Re: Re: Hypersensitivity Pneumonitis

[Guest guest]

Bruce and Beth-

Yes, hypersensitivity pneumonitis will kill you if you don't recognize what is causing the sensitivity! It kills! I am so fortunate that I went to Jewish! I am so fortunate! My doctor this time said if I had kept the birds one more year then my scarring would have become irreversible and might as well be IPF. As it is, I still show the possibity of continued scarring but Jewish has high hopes that it won't happen...but it is possible. It is VERY important to find out what is causing your fibrosis if possible. Going to a place of excellence is vital! If you can at all do it then I would tell you to do it! I know at Denver there are motels which are very cheap because you are a NJ patient and NJ does take Medicare! I can't tell you how much I think it is so important to see a center of excellence! My pulmodude would have killed me if I just accepted his diagnoses. Hypersensitivity pneumonitis is a killer.....especially undiagnosed! I very much enjoyed Bruce's letter and it is strangely nice to see someone else on the board has Hypersensitivity Pneumonitis...Joyce Rudy AZ Birds

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]

anne- you will LOVE National Jewish! They take time with you and explain things to you and the tests they run you may never have ever heard of! It is just the most wonderful place. I know you will have a great experience! Joyce Rudy AZ birds

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]

Hi Ginny! Welcome to ARizona! You'll love it here accetp the phoenix area can be quite hot! LOL Now up here where I live it's not so bad. LOL Joyce Rudy, AZ birds

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