpec) has been real > casual about the whole thing. Told me all I hav eto do is stAy away > form standing water and I'll be O.K. I'm just curious, is HRF > something that goes away? Or is it the beganing of a chronic process > when the is no explaination for my PF?> > Question #2 I also, just happen to touch base with my RheumSpec and> told him of the HP DX. He immediatley took me off the methatrexate.> Said it can cause HP. Isnt that something my PulSpec should have> been on top of?> > #3 Shouldn't I be getting blood tests for ox sat? How does my> PulSpec know I still need O2 and what level?> > Any ideas? Thank you LynnA>

[Guest guest]

The phrase hypoxemic respiratory failure is a general one...kinda like saying you have the flu.....I don't know why a "doctor" would use this. But, what is HP?? I don't know what this is.....

--Diane Quinlan dianequinlan@... scoliosis/PF/2004

I wish I could answer the questions you have asked, but this is the first time I have heard of Hypoxemic Respritory failue due to HP,. so, if P. helps ya with this,

[Guest guest]

Oh Diane,

I like you.

It makes me so MAD when these stuff shirt docs talk down to patients. Especially those of us getting the really bad news and are scared out of our wits! I think HP is Hypersensitivity Pneumonitis....another name for the same thing.

I know that you have known docs who are consientious and kind. My lung doc is like that. He is smart, but talks my talk. He took time while I was in the hospital after biopsy to draw a picture for my family.

It just seems the bad outnumber the good!

Hugs,

Joyce PF 1997

>> The phrase hypoxemic respiratory failure is a general one...kinda like saying you have the flu.....I don't know why a "doctor" would use this. But, what is HP?? I don't know what this is.....> > --> Diane Quinlan > dianequinlan@... > scoliosis/PF/2004> > I wish I could answer the questions you have asked, but this is the first time I have heard of Hypoxemic Respritory failue due to HP,. so, if P. helps ya with this,>

[Guest guest]

Thanks for telling me what that meant....and as for those physicians....we need to demand that they answer our questions.....I think patients are much more educated than they used to be...I figure if we keep at them, they will either 1. be better physicians or 2. get frustrated and do something else!!!!!

If I were a physician who had to give bad news to someone, I would tell them in a kind way....give them time to absorb that information and then give them lots of stuff to read....then I'd have them come back in 4-5 days to ask their questions. To give someone bad news like PF and then have their next appointment in 3-6 months is nonsense. We need to remember that they are physicians, but also that WE hired THEM to care for us. WE are paying for their services....you wouldn't let someone at a department store treat you that way, would you?? Of course not....people need to get over the intimidation factor because they are doctors. And doctors need to remember that we are people, not diagnoses...not medical record numbers....PEOPLE. I know there are good physicians out there....you just have to keep looking for them. Don't give up!!

--Diane Quinlan dianequinlan@... scoliosis/PF/2004

-------------- Original message --------------

Oh Diane,

I like you.

It makes me so MAD when these stuff shirt docs talk down to patients. Especially those of us getting the really bad news and are scared out of our wits! I think HP is Hypersensitivity Pneumonitis....another name for the same thing.

I know that you have known docs who are consientious and kind. My lung doc is like that. He is smart, but talks my talk. He took time while I was in the hospital after biopsy to draw a picture for my family.

It just seems the bad outnumber the good!

Hugs,

Joyce PF 1997

[Guest guest]

Hi Diane, how are you? Thanks for responding. I like your bend on it. "because lots of time people don't breathe deeply after having the open lung biopsy because it's painful. " That makes sense. I don't think they want to pay for the pannel test, so I'm given a standard "pat" answer - "stay away from H2o". He did seem to follow the protical you have mentioned though. What has been difficult for me at Kaiser is "aftercare". I think he feels he has solved the problem and now I should go away, his job is done. LOL!! I finally got a printer for my laptop. Now I can up-date and print my list of meds, medical phone #'s, resouce list to carry with me to each appointment. I thought I had a good system there for a minute. I would email him questions before the appointment. We would always get sidetracked once in the office. From now on, I 'll email AND bring in a "hard" copy ot the list.

