Re: Got me goin' in circles!!!Asbestosis,sarcoidosis, idiopathic, RA lung...

[Guest guest]

Peggy;

Ipf generally has no known cause, idiopapathic means unknown source. they believe there are certain things that can cause it,metal dust coal dust wood dust and a few other things but they as yet have been unable to put their finger on an exact cause. Pulmonary fibrosis can usually be identified to a source cause and be treated. I hope this helps. If not ask away. I'll answer what I can. I'm no doctor , I've just done a lot of research on interstitial lung diseases. I have two, perhaps three, brothers with sarcoidosis and I have ipf. All of these are ild's. Were trying to learn and do as much as we can to make sure future generations don't get these diseases. God bless.

Gordon ipf 12/03

Re: Got me goin' in circles!!! Asbestosis,sarcoidosis, idiopathic, RA lung...WOW you have been through the proverbial mill and a half. Where were you? It sounds like a third world country ran by an HMO. Get yourself an oximeter and keep up with your saturation yourself. As far as the DX its PF regardless of the name they put on it, right?I have read somewhere they call it farmers lung because farmers get PF from the mold and mildew in the hay.So they may be thinking you've been exposed to mold for an extended time.. WHERE was your Dr. during all this? I'm thinking your way over due for a specialist..I also don't believe you can become dependant on OX. you need it or not.Keep in mind I am not a Dr. But it sounds like you need one.. God Bless You, Prayerfully Peggyon 5/10/06 4:35 PM, Armede at armede@... wrote:

Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again anytime soon. I'm counting my blessings though. I'm doing pretty well considering. It was incredably painful and confusing. I was discharged without being given any instuctions on wound care, or date of staple extraction. They have me on OX, 24/7 for a month.(24/7 according to on respritory therapist - another said not to use 24/7 of I'll become dependant on it) As to the level of OX, I was told to look at the meter on my hospital room wall (that day it said 1.5 - some days it was set at 2.5) and that was the number I should set my flow to. AKKKK!! I can't believe I made it out alive. I know I wouldnt have with out the love, thoughts and prayers I have been receiving. Soooo, just got a call from my Pul Spec. They must have added a new reasons for my Pul.Fibro. to the dart board they use because now they say I have "Farmers Lung". LOL!!!!!!! We've gone from asbestosis to silicosis (I was a quartz worker for 10 years) to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular disease to Farmers lung. Now mind you - I have never spent a DAY ON A FARM!!!!! Go figure?????????????? I was told that all I need is big time steroids, and OX until the 22nd of the month and that should cure my PulFib. Yeah!!!!!! They added the OX after fianlly deciding that the two OX saturation machines might not be broken, my level might actually be 60%!! I've been have the symptoms of low OX for months. It's only by the grace of God that I havent stroked out!!! LOL!!! I think I'm waaaaaaaaaaaay over due for a visit to a private specialist. I've got to get out of this HMO before they kill me.

[Guest guest]

Boy your family has really had the lung problems, TO MUCH sickness. I am praying for your family. I do know prayer changes things. Thank you for the info. God Bless Peggy 9/04 ipf

on 5/11/06 12:37 PM, debra beck at mydeb53@... wrote:

Peggy;

Ipf generally has no known cause, idiopapathic means unknown source. they believe there are certain things that can cause it,metal dust coal dust wood dust and a few other things but they as yet have been unable to put their finger on an exact cause. Pulmonary fibrosis can usually be identified to a source cause and be treated. I hope this helps. If not ask away. I'll answer what I can. I'm no doctor , I've just done a lot of research on interstitial lung diseases. I have two, perhaps three, brothers with sarcoidosis and I have ipf. All of these are ild's. Were trying to learn and do as much as we can to make sure future generations don't get these diseases. God bless.

Gordon ipf 12/03

Re: Got me goin' in circles!!! Asbestosis,sarcoidosis, idiopathic, RA lung...

WOW you have been through the proverbial mill and a half. Where were you? It sounds like a third world country ran by an HMO. Get yourself an oximeter and keep up with your saturation yourself. As far as the DX its PF regardless of the name they put on it, right?

I have read somewhere they call it farmers lung because farmers get PF from the mold and mildew in the hay.

