Re: Hypersensitivity Pneumonitis

[Guest guest]

Beth

I know has posted many times to remind people to get

tested for it. Hypersensitivity Pneumonitis is not an easy diagnosis.

However, through combinations of HRCT, Biopsy (generally the biopsy will

help correlate), and blood tests, it can be detected and if the agent

causing the pneumonitis is removed then the outlook can be promising. I

know they jumped on Joyce Rudy's quickly at National Jewish. This is

also why the Centers of Excellence spend so much time on your history

(not just medical, life history). I remember the doctor interviewing me

at great length. I looked at my recent labs too and I was tested again

for a long list of different sensitivities.

Thank the other Bruce for all of us. Everytime we start to think of this

as one disease, we're reminded how, although we're all in the same

family, there are some very significant differences. Hopefully he is

able to control his environment well enough to enjoy most days and

prevent additional damage. I hate to ask him for more but I do feel it

would be of great help to others if he could share how and where the

hypersensitivity pneumonitis diagnosis was actually made.

>

> Hi all,

> I received this email from a board member. I thought his story was

valuable and contained lessons worth learning for all of us. There are

times when a cause for pulmonary fibrosis can't be identified easily and

then there are times when the cause can be identified but it required

persistance. Joyce Rudy is a good example of this.

> This gentleman, Bruce is his name (same name, different member) tells

a similar story. With his permission I'm sharing it with all of you.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

> From: " bruce351@... " bruce351@...

> To: mbmurtha@...

> Sent: Saturday, September 19, 2009 1:17:13 AM

> Subject: IPF HOT TUBS AND HP

>

>

> I read your post about HOT TUB PROBLEMS and I would like to share

something with you. I have 2 lung diseases, I first became sick with a

lung disease called HYPERSENSITIVITY PNEUMONITIS (HP)from the oils where

I worked as a Punch Press setup operator. The oil had been contaminated

with a Parasitic Mold which I would breath in every day as I would spray

the sheet metal with the oils from a plastic spray bottle and also from

the spray from the 550 ton press coming together and forming the parts.

After becoming sick with HP my lungs became scarred and continue to scar

(PULMONARY FIBROSIS) from the inflammation and side affects of being

exposed to the oils. I have a feeling that if some of the people with

IPF or unknown cause to their PF would look back at their live that

maybe they may or may not figure out what caused their illness.. HP has

changed my life because I can not be exposed to

fumes,perfume,smoke,cologne,strong odors like in the shopping

> isles like laundry soap, bleach,car and truck exhaust.hot and cold

extremes in the weather or I am sick for hours and even days and every

exposure only causes more lung scarring. HP can come from INDOOR POOLS

,HOT TUBS, MOLDY HAY, BIRDS AND JUST MOLD IN THE ROOF OR STRUCTURE OF

YOUR HOME OR WORK PLACE. HP is know as pigeon breeds disease,mushroom

works lung, farmers lung as well as work related lung problems from

METAL WORKING FLUIDS. I have been fighting this disease since 2003 and

also work comp since May 2005 but we have won our case in court as well

as the appeal that my work place filed but we are still waiting for

another court date to get help with oxygen supplies,meds and my loss of

earnings for what is left of my life, I hope that you take the time to

find out what exactly is wrong or may have caused your illness because

knowing will help you to avoid the problems and maybe save some of your

lungs. I read these posts all of the time I am

> kind of a back seat driver that watches what goes by but never chime

in but I thought that If I can save or help just one person from the

life that I have to live like the boy in the glass bubble that maybe

that was GODS plans for me to get this disease to begin with because I

can not figure out why I would get a disease that has taken almost

everything that I enjoyed in life away from me. I am car CRAZY but car

exhaust and fumes kill me , I use to ride my TREK BIKE 100 TO 150 MILES

ON Saturdays or just on my day off but now just going up the stairs to

go to bed kills me. I use to love to go to car shows and drag races but

the tire smoke kills me. I hope that you can help out by checking into

HYPERSENSITIVITY PNEUMONITIS and help spread the word the maybe we can

find out what caused some of these unknown causes of IPF.

> THANKS FOR YOUR TIME AND GOD BLESS

>

[Guest guest]

Bruce,

Hopefully he will respond to your post. He is a member and reads, he just hasn't posted to the board as yet. Maybe this will encourage him to do just that!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, September 20, 2009 2:00:49 PMSubject: Re: Hypersensitivity Pneumonitis

BethI know has posted many times to remind people to gettested for it. Hypersensitivity Pneumonitis is not an easy diagnosis.However, through combinations of HRCT, Biopsy (generally the biopsy willhelp correlate), and blood tests, it can be detected and if the agentcausing the pneumonitis is removed then the outlook can be promising. Iknow they jumped on Joyce Rudy's quickly at National Jewish. This isalso why the Centers of Excellence spend so much time on your history(not just medical, life history). I remember the doctor interviewing meat great length. I looked at my recent labs too and I was tested againfor a long list of different sensitivities.Thank the other Bruce for all of us. Everytime we start to think of thisas one disease, we're reminded how, although we're all in the samefamily, there are some very significant differences. Hopefully he isable to control