There are many schools of thought on life being "random" and life being an "inner connected sourse study". I believe a little bit of both. Some events are random, they have nothing to do with me, I was in the "wrong" or "right " place at the time. But the ones that arent random, I hope I have the good sense to stop, look and listen, to notice and learn something. Thank you for your encouragement Diane, you are right on time with reminding me to advocate for myself. Have a great day sweetie. Always a pleasure, LynnA

>> Lynn - I didn't see all of your post before I wrote earlier....as for the doctor telling you to stay away from standing water....was that a joke?? Is he a real physician?? I just can't believe what some of you tell me....it's a crime!!! > The pulmonary doctor put you on oxygen because lots of time people don't breathe deeply after having the open lung biopsy because it's painful. Did he ever check your pulse ox or do a pulmonary function test before you had the biopsy? That should be the order....xrays, PFT....then biopsy, if needed. And. yes, the pulmonary specialist should have known you were on Methotrexate....I know every time I go to the doctor, I have to list all my medications....if I have to do that, they better damn well be reading it!!!!! > I think you need to make a list of all your questions to ask the pulmonary doctor when you have your next appointment....and don't leave until you get answers. I would also ask why you have to avoid standing water....where do they get this stuff???? UGH!!!> Good luck to you....you really need to advocate for yourself!!! You cannot rely on trusting everything every doctor tells you. > > --> Diane Quinlan > dianequinlan@... > scoliosis/PF/2004>

[Guest guest]

Lynn, Here is my new approach to Kaiser and it is working. After I ask for something (LIKE OXYGEN!!!!!!) or a test and they deny it, I say very sweetly "Doctor can you please document on my chart that I have requested an angiocardigram (fillin the blank) because my heart hurts and you are denying me the treatment?" My doctor balked for a few minutes, told me I didn't need the test and then scheduled it in two weeks. For some reason Kaiser does not like giving oxygen or rehap-can't figure out why. Armede wrote: Hi Diane, how are you? Thanks for responding. I like your bend on it. "because lots of time people don't

breathe deeply after having the open lung biopsy because it's painful. " That makes sense. I don't think they want to pay for the pannel test, so I'm given a standard "pat" answer - "stay away from H2o". He did seem to follow the protical you have mentioned though. What has been difficult for me at Kaiser is "aftercare". I think he feels he has solved the problem and now I should go away, his job is done. LOL!! I finally got a printer for my laptop. Now I can up-date and print my list of meds, medical phone #'s, resouce list to carry with me to each appointment. I thought I had a good system there for a minute. I would email him questions before the appointment. We would always get sidetracked once in the office. From now on, I 'll email AND bring in a "hard" copy ot the list.

There are many schools of thought on life being "random" and life being an "inner connected sourse study". I believe a little bit of both. Some events are random, they have nothing to do with me, I was in the "wrong" or "right " place at the time. But the ones that arent random, I hope I have the good sense to stop, look and listen, to notice and learn something. Thank you for your encouragement Diane, you are right on time with reminding me to advocate for myself. Have a great day sweetie. Always a pleasure, LynnA >> Lynn - I didn't see all of

your post before I wrote earlier....as for the doctor telling you to stay away from standing water....was that a joke?? Is he a real physician?? I just can't believe what some of you tell me....it's a crime!!! > The pulmonary doctor put you on oxygen because lots of time people don't breathe deeply after having the open lung biopsy because it's painful. Did he ever check your pulse ox or do a pulmonary function test before you had the biopsy? That should be the order....xrays, PFT....then biopsy, if needed. And. yes, the pulmonary specialist should have known you were on Methotrexate....I know every time I go to the doctor, I have to list all my medications....if I have to do that, they better damn well be reading it!!!!! > I think you need to make a list of all your questions to ask the pulmonary doctor when you have your next appointment....and don't leave until you get answers. I would also ask why you have to avoid standing water....where do

they get this stuff???? UGH!!!> Good luck to you....you really need to advocate for yourself!!! You cannot rely on trusting everything every doctor tells you. > > --> Diane Quinlan > dianequinlan@... > scoliosis/PF/2004>

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[Guest guest]

Hi Joyce, I'll have to look for that movie. Thats one I gotta see. Sometimes I leave an appointment feeling like I was just part of a "Shell Game". LOL!!