So they may be thinking you've been exposed to mold for an extended time.. WHERE was your Dr. during all this? I'm thinking your way over due for a specialist..

I also don't believe you can become dependant on OX. you need it or not.

Keep in mind I am not a Dr. But it sounds like you need one.. God Bless You, Prayerfully Peggy

on 5/10/06 4:35 PM, Armede at armede@... wrote:

Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again anytime soon. I'm counting my blessings though. I'm doing pretty well considering. It was incredably painful and confusing. I was discharged without being given any instuctions on wound care, or date of staple extraction. They have me on OX, 24/7 for a month.(24/7 according to on respritory therapist - another said not to use 24/7 of I'll become dependant on it) As to the level of OX, I was told to look at the meter on my hospital room wall (that day it said 1.5 - some days it was set at 2.5) and that was the number I should set my flow to.

AKKKK!! I can't believe I made it out alive. I know I wouldnt have with out the love, thoughts and prayers I have been receiving.

Soooo, just got a call from my Pul Spec. They must have added a new reasons for my Pul.Fibro. to the dart board they use because now they say I have " Farmers Lung " . LOL!!!!!!!

We've gone from asbestosis to silicosis (I was a quartz worker for 10 years) to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular disease to Farmers lung. Now mind you - I have never spent a DAY ON A FARM!!!!!

Go figure??????????????

I was told that all I need is big time steroids, and OX until the 22nd of the month and that should cure my PulFib. Yeah!!!!!!

They added the OX after fianlly deciding that the two OX saturation machines might not be broken, my level might actually be 60%!! I've been have the symptoms of low OX for months. It's only by the grace of God that I havent stroked out!!! LOL!!!

I think I'm waaaaaaaaaaaay over due for a visit to a private specialist. I've got to get out of this HMO before they kill me.

[Guest guest]

Hi Peggy, thank you for the valuble info on Farmers Lung and hypersensitivity pneumonitis.

" WOW you have been through the proverbial mill and a half. Where were you?

I'm in the San Francisco Bay Area. Kaiser. I agree, I will get myself an oximeter.

I also believe its time for an out side second opinion. They have spent the last three years fighting over what caused my PF instead of treating it.

Again, thank you for the info. Take care.,

LynnA

It> sounds like a third world country ran by an HMO. Get yourself an oximeter> and keep up with your saturation yourself. As far as the DX its PF> regardless of the name they put on it, right?> I have read somewhere they call it farmers lung because farmers get PF from> the mold and mildew in the hay.> So they may be thinking you've been exposed to mold for an extended time..> WHERE was your Dr. during all this? I'm thinking your way over due for a> specialist..> I also don't believe you can become dependant on OX. you need it or not.> Keep in mind I am not a Dr. But it sounds like you need one.. God Bless You,> Prayerfully Peggy

> > > Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again> anytime soon. I'm counting my blessings though. I'm doing pretty well> considering. It was incredably painful and confusing. I was discharged> without being given any instuctions on wound care, or date of staple> extraction. They have me on OX, 24/7 for a month.(24/7 according to on> respritory therapist - another said not to use 24/7 of I'll become dependant> on it) As to the level of OX, I was told to look at the meter on my hospital> room wall (that day it said 1.5 - some days it was set at 2.5) and that was> the number I should set my flow to.> > AKKKK!! I can't believe I made it out alive. I know I wouldnt have with> out the love, thoughts and prayers I have been receiving.> > Soooo, just got a call from my Pul Spec. They must have added a new reasons> for my Pul.Fibro. to the dart board they use because now they say I have> "Farmers Lung". LOL!!!!!!!> > We've gone from asbestosis to silicosis (I was a quartz worker for 10 years)> to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular> disease to Farmers lung. Now mind you - I have never spent a DAY ON A> FARM!!!!! > > Go figure??????????????> > I was told that all I need is big time steroids, and OX until the 22nd of> the month and that should cure my PulFib. Yeah!!!!!!> > They added the OX after fianlly deciding that the two OX saturation machines> might not be broken, my level might actually be 60%!! I've been have the> symptoms of low OX for months. It's only by the grace of God that I havent> stroked out!!! LOL!!!> > I think I'm waaaaaaaaaaaay over due for a visit to a private specialist.> I've got to get out of this HMO before they kill me.> >

[Guest guest]

Doris,

PF has a known cause. I have PF secondary to Lupus. By treating Lupus, an autoimmune disease which can attack any organ or body system, they stalled the progression of the fibrosis. I am 9 years from biopsy and dx. But, I am now in end stage. I read somewhere that there have been people who lived 20 years after being diagnosed with PF. My doctors have been aggressive in treating me. I was stable for a long time. Still on 02 but stable. Started gradually deteriorating a couple of years ago.