his environment well enough to enjoy most days andprevent additional damage. I hate to ask him for more but I do feel itwould be of great help to others if he could share how and where thehypersensitivity pneumonitis diagnosis was actually made.>> Hi all,> I received this email from a board member. I thought his story wasvaluable and contained lessons worth learning for all of us. There aretimes when a cause for pulmonary fibrosis can't be identified easily andthen there are times when the cause can be identified but it requiredpersistance. Joyce Rudy is a good example of this.> This gentleman, Bruce is his name (same name, different member) tellsa similar story. With his

permission I'm sharing it with all of you.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>> To: mbmurtha@...> Sent: Saturday, September 19, 2009 1:17:13 AM> Subject: IPF HOT TUBS AND HP>>> I read your post about HOT TUB PROBLEMS and I would like to sharesomething with you. I have 2 lung diseases, I first became sick with alung disease called HYPERSENSITIVITY PNEUMONITIS (HP)from the oils whereI worked as a Punch Press setup operator. The oil had been contaminatedwith a Parasitic Mold which I would breath in every day as I would spraythe sheet metal with the oils from a plastic spray bottle and also fromthe spray from the 550 ton press coming together and forming the parts.After becoming sick with HP my lungs became scarred and continue to scar(PULMONARY FIBROSIS) from the

inflammation and side affects of beingexposed to the oils. I have a feeling that if some of the people withIPF or unknown cause to their PF would look back at their live thatmaybe they may or may not figure out what caused their illness.. HP haschanged my life because I can not be exposed tofumes,perfume, smoke,cologne, strong odors like in the shopping> isles like laundry soap, bleach,car and truck exhaust.hot and coldextremes in the weather or I am sick for hours and even days and everyexposure only causes more lung scarring. HP can come from INDOOR POOLS,HOT TUBS, MOLDY HAY, BIRDS AND JUST MOLD IN THE ROOF OR STRUCTURE OFYOUR HOME OR WORK PLACE. HP is know as pigeon breeds disease,mushroomworks lung, farmers lung as well as work related lung problems fromMETAL WORKING FLUIDS. I have been fighting this disease since 2003 andalso work comp since May 2005 but we have won our case in court as

wellas the appeal that my work place filed but we are still waiting foranother court date to get help with oxygen supplies,meds and my loss ofearnings for what is left of my life, I hope that you take the time tofind out what exactly is wrong or may have caused your illness becauseknowing will help you to avoid the problems and maybe save some of yourlungs. I read these posts all of the time I am> kind of a back seat driver that watches what goes by but never chimein but I thought that If I can save or help just one person from thelife that I have to live like the boy in the glass bubble that maybethat was GODS plans for me to get this disease to begin with because Ican not figure out why I would get a disease that has taken almosteverything that I enjoyed in life away from me. I am car CRAZY but carexhaust and fumes kill me , I use to ride my TREK BIKE 100 TO 150 MILESON Saturdays or just on my

day off but now just going up the stairs togo to bed kills me. I use to love to go to car shows and drag races butthe tire smoke kills me. I hope that you can help out by checking intoHYPERSENSITIVITY PNEUMONITIS and help spread the word the maybe we canfind out what caused some of these unknown causes of IPF.> THANKS FOR YOUR TIME AND GOD BLESS>

[Guest guest]

This is the best I've seen on HP since joining the group. My Dx in 2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy and saw "granulation" that he thought might point to HP, therefore giving me a much better prognosis. He sent the slides to Mayo and they agreed. Five months later following a winter in Arizona, and a long round of prednisone which worked miracles, I was told that if I wanted to stabilize, we would need to relocate to Arizona. We chose instead Utah. Mistake. My pulmo had said that most HP is due to mold and that it should be a dry climate. All the Mojave desert is dry except where people insist on watering big green lawns, golf courses, cemetaries... etc.... Here in St. they are very

dedicated to their watered lawns and such... leaving excessive amounts of mold spewing spores and blowing in the breeze. Some yards virtually reek of mold. Too late. We are home owners and not likely to be leaving at this point in the housing market. North Las Vegas would have been a better choice due to their emphasis on desert landscape and the fact that it has never had a lot of irrigation even now. As for my two pulmos here (both gone now), one was very technical but didn't offer anything in the way of teaching or suggestions for prevention. The last one literally gave the impression that I was not there but for my chart on the computer. He said once, with his back to me, "You have IPF." After being told it was secondary to HP by my previous pulmo, he had nothing to add to that statement. He left for a Fellowship and left me high and dry with a handful of prescriptions to last a

year. His partner is not taking new patients. So, I am off to National Jewish next month to see what they think. After reading all the good things about them I am very hopeful that I can be stabilized. At this point I am definitely not. I wonder how much ground I've lost this summer as it has been a particularly bad one and continues to be. I have arrived at this point supported by a bungling PA and her MD. My pulmos here have been less than helpful. From the time of my IP Dx until my biopsy in 2004, I didn't even have a chest X-ray which would have shown a fairly high degree of damage with honeycombing and ground glass appearance. We must be our own advocates.ann Interstitial Pneumonitis 1997, IPF 2004, HP 2005

[Guest guest]

hI, gINNY HERE. i LIVE IN VIRGINIA BUT AM MOVING TO SCOTTSDALE, AZ NEXT WEEK TO LIVE WITH MY DAUGHTER WHO REALL WANTS TO TAKE CARE OF ME. NO MORE COOKING, NO MORE CLEANING (NOT THAT I HAVE BEEN SINCE A YEAR AGO) AND NO MORE PAYING RENT WHICH IS GREAT AS FOR THE LAST TEN YEARS SINCE I GOT ON SSDI THE MONTHLY INCOME IS NOT VERY MUCH. I WAS TOLD THAT ARIZONA IS GREAT FOR BREATHING, THAT THERE IS NO HUMIDITY, LIKE VIRGINIA. SO I AM VERY MUCH LOOKING FORWARD TO MY MOVE.