I know you have a lot going on right now, but at another time I 'd like to hear about your experience with Methatrexate. How well it worked for you? Do you feel you had any adverse effects form it? I've began to wonder if my taking herbs to boost my immune system is working against taking an immunosuppressant? I can't wait untill my "walking test". I start PulRehab this month, I know that will make a difference.

You take care Joyce, its always a pleasure to touch base with you.

> >> > Hello all , I can't seem to get a straight answer out of my PulSpec> > to sa...LOL!...I won't go there. Anyways...Question here; I've been> > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1.> > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter.> > I've noticed that he wrote the "DX" on the script. It> > says ".Hypoxemic Respritory Failure due to HP".> >> > #1 question - is that the reason most people are put on O2? Is it> > HypResFai - a "catch all term"? He (my PulmSpec) has been real> > casual about the whole thing. Told me all I hav eto do is stAy away> > form standing water and I'll be O.K. I'm just curious, is HRF> > something that goes away? Or is it the beganing of a chronic process> > when the is no explaination for my PF?> >> > Question #2 I also, just happen to touch base with my RheumSpec and> > told him of the HP DX. He immediatley took me off the methatrexate.> > Said it can cause HP. Isnt that something my PulSpec should have> > been on top of?> >> > #3 Shouldn't I be getting blood tests for ox sat? How does my> > PulSpec know I still need O2 and what level?> >> > Any ideas? Thank you LynnA> >>

[Guest guest]

Hey, Armede: You know I have about come to the conclusion that I just need to do what I think is best for myself and to hell with the dr's, take one day at a time, and quit worrying about what I can't change. Apparently, the docs are of no use or of very little use. Barb in Ky ipf or pf / 11-05Armede wrote: Thank you Barb. You're a Sweetie. Sounds like you can relate. It's mindboggling isn't it. Where do they get them from???? Are we the only ones who notice they are "Clueless"? And I thought "I see dead people" was scary....but we seem to be privy to the ultimate terror!!!!!!!! I SEE INCOMPETENT DOCTORS!!!!!!!!!! Eeeeyyyyyy!!!!!!! limpin' lynn > Hello all , I can't seem to get a straight answer out of my PulSpec >

to sa...LOL!...I won't go there. Anyways...Question here; I've been > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1. > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter. > I've noticed that he wrote the "DX" on the script. It > says ".Hypoxemic Respritory Failure due to HP".> > #1 question - is that the reason most people are put on O2? Is it > HypResFai - a "catch all term"? He (my PulmSpec) has been real > casual about the whole thing. Told me all I hav eto do is stAy away > form standing water and I'll be O.K. I'm just curious, is HRF > something that goes away? Or is it the beganing of a chronic process > when the is no explaination for my PF?> > Question #2 I also, just happen to touch base with my RheumSpec and> told him of the HP DX. He immediatley took me off the methatrexate.> Said it can cause HP. Isnt that something

my PulSpec should have> been on top of?> > #3 Shouldn't I be getting blood tests for ox sat? How does my> PulSpec know I still need O2 and what level?> > Any ideas? Thank you LynnA> > > > > > > > >

[Guest guest]

THE DOCTOR 1991: Hurt is perfectly cast as an arrogant surgeon who treats patients like interchangeable cogs in the machinery of his medical practice. Then he is diagnosed with throat cancer and, as the title of the memoir on which it is based tells us, he gets a taste of his own medicine. The subplot involves the solidarity between doctors, which is shattered when the newly conscious physician discovers that one of his partners (Mandy Patinkin) is trying to cover up a case of malpractice. Hurt is solid, as is Crewson as the doctor who treats him and Perkins as a fellow cancer patient.

I'll bring the popcorn!!!

kiss kiss,

Ginger

IPF 9/04

[Guest guest]

Diane,

You are so smart! I learned from my prescription fiasco recently to put the insurance company or doc 'on the spot'. We talked about doctors being compensated for NOT ordering test, remember. UNREAL!