Whatever your diagnosis....I think doctors need to look for ways to treat and stall the disease. I am hearing that so many docs just shake thier head and send patients home. That is unforgivable. It is no wonder that patients are depressed and despondant.

Take care and feel better!

Joyce

> > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again> > anytime soon. I'm counting my blessings though. I'm doing pretty well> > considering. It was incredably painful and confusing. I was discharged> > without being given any instuctions on wound care, or date of staple> > extraction. They have me on OX, 24/7 for a month.(24/7 according to on> > respritory therapist - another said not to use 24/7 of I'll become dependant> > on it) As to the level of OX, I was told to look at the meter on my hospital> > room wall (that day it said 1.5 - some days it was set at 2.5) and that was> > the number I should set my flow to.> > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt have with> > out the love, thoughts and prayers I have been receiving.> > > > Soooo, just got a call from my Pul Spec. They must have added a new reasons> > for my Pul.Fibro. to the dart board they use because now they say I have> > "Farmers Lung". LOL!!!!!!!> > > > We've gone from asbestosis to silicosis (I was a quartz worker for 10 years)> > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular> > disease to Farmers lung. Now mind you - I have never spent a DAY ON A> > FARM!!!!! > > > > Go figure??????????????> > > > I was told that all I need is big time steroids, and OX until the 22nd of> > the month and that should cure my PulFib. Yeah!!!!!!> > > > They added the OX after fianlly deciding that the two OX saturation machines> > might not be broken, my level might actually be 60%!! I've been have the> > symptoms of low OX for months. It's only by the grace of God that I havent> > stroked out!!! LOL!!!> > > > I think I'm waaaaaaaaaaaay over due for a visit to a private specialist.> > I've got to get out of this HMO before they kill me.> > > >

[Guest guest]

Hi Joyce, I have nsip nonspecific interstitial fibosis, ...its funny they use that term. I dont have lupus,but at this point my desease is an autoimunn desease , I know that working in the enviorment inwhich I was working caused these becuase of my health history and my living style also I come from a fortunate family history father is 85, mother 74 good and active lives.my docters wanted to treat me with steriods in whioch I did for about two weeks agaisnt my gut feelinf than weened off .in my case there no one was willing to do a case history on me and they were not listening to me when I would repeatively tell them what I worked around so I started researching and asked them if there was anthing that they proscribed that would go directly to the inflamed cell......they said no and I also said I know you are making money oof the drugs and my desease yet your not willing to say it was caused by enviorment. he said we are not making any money off the drugs but yes we are

making money off of your desease. thankyou for being honest! now they check me every six to eight weeks I continue to reseach and I will be going to a rhomatoligist just incase ther is other testing inwhich my lung specialist did not do .dorisjanne5303 wrote: Doris, PF has a known cause. I have PF secondary to Lupus. By treating Lupus, an autoimmune disease which can attack any organ or body system, they stalled the progression of the fibrosis. I am 9 years from biopsy and dx. But, I am now in end stage. I read somewhere that there have been people who lived 20 years after being diagnosed with PF. My doctors have been aggressive in treating me. I was stable

for a long time. Still on 02 but stable. Started gradually deteriorating a couple of years ago. Whatever your diagnosis....I think doctors need to look for ways to treat and stall the disease. I am hearing that so many docs just shake thier head and send patients home. That is unforgivable. It is no wonder that patients are depressed and despondant. Take care and feel better! Joyce > > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again> > anytime soon. I'm counting my blessings though. I'm doing pretty well> > considering. It was incredably painful and confusing. I was discharged> > without being given any instuctions on wound care, or date of staple> > extraction. They have me on OX, 24/7 for a month.(24/7 according to on> > respritory therapist - another said not to use 24/7 of I'll become dependant> > on it) As to the