MY LAST DIAGNOSIS LAST MONTH WAS "MODERATE" FOR MY PF. I ALSO DO NOT LIKE MY PULMO AS HE IS VERY COLD. HE ALSO LIKE YOU WHEN HE TOLD ME 1-1/2 YEARS AGO THAT I HAD PF, JUST BLURTED IT OUT AND NEVER TOLD ME EXACTLY WHAT IT WAS EXCEPT FOR SAYING YOU HAVE SCARRING ON YOUR LUNGS. WHAT THAT MEANT TO ME WAS I DIDN'T KNOW WHAT HE WAS TALKING ABOUT. SO COMING HOME I LOOKED IT UP, WENT INTO SHOCK, THEN FOUND THIS WEBSITE. I LOVE READING THESE E-MAILS. IT MAKES ME FEEL LIKE SOMEONE ELSE KNOWS WHAT I AM GOING THROUGH. SO THANK YOU ALL FOR WRITING ABOUT YOUR OWN EXPERIENCES AS I LEARN ABOUT THIS DISEASE THROUGH YOU. GOD BLESS YOU ALL TODAY, GINNY Ginny, IPF6-08,COPD5-98,Richmond,VA

To: Breathe-Support Sent: Monday, September 21, 2009 10:52:09 AMSubject: re: Hypersensitivity Pneumonitis

This is the best I've seen on HP since joining the group. My Dx in 2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy and saw "granulation" that he thought might point to HP, therefore giving me a much better prognosis. He sent the slides to Mayo and they agreed. Five months later following a winter in Arizona, and a long round of prednisone which worked miracles, I was told that if I wanted to stabilize, we would need to relocate to Arizona. We chose instead Utah. Mistake. My pulmo had said that most HP is due to mold and that it should be a dry climate. All the Mojave desert is dry except where people insist on watering big green lawns, golf courses, cemetaries.. . etc.... Here in St. they are very dedicated to their watered lawns and such... leaving excessive amounts of mold

spewing spores and blowing in the breeze. Some yards virtually reek of mold. Too late. We are home owners and not likely to be leaving at this point in the housing market. North Las Vegas would have been a better choice due to their emphasis on desert landscape and the fact that it has never had a lot of irrigation even now. As for my two pulmos here (both gone now), one was very technical but didn't offer anything in the way of teaching or suggestions for prevention. The last one literally gave the impression that I was not there but for my chart on the computer. He said once, with his back to me, "You have IPF." After being told it was secondary to HP by my previous pulmo, he had nothing to add to that statement. He left for a Fellowship and left me high and dry with a handful of prescriptions to last a year. His partner is not taking new patients. So, I am off to

National Jewish next month to see what they think. After reading all the good things about them I am very hopeful that I can be stabilized. At this point I am definitely not. I wonder how much ground I've lost this summer as it has been a particularly bad one and continues to be. I have arrived at this point supported by a bungling PA and her MD. My pulmos here have been less than helpful. From the time of my IP Dx until my biopsy in 2004, I didn't even have a chest X-ray which would have shown a fairly high degree of damage with honeycombing and ground glass appearance. We must be our own advocates.

ann Interstitial Pneumonitis 1997, IPF 2004, HP 2005

[Guest guest]

Ginny,

You will like Arizona, we are moving into the best time of the year, temps in the 90-100 during the day so you can still swim if there is a pool available but dipping to the 70's at night. Now I know that sounds warm but with only say 15% humidity it feels cooler than it is. After you get settled let us know, maybe we can do a lunch!