Joyce PF 1997> >> > Lynn - I didn't see all of your post before I wrote earlier....as for the doctor telling you to stay away from standing water....was that a joke?? Is he a real physician?? I just can't believe what some of you tell me....it's a crime!!! > > The pulmonary doctor put you on oxygen because lots of time people don't breathe deeply after having the open lung biopsy because it's painful. Did he ever check your pulse ox or do a pulmonary function test before you had the biopsy? That should be the order....xrays, PFT....then biopsy, if needed. And. yes, the pulmonary specialist should have known you were on Methotrexate....I know every time I go to the doctor, I have to list all my medications....if I have to do that, they better damn well be reading it!!!!! > > I think you need to make a list of all your questions to ask the pulmonary doctor when you have your next appointment....and don't leave until you get answers. I would also ask why you have to avoid standing water....where do they get this stuff???? UGH!!!> > Good luck to you....you really need to advocate for yourself!!! You cannot rely on trusting everything every doctor tells you. > > > > --> > Diane Quinlan > > dianequinlan@ > > scoliosis/PF/2004> >> > > >

[Guest guest]

Lynn,

Sorry, the movie does not have Gere (brain fog). It is Hurt, but here is the plot:

THE DOCTOR 1991: Hurt is perfectly cast as an arrogant surgeon who treats patients like interchangeable cogs in the machinery of his medical practice. Then he is diagnosed with throat cancer and, as the title of the memoir on which it is based tells us, he gets a taste of his own medicine. The subplot involves the solidarity between doctors, which is shattered when the newly conscious physician discovers that one of his partners (Mandy Patinkin) is trying to cover up a case of malpractice. Hurt is solid, as is Crewson as the doctor who treats him and Perkins as a fellow cancer patient.

> > >> > > Hello all , I can't seem to get a straight answer out of my PulSpec> > > to sa...LOL!...I won't go there. Anyways...Question here; I've been> > > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1.> > > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter.> > > I've noticed that he wrote the "DX" on the script. It> > > says ".Hypoxemic Respritory Failure due to HP".> > >> > > #1 question - is that the reason most people are put on O2? Is it> > > HypResFai - a "catch all term"? He (my PulmSpec) has been real> > > casual about the whole thing. Told me all I hav eto do is stAy away> > > form standing water and I'll be O.K. I'm just curious, is HRF> > > something that goes away? Or is it the beganing of a chronic process> > > when the is no explaination for my PF?> > >> > > Question #2 I also, just happen to touch base with my RheumSpec and> > > told him of the HP DX. He immediatley took me off the methatrexate.> > > Said it can cause HP. Isnt that something my PulSpec should have> > > been on top of?> > >> > > #3 Shouldn't I be getting blood tests for ox sat? How does my> > > PulSpec know I still need O2 and what level?> > >> > > Any ideas? Thank you LynnA> > >> >>

[Guest guest]

Lynn,

I am not a big 'herb' person, but then I am most unhealthy. I don't trust stuff that is not regulated...or stuff that is regulated! A lot of herbal meds do suposedly stimulate the immune system, which does not need to happen if you have an autoimmune disease or if you are taking drugs like Methotrexate to suppress the immune system.

I took Methotrexate for a few years back before lung disease. I could not tolerate enough of it to do any good and they finally took me off. It is a wonderful drug for RA and other autoimmune diseases, but does have side effects. I don't know if it harmed my lungs. I doubt it, since I never was able to take a full dose. I have taken a lot of caustic drugs, but felt I didn't have a choice.