level of OX, I was told to look at the meter on my hospital> > room wall (that day it said 1.5 - some days it was set at 2.5) and that was> > the number I should set my flow to.> > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt have with> > out the love, thoughts and prayers I have been receiving.> > > > Soooo, just got a call from my Pul Spec. They must have added a new reasons> > for my Pul.Fibro. to the dart board they use because now they say I have> > "Farmers Lung". LOL!!!!!!!> > > > We've gone from asbestosis to silicosis (I was a quartz worker for 10 years)> > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular> > disease to Farmers lung. Now mind you - I have never spent a DAY ON A> > FARM!!!!! > > > > Go figure??????????????> > > > I was told that

all I need is big time steroids, and OX until the 22nd of> > the month and that should cure my PulFib. Yeah!!!!!!> > > > They added the OX after fianlly deciding that the two OX saturation machines> > might not be broken, my level might actually be 60%!! I've been have the> > symptoms of low OX for months. It's only by the grace of God that I havent> > stroked out!!! LOL!!!> > > > I think I'm waaaaaaaaaaaay over due for a visit to a private specialist.> > I've got to get out of this HMO before they kill me.> > > >

[Guest guest]

Hi Doris, I didnt mean to be missleading. While there is not " cure "

for PF, it can sometimes be 'held at bay' or stableized with

prednisone, or a cocktail of prednisone, cytoxan and/or Imuran.

(s.p.) I was recently told about a site (I think off this message

board) called Huff n Puff forums. Google " huffnpuff " , its a

support forum for people suffering from Interstitial Lung disease

(PF). I read a posting from there from some one who has been

dealing with a DX of PF for 9 years!!!! Yeah Baby!!! Beaten those

odds. Best news I've heard for a while!!!!

Take care.

LynnA

> >

> >

> > Hello all. Its day ten after open lung biopsy. I'd rather not do

THAT again

> > anytime soon. I'm counting my blessings though. I'm doing pretty

well

> > considering. It was incredably painful and confusing. I was

discharged

> > without being given any instuctions on wound care, or date of

staple

> > extraction. They have me on OX, 24/7 for a month.(24/7 according

to on

> > respritory therapist - another said not to use 24/7 of I'll

become dependant

> > on it) As to the level of OX, I was told to look at the meter on

my hospital

> > room wall (that day it said 1.5 - some days it was set at 2.5)

and that was

> > the number I should set my flow to.

> >

> > AKKKK!! I can't believe I made it out alive. I know I wouldnt

have with

> > out the love, thoughts and prayers I have been receiving.

> >

> > Soooo, just got a call from my Pul Spec. They must have added a

new reasons

> > for my Pul.Fibro. to the dart board they use because now they

say I have

> > " Farmers Lung " . LOL!!!!!!!

> >

> > We've gone from asbestosis to silicosis (I was a quartz worker

for 10 years)

> > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan

vascular

> > disease to Farmers lung. Now mind you - I have never spent a DAY

ON A

> > FARM!!!!!

> >

> > Go figure??????????????

> >

> > I was told that all I need is big time steroids, and OX until

the 22nd of

> > the month and that should cure my PulFib. Yeah!!!!!!

> >

> > They added the OX after fianlly deciding that the two OX

saturation machines

> > might not be broken, my level might actually be 60%!! I've been

have the

> > symptoms of low OX for months. It's only by the grace of God

that I havent

> > stroked out!!! LOL!!!

> >

> > I think I'm waaaaaaaaaaaay over due for a visit to a private

specialist.

> > I've got to get out of this HMO before they kill me.

> >

> >

[Guest guest]

Joyce, you are amazing. Thank you soooo much for letting us know

that we can laugh at the 6 year timeline. That blessings are

possible. My heart goes out to you at this stage. And my respect,

that you are still posting and sharing your positive and loveing

energy.

LynnA

> > >

> > >

> > > Hello all. Its day ten after open lung biopsy. I'd rather not

do

> THAT again

> > > anytime soon. I'm counting my blessings though. I'm doing

pretty

> well

> > > considering. It was incredably painful and confusing. I was

> discharged

> > > without being given any instuctions on wound care, or date of

staple

> > > extraction. They have me on OX, 24/7 for a month.(24/7

according to

> on

> > > respritory therapist - another said not to use 24/7 of I'll

become

> dependant

> > > on it) As to the level of OX, I was told to look at the meter

on my

> hospital

> > > room wall (that day it said 1.5 - some days it was set at 2.5)

and

> that was

> > > the number I should set my flow to.