Dyane Phoenix ipf 02>> hI, gINNY HERE. i LIVE IN VIRGINIA BUT AM MOVING TO SCOTTSDALE, AZ NEXT WEEK TO LIVE WITH MY DAUGHTER WHO REALL WANTS TO TAKE CARE OF ME. NO MORE COOKING, NO MORE CLEANING (NOT THAT I HAVE BEEN SINCE A YEAR AGO) AND NO MORE PAYING RENT WHICH IS GREAT AS FOR THE LAST TEN YEARS SINCE I GOT ON SSDI THE MONTHLY INCOME IS NOT VERY MUCH. I WAS TOLD THAT ARIZONA IS GREAT FOR BREATHING, THAT THERE IS NO HUMIDITY, LIKE VIRGINIA. SO I AM VERY MUCH LOOKING FORWARD TO MY MOVE. > > MY LAST DIAGNOSIS LAST MONTH WAS "MODERATE" FOR MY PF. I ALSO DO NOT LIKE MY PULMO AS HE IS VERY COLD. HE ALSO LIKE YOU WHEN HE TOLD ME 1-1/2 YEARS AGO THAT I HAD PF, JUST BLURTED IT OUT AND NEVER TOLD ME EXACTLY WHAT IT WAS EXCEPT FOR SAYING YOU HAVE SCARRING ON YOUR LUNGS. WHAT THAT MEANT TO ME WAS I DIDN'T KNOW WHAT HE WAS TALKING ABOUT. SO COMING HOME I LOOKED IT UP, WENT INTO SHOCK, THEN FOUND THIS WEBSITE. I LOVE READING THESE E-MAILS. IT MAKES ME FEEL LIKE SOMEONE ELSE KNOWS WHAT I AM GOING THROUGH. SO THANK YOU ALL FOR WRITING ABOUT YOUR OWN EXPERIENCES AS I LEARN ABOUT THIS DISEASE THROUGH YOU. GOD BLESS YOU ALL TODAY, GINNY> Ginny, IPF6-08,COPD5-98,Richmond,VA > > > > > ________________________________> To: Breathe-Support > Sent: Monday, September 21, 2009 10:52:09 AM> Subject: re: Hypersensitivity Pneumonitis> > > This is the best I've seen on HP since joining the group. My Dx in 2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy and saw "granulation" that he thought might point to HP, therefore giving me a much better prognosis. He sent the slides to Mayo and they agreed. Five months later following a winter in Arizona, and a long round of prednisone which worked miracles, I was told that if I wanted to stabilize, we would need to relocate to Arizona. We chose instead Utah. Mistake. > > My pulmo had said that most HP is due to mold and that it should be a dry climate. All the Mojave desert is dry except where people insist on watering big green lawns, golf courses, cemetaries.. . etc.... Here in St. they are very dedicated to their watered lawns and such... leaving excessive amounts of mold spewing spores and blowing in the breeze. Some yards virtually reek of mold. Too late. We are home owners and not likely to be leaving at this point in the housing market. North Las Vegas would have been a better choice due to their emphasis on desert landscape and the fact that it has never had a lot of irrigation even now. > > As for my two pulmos here (both gone now), one was very technical but didn't offer anything in the way of teaching or suggestions for prevention. The last one literally gave the impression that I was not there but for my chart on the computer. He said once, with his back to me, "You have IPF." After being told it was secondary to HP by my previous pulmo, he had nothing to add to that statement. He left for a Fellowship and left me high and dry with a handful of prescriptions to last a year. His partner is not taking new patients. > > So, I am off to National Jewish next month to see what they think. After reading all the good things about them I am very hopeful that I can be stabilized. At this point I am definitely not. I wonder how much ground I've lost this summer as it has been a particularly bad one and continues to be.. I have arrived at this point supported by a bungling PA and her MD. My pulmos here have been less than helpful. From the time of my IP Dx until my biopsy in 2004, I didn't even have a chest X-ray which would have shown a fairly high degree of damage with honeycombing and ground glass appearance. > > We must be our own advocates.> > > ann> Interstitial Pneumonitis 1997, IPF 2004, HP 2005>

[Guest guest]

Ginny, I also have a wonderful pulmodudette, not an expert but very

caring and doesn't have a big ego, when I told her I was going to NJH

for exam she said Go For IT.

Dyane

>

> hI, gINNY HERE. i LIVE IN VIRGINIA BUT AM MOVING TO SCOTTSDALE, AZ

NEXT WEEK TO LIVE WITH MY DAUGHTER WHO REALL WANTS TO TAKE CARE OF ME.

NO MORE COOKING, NO MORE CLEANING (NOT THAT I HAVE BEEN SINCE A YEAR

AGO) AND NO MORE PAYING RENT WHICH IS GREAT AS FOR THE LAST TEN YEARS

SINCE I GOT ON SSDI THE MONTHLY INCOME IS NOT VERY MUCH. I WAS TOLD

THAT ARIZONA IS GREAT FOR BREATHING, THAT THERE IS NO HUMIDITY, LIKE

VIRGINIA. SO I AM VERY MUCH LOOKING FORWARD TO MY MOVE.

>

> MY LAST DIAGNOSIS LAST MONTH WAS " MODERATE " FOR MY PF. I ALSO DO NOT

LIKE MY PULMO AS HE IS VERY COLD. HE ALSO LIKE YOU WHEN HE TOLD ME

1-1/2 YEARS AGO THAT I HAD PF, JUST BLURTED IT OUT AND NEVER TOLD ME

EXACTLY WHAT IT WAS EXCEPT FOR SAYING YOU HAVE SCARRING ON YOUR LUNGS.

WHAT THAT MEANT TO ME WAS I DIDN'T KNOW WHAT HE WAS TALKING ABOUT. SO

COMING HOME I LOOKED IT UP, WENT INTO SHOCK, THEN FOUND THIS WEBSITE. I

LOVE READING THESE E-MAILS. IT MAKES ME FEEL LIKE SOMEONE ELSE KNOWS

WHAT I AM GOING THROUGH. SO THANK YOU ALL FOR WRITING ABOUT YOUR OWN

EXPERIENCES AS I LEARN ABOUT THIS DISEASE THROUGH YOU. GOD BLESS YOU

ALL TODAY, GINNY

> Ginny, IPF6-08,COPD5-98,Richmond,VA

>

>

>

>

> ________________________________

> From: Mike Ferguson mikefergg@...