Hugs,

Joyce PF 1997

> > >> > > Hello all , I can't seem to get a straight answer out of my PulSpec> > > to sa...LOL!...I won't go there. Anyways...Question here; I've been> > > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1.> > > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter.> > > I've noticed that he wrote the "DX" on the script. It> > > says ".Hypoxemic Respritory Failure due to HP".> > >> > > #1 question - is that the reason most people are put on O2? Is it> > > HypResFai - a "catch all term"? He (my PulmSpec) has been real> > > casual about the whole thing. Told me all I hav eto do is stAy away> > > form standing water and I'll be O.K. I'm just curious, is HRF> > > something that goes away? Or is it the beganing of a chronic process> > > when the is no explaination for my PF?> > >> > > Question #2 I also, just happen to touch base with my RheumSpec and> > > told him of the HP DX. He immediatley took me off the methatrexate.> > > Said it can cause HP. Isnt that something my PulSpec should have> > > been on top of?> > >> > > #3 Shouldn't I be getting blood tests for ox sat? How does my> > > PulSpec know I still need O2 and what level?> > >> > > Any ideas? Thank you LynnA> > >> >>

[Guest guest]

Hey, What is the name of that movie. It sounds like a good one. Barb in KYJoyce wrote: Lynn, Sorry, the movie does not have Gere (brain fog). It is Hurt, but here is the plot: THE DOCTOR 1991: Hurt is perfectly cast as an arrogant surgeon who treats patients like interchangeable cogs in the machinery of his medical practice. Then he is diagnosed with throat cancer and, as the title of the memoir on which it is based tells us, he gets a taste of his own medicine. The subplot involves the solidarity between doctors, which is shattered when the newly

conscious physician discovers that one of his partners (Mandy Patinkin) is trying to cover up a case of malpractice. Hurt is solid, as is Crewson as the doctor who treats him and Perkins as a fellow cancer patient. > > >> > > Hello all , I can't seem to get a

straight answer out of my PulSpec> > > to sa...LOL!...I won't go there. Anyways...Question here; I've been> > > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1.> > > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter.> > > I've noticed that he wrote the "DX" on the script. It> > > says ".Hypoxemic Respritory Failure due to HP".> > >> > > #1 question - is that the reason most people are put on O2? Is it> > > HypResFai - a "catch all term"? He (my PulmSpec) has been real> > > casual about the whole thing. Told me all I hav eto do is stAy away> > > form standing water and I'll be O.K. I'm just curious, is HRF> > > something that goes away? Or is it the beganing of a chronic process> > > when the is no explaination for my PF?> > >> > > Question #2 I also, just

happen to touch base with my RheumSpec and> > > told him of the HP DX. He immediatley took me off the methatrexate.> > > Said it can cause HP. Isnt that something my PulSpec should have> > > been on top of?> > >> > > #3 Shouldn't I be getting blood tests for ox sat? How does my> > > PulSpec know I still need O2 and what level?> > >> > > Any ideas? Thank you LynnA> > >> >>

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[Guest guest]

The name of the movie, Barb, is THE DOCTOR. Hurt 1991. I think I met this doc and his partners a few times in my life.

Hugs,

Joyce > > > >> > > > Hello all , I can't seem to get a straight answer out of my PulSpec> > > > to sa...LOL!...I won't go there. Anyways...Question here; I've been> > > > on O2 , 24/7 since coming out of surgery for open lung biop on 5/1.> > > > On 5/22 I saw my PulSPec & asked for a script for a pulse Oximeter.> > > > I've noticed that he wrote the "DX" on the script. It> > > > says ".Hypoxemic Respritory Failure due to HP".> > > >> > > > #1 question - is that the reason most people are put on O2? Is it> > > > HypResFai - a "catch all term"? He (my PulmSpec) has been real> > > > casual about the whole thing. Told me all I hav eto do is stAy away> > > > form standing water and I'll be O.K. I'm just curious, is HRF> > > > something that goes away? Or is it the beganing of a chronic process> > > > when the is no explaination for my PF?> > > >> > > > Question #2 I also, just happen to touch base with my RheumSpec and> > > > told him of the HP DX. He immediatley took me off the methatrexate.> > > > Said it can cause HP. Isnt that something my PulSpec should have> > > > been on top of?> > > >> > > > #3 Shouldn't I be getting blood tests for ox sat? How does my> > > > PulSpec know I still need O2 and what level?> > > >> > > > Any ideas? Thank you LynnA> > > >> > >> >> > > >