> > >

> > > AKKKK!! I can't believe I made it out alive. I know I wouldnt

have

> with

> > > out the love, thoughts and prayers I have been receiving.

> > >

> > > Soooo, just got a call from my Pul Spec. They must have added

a new

> reasons

> > > for my Pul.Fibro. to the dart board they use because now they

say I

> have

> > > " Farmers Lung " . LOL!!!!!!!

> > >

> > > We've gone from asbestosis to silicosis (I was a quartz worker

for

> 10 years)

> > > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan

> vascular

> > > disease to Farmers lung. Now mind you - I have never spent a

DAY ON

> A

> > > FARM!!!!!

> > >

> > > Go figure??????????????

> > >

> > > I was told that all I need is big time steroids, and OX until

the

> 22nd of

> > > the month and that should cure my PulFib. Yeah!!!!!!

> > >

> > > They added the OX after fianlly deciding that the two OX

saturation

> machines

> > > might not be broken, my level might actually be 60%!! I've

been have

> the

> > > symptoms of low OX for months. It's only by the grace of God

that I

> havent

> > > stroked out!!! LOL!!!

> > >

> > > I think I'm waaaaaaaaaaaay over due for a visit to a private

> specialist.

> > > I've got to get out of this HMO before they kill me.

> > >

> > >

[Guest guest]

Doris,

You are so smart for managing your own illness. Searching for answers and demanding good medical treatment is your best defense against this horrid disease.

You can file a complaint or request for inspection from OHSA. Even as a former employee. "Employee" means a current employee, a former employee, or an employee being assigned or transferred to work where there will be exposure to toxic substances or harmful physical agents. In the case of a deceased or legally incapacitated employee, the employee's legal representative may directly exercise all the employee's rights under this section.

http://www.lectlaw.com/files/emp38.htm and http://www.osha.gov/pls/oshaweb/owadisp.show_document?p_table=STANDARDS & p_id=10027

These are a few of the many links to OSHA. I was in management in my former life as a well person and believe me, companies do not want to deal with OHSA. Companies are required to keep records of complaints, inspections, etc. There may be something from that period of your employment on record that will help you determine the cause of your illness and help you to claim compensation from the company.

Just a thought. You have probably already researched all the avenues that I mentioned. I am glad that you are seeing a rheumatologist. Some of them are only interested in looking at people as arthritis patients, but some are curious and concerned with systemic autoimmune disorders. They don't make nearly as much money when they take time to think and research. My rheumatologist was so helpful in the beginning and now he has $$$ signs in his eyes. Got to start looking for another.

May God be with you and give you the strength to fight for your life!

Hugs,

Joyce > > > > > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again> > > anytime soon. I'm counting my blessings though. I'm doing pretty well> > > considering. It was incredably painful and confusing. I was discharged> > > without being given any instuctions on wound care, or date of staple> > > extraction. They have me on OX, 24/7 for a month.(24/7 according to on> > > respritory therapist - another said not to use 24/7 of I'll become dependant> > > on it) As to the level of OX, I was told to look at the meter on my hospital> > > room wall (that day it said 1.5 - some days it was set at 2.5) and that was> > > the number I should set my flow to.> > > > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt have with> > > out the love, thoughts and prayers I have been receiving.> > > > > > Soooo, just got a call from my Pul Spec. They must have added a new reasons> > > for my Pul.Fibro. to the dart board they use because now they say I have> > > "Farmers Lung". LOL!!!!!!!> > > > > > We've gone from asbestosis to silicosis (I was a quartz worker for 10 years)> > > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular> > > disease to Farmers lung. Now mind you - I have never spent a DAY ON A> > > FARM!!!!! > > > > > > Go figure??????????????> > > > > > I was told that all I need is big time steroids, and OX until the 22nd of> > > the month and that should cure my PulFib. Yeah!!!!!!> > > > > > They added the OX after fianlly deciding that the two OX saturation machines> > > might not be broken, my level might actually be 60%!! I've been have the> > > symptoms of low OX for months. It's only by the grace of God that I havent> > > stroked out!!! LOL!!!> > > > > > I think I'm waaaaaaaaaaaay over due for a visit to a private specialist.> > > I've got to get out of this HMO before they kill me.> > > > > >

[Guest guest]

Lynn,

I am 9 years out. 1997 Biopsy. I am in end stage, but still having a good time. I read yesturday, didn't copy it .....this guy was saying IPF 20 years. I know the statistics, but consider some die early and some later. I am shooting for later! How about you??