> To: Breathe-Support

> Sent: Monday, September 21, 2009 10:52:09 AM

> Subject: re: Hypersensitivity Pneumonitis

>

>

> This is the best I've seen on HP since joining the group. My Dx in

2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy

and saw " granulation " that he thought might point to HP, therefore

giving me a much better prognosis. He sent the slides to Mayo and they

agreed. Five months later following a winter in Arizona, and a long

round of prednisone which worked miracles, I was told that if I wanted

to stabilize, we would need to relocate to Arizona. We chose instead

Utah. Mistake.

>

> My pulmo had said that most HP is due to mold and that it should be a

dry climate. All the Mojave desert is dry except where people insist on

watering big green lawns, golf courses, cemetaries.. . etc.... Here in

St. they are very dedicated to their watered lawns and such...

leaving excessive amounts of mold spewing spores and blowing in the

breeze. Some yards virtually reek of mold. Too late. We are home

owners and not likely to be leaving at this point in the housing market.

North Las Vegas would have been a better choice due to their emphasis on

desert landscape and the fact that it has never had a lot of irrigation

even now.

>

> As for my two pulmos here (both gone now), one was very technical but

didn't offer anything in the way of teaching or suggestions for

prevention. The last one literally gave the impression that I was not

there but for my chart on the computer. He said once, with his back to

me, " You have IPF. " After being told it was secondary to HP by my

previous pulmo, he had nothing to add to that statement. He left for a

Fellowship and left me high and dry with a handful of prescriptions to

last a year. His partner is not taking new patients.

>

> So, I am off to National Jewish next month to see what they think.

After reading all the good things about them I am very hopeful that I

can be stabilized. At this point I am definitely not. I wonder how

much ground I've lost this summer as it has been a particularly bad one

and continues to be.. I have arrived at this point supported by a

bungling PA and her MD. My pulmos here have been less than helpful.

From the time of my IP Dx until my biopsy in 2004, I didn't even have a

chest X-ray which would have shown a fairly high degree of damage with

honeycombing and ground glass appearance.

>

> We must be our own advocates.

>

>

> ann

> Interstitial Pneumonitis 1997, IPF 2004, HP 2005

>

[Guest guest]

my daughter just called me on the phone and I was sharing with her some of your e-mails. I told her I felt so lucky compared to all of you and she said, "Mom, you are disabled! You have just not PF but Peripheral Neuropathy and have to wear leg braces and a cane and sometimes your wheelchair; you are on 2 different heart pills a day for atrial fibrillation and 2 different seizure medicines for that disease. Your cholesterol is 300 on medicines and on top of all that you have been hospitalized 13 times over the past 10 years for your lungs. And you have to use oxygen every night for the past 3 years. What do you mean You're Not Disabled! I humbly said, "OH YA" LOL. To me, being disabled is you can't get out of bed to walk to the kitchen, etc. So hence my belief I am not disabled. LOL. God Bless You All Again, Ginny Ginny,

IPF6-08,COPD5-98,Richmond,VA

To: Breathe-Support Sent: Monday, September 21, 2009 1:07:17 PMSubject: Re: re: Hypersensitivity Pneumonitis

hI, gINNY HERE. i LIVE IN VIRGINIA BUT AM MOVING TO SCOTTSDALE, AZ NEXT WEEK TO LIVE WITH MY DAUGHTER WHO REALL WANTS TO TAKE CARE OF ME. NO MORE COOKING, NO MORE CLEANING (NOT THAT I HAVE BEEN SINCE A YEAR AGO) AND NO MORE PAYING RENT WHICH IS GREAT AS FOR THE LAST TEN YEARS SINCE I GOT ON SSDI THE MONTHLY INCOME IS NOT VERY MUCH. I WAS TOLD THAT ARIZONA IS GREAT FOR BREATHING, THAT THERE IS NO HUMIDITY, LIKE VIRGINIA. SO I AM VERY MUCH LOOKING FORWARD TO MY MOVE.

MY LAST DIAGNOSIS LAST MONTH WAS "MODERATE" FOR MY PF. I ALSO DO NOT LIKE MY PULMO AS HE IS VERY COLD. HE ALSO LIKE YOU WHEN HE TOLD ME 1-1/2 YEARS AGO THAT I HAD PF, JUST BLURTED IT OUT AND NEVER TOLD ME EXACTLY WHAT IT WAS EXCEPT FOR SAYING YOU HAVE SCARRING ON YOUR LUNGS. WHAT THAT MEANT TO ME WAS I DIDN'T KNOW WHAT HE WAS TALKING ABOUT. SO COMING HOME I LOOKED IT UP, WENT INTO SHOCK, THEN FOUND THIS WEBSITE. I LOVE READING THESE E-MAILS. IT MAKES ME FEEL LIKE SOMEONE ELSE KNOWS WHAT I AM GOING THROUGH. SO THANK YOU ALL FOR WRITING ABOUT YOUR OWN EXPERIENCES AS I LEARN ABOUT THIS DISEASE THROUGH YOU. GOD BLESS YOU ALL TODAY, GINNY Ginny, IPF6-08,COPD5- 98,Richmond, VA

From: Mike Ferguson <mikefergg (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 10:52:09 AMSubject: re: Hypersensitivity Pneumonitis

This is the best I've seen on HP since joining the group. My Dx in 2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy and saw "granulation" that he thought might point to HP, therefore giving me a much better prognosis. He sent the slides to Mayo and they agreed. Five months later following a winter in Arizona, and a long round of prednisone which worked miracles, I was told that if I wanted to stabilize, we would need to relocate to Arizona.. We chose instead Utah. Mistake. My pulmo had said that most HP is due to mold and that it should be a dry climate. All the Mojave desert is dry except where people insist on watering big green lawns, golf courses, cemetaries.. . etc.... Here in St. they are very dedicated to their watered lawns and such... leaving excessive amounts of mold

spewing spores and blowing in the breeze. Some yards virtually reek of mold. Too late. We are home owners and not likely to be leaving at this point in the housing market. North Las Vegas would have been a better choice due to their emphasis on desert landscape and the fact that it has never had a lot of irrigation even now. As for my two pulmos here (both gone now), one was very technical but didn't offer anything in the way of teaching or suggestions for prevention. The last one literally gave the impression that I was not there but for my chart on the computer. He said once, with his back to me, "You have IPF." After being told it was secondary to HP by my previous pulmo, he had nothing to add to that statement. He left for a Fellowship and left me high and dry with a handful of prescriptions to last a year. His partner is not taking new patients. So, I am off to

National Jewish next month to see what they think. After reading all the good things about them I am very hopeful that I can be stabilized. At this point I am definitely not. I wonder how much ground I've lost this summer as it has been a particularly bad one and continues to be. I have arrived at this point supported by a bungling PA and her MD. My pulmos here have been less than helpful. From the time of my IP Dx until my biopsy in 2004, I didn't even have a chest X-ray which would have shown a fairly high degree of damage with honeycombing and ground glass appearance. We must be our own advocates.

ann Interstitial Pneumonitis 1997, IPF 2004, HP 2005

[Guest guest]

Ginny - I LOVE your attitude. God bless.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Monday, September 21, 2009 1:38:34 PMSubject: Re: re: Hypersensitivity Pneumonitis

my daughter just called me on the phone and I was sharing with her some of your e-mails. I told her I felt so lucky compared to all of you and she said, "Mom, you are disabled! You have just not PF but Peripheral Neuropathy and have to wear leg braces and a cane and sometimes your wheelchair; you are on 2 different heart pills a day for atrial fibrillation and 2 different seizure medicines for that disease. Your cholesterol is 300 on medicines and on top of all that you have been hospitalized 13 times over the past 10 years for your lungs. And you have to use oxygen every night for the past 3 years. What do you mean You're Not Disabled! I humbly said, "OH YA" LOL. To me, being disabled is you can't get out of bed to walk to the kitchen, etc. So hence my belief I am not disabled. LOL. God Bless You All Again, Ginny Ginny, IPF6-08,COPD5-

98,Richmond, VA

From: Ginny <ginnymurphy93@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 1:07:17 PMSubject: Re: re: Hypersensitivity Pneumonitis

hI, gINNY HERE. i LIVE IN VIRGINIA BUT AM MOVING TO SCOTTSDALE, AZ NEXT WEEK TO LIVE WITH MY DAUGHTER WHO REALL WANTS TO TAKE CARE OF ME. NO MORE COOKING, NO MORE CLEANING (NOT THAT I HAVE BEEN SINCE A YEAR AGO) AND NO MORE PAYING RENT WHICH IS GREAT AS FOR THE LAST TEN YEARS SINCE I GOT ON SSDI THE MONTHLY INCOME IS NOT VERY MUCH. I WAS TOLD THAT ARIZONA IS GREAT FOR BREATHING, THAT THERE IS NO HUMIDITY, LIKE VIRGINIA. SO I AM VERY MUCH LOOKING FORWARD TO MY MOVE.

MY LAST DIAGNOSIS LAST MONTH WAS "MODERATE" FOR MY PF. I ALSO DO NOT LIKE MY PULMO AS HE IS VERY COLD. HE ALSO LIKE YOU WHEN HE TOLD ME 1-1/2 YEARS AGO THAT I HAD PF, JUST BLURTED IT OUT AND NEVER TOLD ME EXACTLY WHAT IT WAS EXCEPT FOR SAYING YOU HAVE SCARRING ON YOUR LUNGS. WHAT THAT MEANT TO ME WAS I DIDN'T KNOW WHAT HE WAS TALKING ABOUT. SO COMING HOME I LOOKED IT UP, WENT INTO SHOCK, THEN FOUND THIS WEBSITE. I LOVE READING THESE E-MAILS. IT MAKES ME FEEL LIKE SOMEONE ELSE KNOWS WHAT I AM GOING THROUGH. SO THANK YOU ALL FOR WRITING ABOUT YOUR OWN EXPERIENCES AS I LEARN ABOUT THIS DISEASE THROUGH YOU. GOD BLESS YOU ALL TODAY, GINNY Ginny, IPF6-08,COPD5- 98,Richmond, VA

From: Mike Ferguson <mikefergg (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 10:52:09 AMSubject: re: Hypersensitivity Pneumonitis