Hugs,

Joyce > > > > > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do > THAT again> > > anytime soon. I'm counting my blessings though. I'm doing pretty > well> > > considering. It was incredably painful and confusing. I was > discharged> > > without being given any instuctions on wound care, or date of > staple> > > extraction. They have me on OX, 24/7 for a month.(24/7 according > to on> > > respritory therapist - another said not to use 24/7 of I'll > become dependant> > > on it) As to the level of OX, I was told to look at the meter on > my hospital> > > room wall (that day it said 1.5 - some days it was set at 2.5) > and that was> > > the number I should set my flow to.> > > > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt > have with> > > out the love, thoughts and prayers I have been receiving.> > > > > > Soooo, just got a call from my Pul Spec. They must have added a > new reasons> > > for my Pul.Fibro. to the dart board they use because now they > say I have> > > "Farmers Lung". LOL!!!!!!!> > > > > > We've gone from asbestosis to silicosis (I was a quartz worker > for 10 years)> > > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan > vascular> > > disease to Farmers lung. Now mind you - I have never spent a DAY > ON A> > > FARM!!!!! > > > > > > Go figure??????????????> > > > > > I was told that all I need is big time steroids, and OX until > the 22nd of> > > the month and that should cure my PulFib. Yeah!!!!!!> > > > > > They added the OX after fianlly deciding that the two OX > saturation machines> > > might not be broken, my level might actually be 60%!! I've been > have the> > > symptoms of low OX for months. It's only by the grace of God > that I havent> > > stroked out!!! LOL!!!> > > > > > I think I'm waaaaaaaaaaaay over due for a visit to a private > specialist.> > > I've got to get out of this HMO before they kill me.> > > > > >

[Guest guest]

hey thanks lynn, Im going to check it out right now! oh yeah I forgot to tell you guys about a t-shirt I picked up in the mountains it says...screw milk......got oxegen!!!!.....denise I am sorry about your relasp I m wishing on a star.............for smoother recovery and since Im at it a cure, cant hurt dorisArmede wrote: Hi Doris, I didnt mean to be missleading. While there is not "cure" for PF, it can sometimes be 'held at bay' or stableized with prednisone, or a cocktail of prednisone, cytoxan and/or Imuran. (s.p.) I was recently told about a site (I think off this message board) called Huff n Puff forums. Google "huffnpuff" , its a support forum for people suffering from Interstitial Lung disease (PF). I read a posting from there from some one who has been

dealing with a DX of PF for 9 years!!!! Yeah Baby!!! Beaten those odds. Best news I've heard for a while!!!!Take care.LynnA> > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again> > anytime soon. I'm counting my blessings though. I'm doing pretty well> > considering. It was incredably painful and confusing. I was discharged> > without being given any instuctions on wound care, or date of staple> > extraction. They have me on OX, 24/7 for a month.(24/7 according to on> > respritory therapist - another said not to use 24/7 of I'll become dependant> > on it) As to the level of OX, I was told to look at the meter on my hospital> > room wall (that day it said 1.5 -

some days it was set at 2.5) and that was> > the number I should set my flow to.> > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt have with> > out the love, thoughts and prayers I have been receiving.> > > > Soooo, just got a call from my Pul Spec. They must have added a new reasons> > for my Pul.Fibro. to the dart board they use because now they say I have> > "Farmers Lung". LOL!!!!!!!> > > > We've gone from asbestosis to silicosis (I was a quartz worker for 10 years)> > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular> > disease to Farmers lung. Now mind you - I have never spent a DAY ON A> > FARM!!!!! > > > > Go figure??????????????> > > > I was told that all I need is big time steroids, and OX until the 22nd of> > the

month and that should cure my PulFib. Yeah!!!!!!> > > > They added the OX after fianlly deciding that the two OX saturation machines> > might not be broken, my level might actually be 60%!! I've been have the> > symptoms of low OX for months. It's only by the grace of God that I havent> > stroked out!!! LOL!!!> > > > I think I'm waaaaaaaaaaaay over due for a visit to a private specialist.> > I've got to get out of this HMO before they kill me.> > > >