This is the best I've seen on HP since joining the group. My Dx in 2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy and saw "granulation" that he thought might point to HP, therefore giving me a much better prognosis. He sent the slides to Mayo and they agreed. Five months later following a winter in Arizona, and a long round of prednisone which worked miracles, I was told that if I wanted to stabilize, we would need to relocate to Arizona.. We chose instead Utah. Mistake. My pulmo had said that most HP is due to mold and that it should be a dry climate. All the Mojave desert is dry except where people insist on watering big green lawns, golf courses, cemetaries.. . etc.... Here in St. they are very dedicated to their watered lawns and such... leaving excessive amounts of mold

spewing spores and blowing in the breeze. Some yards virtually reek of mold. Too late. We are home owners and not likely to be leaving at this point in the housing market. North Las Vegas would have been a better choice due to their emphasis on desert landscape and the fact that it has never had a lot of irrigation even now. As for my two pulmos here (both gone now), one was very technical but didn't offer anything in the way of teaching or suggestions for prevention. The last one literally gave the impression that I was not there but for my chart on the computer. He said once, with his back to me, "You have IPF." After being told it was secondary to HP by my previous pulmo, he had nothing to add to that statement. He left for a Fellowship and left me high and dry with a handful of prescriptions to last a year. His partner is not taking new patients. So, I am off to

National Jewish next month to see what they think. After reading all the good things about them I am very hopeful that I can be stabilized. At this point I am definitely not. I wonder how much ground I've lost this summer as it has been a particularly bad one and continues to be. I have arrived at this point supported by a bungling PA and her MD. My pulmos here have been less than helpful. From the time of my IP Dx until my biopsy in 2004, I didn't even have a chest X-ray which would have shown a fairly high degree of damage with honeycombing and ground glass appearance. We must be our own advocates.

ann Interstitial Pneumonitis 1997, IPF 2004, HP 2005

[Guest guest]

Ginny,

Oh she sounds just like my youngest LOL tell her I will race you in your wheelchair ha ha Your right though most days I don't "feel" disabled, I can still hang my clothes on the washline, must be ok, right? So what if the feet are going numb, I can still walk, must be ok! Yadda Yadda Yadda. I don't really get depressed till I start listing things. Seeing in black and white can be depressing.

You will enjoy it here. Not green like VA but watching the sun shadows on the mountains is a whole nother pleasure.

Dyane Phoenix, ipf 02>> my daughter just called me on the phone and I was sharing with her some of your e-mails. I told her I felt so lucky compared to all of you and she said, "Mom, you are disabled! You have just not PF but Peripheral Neuropathy and have to wear leg braces and a cane and sometimes your wheelchair; you are on 2 different heart pills a day for atrial fibrillation and 2 different seizure medicines for that disease. Your cholesterol is 300 on medicines and on top of all that you have been hospitalized 13 times over the past 10 years for your lungs. And you have to use oxygen every night for the past 3 years. What do you mean You're Not Disabled! I humbly said, "OH YA" LOL. To me, being disabled is you can't get out of bed to walk to the kitchen, etc. So hence my belief I am not disabled. LOL. God Bless You All Again, Ginny> Ginny, IPF6-08,COPD5-98,Richmond,VA > > > > > ________________________________> To: Breathe-Support > Sent: Monday, September 21, 2009 1:07:17 PM> Subject: Re: re: Hypersensitivity Pneumonitis> > > hI, gINNY HERE. i LIVE IN VIRGINIA BUT AM MOVING TO SCOTTSDALE, AZ NEXT WEEK TO LIVE WITH MY DAUGHTER WHO REALL WANTS TO TAKE CARE OF ME. NO MORE COOKING, NO MORE CLEANING (NOT THAT I HAVE BEEN SINCE A YEAR AGO) AND NO MORE PAYING RENT WHICH IS GREAT AS FOR THE LAST TEN YEARS SINCE I GOT ON SSDI THE MONTHLY INCOME IS NOT VERY MUCH. I WAS TOLD THAT ARIZONA IS GREAT FOR BREATHING, THAT THERE IS NO HUMIDITY, LIKE VIRGINIA. SO I AM VERY MUCH LOOKING FORWARD TO MY MOVE. > > MY LAST DIAGNOSIS LAST MONTH WAS "MODERATE" FOR MY PF. I ALSO DO NOT LIKE MY PULMO AS HE IS VERY COLD. HE ALSO LIKE YOU WHEN HE TOLD ME 1-1/2 YEARS AGO THAT I HAD PF, JUST BLURTED IT OUT AND NEVER TOLD ME EXACTLY WHAT IT WAS EXCEPT FOR SAYING YOU HAVE SCARRING ON YOUR LUNGS. WHAT THAT MEANT TO ME WAS I DIDN'T KNOW WHAT HE WAS TALKING ABOUT. SO COMING HOME I LOOKED IT UP, WENT INTO SHOCK, THEN FOUND THIS WEBSITE. I LOVE READING THESE E-MAILS. IT MAKES ME FEEL LIKE SOMEONE ELSE KNOWS WHAT I AM GOING THROUGH. SO THANK YOU ALL FOR WRITING ABOUT YOUR OWN EXPERIENCES AS I LEARN ABOUT THIS DISEASE THROUGH YOU. GOD BLESS YOU ALL TODAY, GINNY> Ginny, IPF6-08,COPD5- 98,Richmond, VA > > > > > ________________________________> From: Mike Ferguson mikefergg (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Monday, September 21, 2009 10:52:09 AM> Subject: re: Hypersensitivity Pneumonitis> > > This is the best I've seen on HP since joining the group. My Dx in 2004 was IPF. My pulmo in ville, Tennessee, looked at the biopsy and saw "granulation" that he thought might point to HP, therefore giving me a much better prognosis. He sent the slides to Mayo and they agreed. Five months later following a winter in Arizona, and a long round of prednisone which worked miracles, I was told that if I wanted to stabilize, we would need to relocate to Arizona. We chose instead Utah. Mistake. > > My pulmo had said that most HP is due to mold and that it should be a dry climate. All the Mojave desert is dry except where people insist on watering big green lawns, golf courses, cemetaries.. . etc.... Here in St. they are very dedicated to their watered lawns and such... leaving excessive amounts of mold spewing spores and blowing in the breeze.. Some yards virtually reek of mold. Too late. We are home owners and not likely to be leaving at this point in the housing market. North Las Vegas would have been a better choice due to their emphasis on desert landscape and the fact that it has never had a lot of irrigation even now. > > As for my two pulmos here (both gone now), one was very technical but didn't offer anything in the way of teaching or suggestions for prevention. The last one literally gave the impression that I was not there but for my chart on the computer. He said once, with his back to me, "You have IPF." After being told it was secondary to HP by my previous pulmo, he had nothing to add to that statement. He left for a Fellowship and left me high and dry with a handful of prescriptions to last a year. His partner is not taking new patients. > > So, I am off to National Jewish next month to see what they think. After reading all the good things about them I am very hopeful that I can be stabilized. At this point I am definitely not. I wonder how much ground I've lost this summer as it has been a particularly bad one and continues to be. I have arrived at this point supported by a bungling PA and her MD. My pulmos here have been less than helpful. From the time of my IP Dx until my biopsy in 2004, I didn't even have a chest X-ray which would have shown a fairly high degree of damage with honeycombing and ground glass appearance. > > We must be our own advocates.> > > ann> Interstitial Pneumonitis 1997, IPF 2004, HP 2005>