[Guest guest]

hi joyce, it took 3and a half years to get some one to listen to me which was Uof M, last june and they still wont completly say it was enviormental though my doc wrote on my dissability papers that my desease likly exsasberated from chemicals dust, and on nthe question was this work related he made his own circle and wrote unclear sooooo the fight is still on I am just beginning the whole going for workmens comp and than I have to look for a docter that will agree to 51 percent.going to the rheamatoligist after reading about 9-11 gives me a little more hope .in the long run I dont exspect to win$$$$ but exspose the fact that MSU is screwing up with the lives of the labores who ntake care of the children that pay everyones salory in a sence thankyou for all the information I guess for me there is a reason for my situation, Iam a fighter for injustice that lies under the radar see ya dorisjanne5303 wrote: Doris, You are so smart for managing your own illness. Searching for answers and demanding good medical treatment is your best defense against this horrid disease. You can file a complaint or request for inspection from OHSA. Even as a former employee. "Employee" means a current employee, a former employee, or an employee being assigned or transferred to work where there will be exposure to toxic substances or harmful physical agents. In the case of a deceased or legally incapacitated employee, the employee's legal representative may directly exercise all the employee's rights under this section. http://www.lectlaw.com/files/emp38.htm and http://www.osha.gov/pls/oshaweb/owadisp.show_document?p_table=STANDARDS & p_id=10027 These are a few of the many links to OSHA. I was in management in my former life as a well person and believe me, companies do not want to deal with OHSA. Companies are required to keep records of complaints, inspections, etc. There may be something from that period of your employment on record that will help you determine the cause of your illness and help you to claim compensation from the company. Just a thought. You have probably already researched all the avenues that I mentioned. I am glad that you are seeing a rheumatologist. Some of

them are only interested in looking at people as arthritis patients, but some are curious and concerned with systemic autoimmune disorders. They don't make nearly as much money when they take time to think and research. My rheumatologist was so helpful in the beginning and now he has $$$ signs in his eyes. Got to start looking for another. May God be with you and give you the strength to fight for your life! Hugs, Joyce > > > > > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do THAT again> > > anytime soon. I'm counting my blessings though. I'm doing pretty well> > > considering. It was incredably painful and confusing. I was discharged> > > without being given any instuctions on wound care, or date of staple> > > extraction. They have me on OX, 24/7 for a month.(24/7 according to on> > > respritory therapist - another said not to use 24/7 of I'll become dependant> > > on it) As to the level of OX, I was told to look at the meter on my hospital> > > room wall (that day it said 1.5 - some days it was set at 2.5) and that was> > > the number I should set my flow to.> > > > > > AKKKK!! I can't believe I made it out

alive. I know I wouldnt have with> > > out the love, thoughts and prayers I have been receiving.> > > > > > Soooo, just got a call from my Pul Spec. They must have added a new reasons> > > for my Pul.Fibro. to the dart board they use because now they say I have> > > "Farmers Lung". LOL!!!!!!!> > > > > > We've gone from asbestosis to silicosis (I was a quartz worker for 10 years)> > > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan vascular> > > disease to Farmers lung. Now mind you - I have never spent a DAY ON A> > > FARM!!!!! > > > > > > Go figure??????????????> > > > > > I was told that all I need is big time steroids, and OX until the 22nd of> > > the month and that should cure my PulFib. Yeah!!!!!!> > > > > > They added the OX after

fianlly deciding that the two OX saturation machines> > > might not be broken, my level might actually be 60%!! I've been have the> > > symptoms of low OX for months. It's only by the grace of God that I havent> > > stroked out!!! LOL!!!> > > > > > I think I'm waaaaaaaaaaaay over due for a visit to a private specialist.> > > I've got to get out of this HMO before they kill me.> > > > > >

[Guest guest]

I'm right there with you Joyce! Later is Greater!!!!! I still have

things to do, places to go and people to meet!!!!!! I love your

attitude, thank you for passing it on. I've got to keep these thoughts

through it all and keep on truck in.