[Guest guest]

the first time i went to Penn, i had to fill out a Lenthy questionnaire -- maybe 10 pages-- asking questions about exposures to x y and z == birds, farms, jobs, too long ago to remember all of the questions

plus i was too new and scared at the time

went home and made a list of my life -- where i lived, worked , etc

nothing clicked

hence it's still idiopathic

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Hypersensitivity PneumonitisTo: Breathe-Support Date: Sunday, September 20, 2009, 10:33 AM

Hi all,

I received this email from a board member. I thought his story was valuable and contained lessons worth learning for all of us. There are times when a cause for pulmonary fibrosis can't be identified easily and then there are times when the cause can be identified but it required persistance. Joyce Rudy is a good example of this.

This gentleman, Bruce is his name (same name, different member) tells a similar story. With his permission I'm sharing it with all of you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: "bruce351 (AT) ymail (DOT) com" <bruce351 (AT) ymail (DOT) com>To: mbmurtha (AT) yahoo (DOT) comSent: Saturday, September 19, 2009 1:17:13 AMSubject: IPF HOT TUBS AND HP

I read your post about HOT TUB PROBLEMS and I would like to share something with you. I have 2 lung diseases, I first became sick with a lung disease called HYPERSENSITIVITY PNEUMONITIS (HP)from the oils where I worked as a Punch Press setup operator. The oil had been contaminated with a Parasitic Mold which I would breath in every day as I would spray the sheet metal with the oils from a plastic spray bottle and also from the spray from the 550 ton press coming together and forming the parts. After becoming sick with HP my lungs became scarred and continue to scar (PULMONARY FIBROSIS) from the inflammation and side affects of being exposed to the oils. I have a feeling that if some of the people with

IPF or unknown cause to their PF would look back at their live that maybe they may or may not figure out what caused their illness.. HP has changed my life because I can not be exposed to fumes,perfume, smoke,cologne, strong odors like in the shopping isles like laundry soap, bleach,car and truck exhaust.hot and cold extremes in the weather or I am sick for hours and even days and every exposure only causes more lung scarring. HP can come from INDOOR POOLS ,HOT TUBS, MOLDY HAY, BIRDS AND JUST MOLD IN THE ROOF OR STRUCTURE OF YOUR HOME OR WORK PLACE. HP is know as pigeon breeds disease,mushroom works lung, farmers lung as well as work related lung problems from METAL WORKING FLUIDS. I have been fighting this disease since 2003 and also work comp since May 2005 but we have won our case in court as well as the appeal that my work place filed but we are still waiting for another court date to get

help with oxygen supplies,meds and my loss of earnings for what is left of my life, I hope that you take the time to find out what exactly is wrong or may have caused your illness because knowing will help you to avoid the problems and maybe save some of your lungs. I read these posts all of the time I am kind of a back seat driver that watches what goes by but never chime in but I thought that If I can save or help just one person from the life that I have to live like the boy in the glass bubble that maybe that was GODS plans for me to get this disease to begin with because I can not figure out why I would get a disease that has taken almost everything that I enjoyed in life away from me. I am car CRAZY but car exhaust and fumes kill me , I use to ride my TREK BIKE 100 TO 150 MILES ON Saturdays or just on my day off but now just going up the

stairs to go to bed kills me. I use to love to go to car shows and drag races but the tire smoke kills me. I hope that you can help out by checking into HYPERSENSITIVITY PNEUMONITIS and help spread the word the maybe we can find out what caused some of these unknown causes of IPF.

THANKS FOR YOUR TIME AND GOD BLESS