> > > >

> > > >

> > > > Hello all. Its day ten after open lung biopsy. I'd rather not do

> > THAT again

> > > > anytime soon. I'm counting my blessings though. I'm doing pretty

> > well

> > > > considering. It was incredably painful and confusing. I was

> > discharged

> > > > without being given any instuctions on wound care, or date of

> > staple

> > > > extraction. They have me on OX, 24/7 for a month.(24/7 according

> > to on

> > > > respritory therapist - another said not to use 24/7 of I'll

> > become dependant

> > > > on it) As to the level of OX, I was told to look at the meter on

> > my hospital

> > > > room wall (that day it said 1.5 - some days it was set at 2.5)

> > and that was

> > > > the number I should set my flow to.

> > > >

> > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt

> > have with

> > > > out the love, thoughts and prayers I have been receiving.

> > > >

> > > > Soooo, just got a call from my Pul Spec. They must have added a

> > new reasons

> > > > for my Pul.Fibro. to the dart board they use because now they

> > say I have

> > > > " Farmers Lung " . LOL!!!!!!!

> > > >

> > > > We've gone from asbestosis to silicosis (I was a quartz worker

> > for 10 years)

> > > > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan

> > vascular

> > > > disease to Farmers lung. Now mind you - I have never spent a DAY

> > ON A

> > > > FARM!!!!!

> > > >

> > > > Go figure??????????????

> > > >

> > > > I was told that all I need is big time steroids, and OX until

> > the 22nd of

> > > > the month and that should cure my PulFib. Yeah!!!!!!

> > > >

> > > > They added the OX after fianlly deciding that the two OX

> > saturation machines

> > > > might not be broken, my level might actually be 60%!! I've been

> > have the

> > > > symptoms of low OX for months. It's only by the grace of God

> > that I havent

> > > > stroked out!!! LOL!!!

> > > >

> > > > I think I'm waaaaaaaaaaaay over due for a visit to a private

> > specialist.

> > > > I've got to get out of this HMO before they kill me.

> > > >

> > > >

[Guest guest]

ROFLMAO!!!!!!!!!! Great T-shirt!!!!!!!!! MAny thanks, I needed that laugh.

Lynn> > > > > > > > > Hello all. Its day ten after open lung biopsy. I'd rather not do > THAT again> > > anytime soon. I'm counting my blessings though. I'm doing pretty > well> > > considering. It was incredably painful and confusing. I was > discharged> > > without being given any instuctions on wound care, or date of > staple> > > extraction. They have me on OX, 24/7 for a month.(24/7 according > to on> > > respritory therapist - another said not to use 24/7 of I'll > become dependant> > > on it) As to the level of OX, I was told to look at the meter on > my hospital> > > room wall (that day it said 1.5 - some days it was set at 2.5) > and that was> > > the number I should set my flow to.> > > > > > AKKKK!! I can't believe I made it out alive. I know I wouldnt > have with> > > out the love, thoughts and prayers I have been receiving.> > > > > > Soooo, just got a call from my Pul Spec. They must have added a > new reasons> > > for my Pul.Fibro. to the dart board they use because now they > say I have> > > "Farmers Lung". LOL!!!!!!!> > > > > > We've gone from asbestosis to silicosis (I was a quartz worker > for 10 years)> > > to Rheyumitoid lung, to Sarcoidosis, to Idiopathic PF, collegan > vascular> > > disease to Farmers lung. Now mind you - I have never spent a DAY > ON A> > > FARM!!!!! > > > > > > Go figure??????????????> > > > > > I was told that all I need is big time steroids, and OX until > the 22nd of> > > the month and that should cure my PulFib. Yeah!!!!!!> > > > > > They added the OX after fianlly deciding that the two OX > saturation machines> > > might not be broken, my level might actually be 60%!! I've been > have the> > > symptoms of low OX for months. It's only by the grace of God > that I havent> > > stroked out!!! LOL!!!> > > > > > I think I'm waaaaaaaaaaaay over due for a visit to a private > specialist.> > > I've got to get out of this HMO before they kill me.> > > > > >