Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 Just wanted to check in with everyone, been reading all of the emails and wanted to share some of my thoughs and findings about this nasty lung thing. I to was on predisone (can you say pilsbury dough boy) until we found what we think caused my fibrosis, MOLD. after getting away from the source my breathing and cough improved so much that the doc. slowly took me of predisone. every ounce-in-awhile my breathing and cough would get worse, so, i started to pay attention as to what could be causing my lung irritations. I made a list and found the following to be very irritating; smoke, perfume and aftershave (not all) but i knew whom to stay a safe distance, grass (particuately fresh cut, hence i don't golf anymore), fresh brewed coffee (really bad), coconut, air fresheners and cooked (such as coconut shrimp),again very bad, gasoline and oil products, pine; trees, air fresheners and cleaning products, glue, paint, stain, varnish and heat, cool flowing air is best. i try to avoid groups of people gathered in one room, too much perfume and aftershave. i was wondering if others have found any of these, or other, irritates? thanks for all your emails and comments. ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 P.S. i'm taking 2 500mg of cellcept twice daily and 1 bactrim M-W-F. good mourning Just wanted to check in with everyone, been reading all of the emails and wanted to share some of my thoughs and findings about this nasty lung thing. I to was on predisone (can you say pilsbury dough boy) until we found what we think caused my fibrosis, MOLD. after getting away from the source my breathing and cough improved so much that the doc. slowly took me of predisone. every ounce-in-awhile my breathing and cough would get worse, so, i started to pay attention as to what could be causing my lung irritations. I made a list and found the following to be very irritating; smoke, perfume and aftershave (not all) but i knew whom to stay a safe distance, grass (particuately fresh cut, hence i don't golf anymore), fresh brewed coffee (really bad), coconut, air fresheners and cooked (such as coconut shrimp),again very bad, gasoline and oil products, pine; trees, air fresheners and cleaning products, glue, paint, stain, varnish and heat, cool flowing air is best. i try to avoid groups of people gathered in one room, too much perfume and aftershave. i was wondering if others have found any of these, or other, irritates? thanks for all your emails and comments. ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 Ken Absolutely find those a problem but I'm lifelong allergy sufferer. Worst single one for me is oranges or anything with orange fragrance or even flavoring. My throat will start closing within a minute and my nose will feel it. If I don't immediately get away plus take double benedryl, within 30 minutes I'd have a sore throat, congestion and be running a fever of 103 to 104. Now, second worst is oil paint. Cut grass you mentioned. I can smell lawn being mowed from the fourth floor of an office building. I have same problems you do with smoke (so glad I live in a smoke free city) and with any fragrance, whether perfume or cologne. I have to use non fragranced shampoos and everything else. Coconut isn't on my bad list. However, air fresheners absolutely are. When they really become toxic is when they are used up. Add to that moth balls which should be outlawed. Now, I also can't deal with the cedar balls or really anything cedar. Pine trees or fragrance are instant disaster. Pretty much any flower is a problem. Some cooking is a problem but not too much. Gasoline, you mention. I wear medical gloves when filling my tank. I also do best in cooler air indoors which accounts for my electric bill. Add to that I use only fragrance free detergents too and no dryer sheets. Unfortunately, nothing to do about the air outside. Now, all that sounds like a lot but in reality I've been this way so long that I long ago got use to it, got good at avoidance, and got good at hitting any allergic reaction with immediate strong response. I immediately take two benedryl if I encounter something about to cause a strong reaction. (Note: I'm not recommending this method to anyone-its just what doctors told me to do nearly 40 years ago at Duke). Then if I think its still battling to get me, I'll take one or two more in about six hours. Basically, its pretty much what they'd give me in ER but that would be way too late. All I can suggest to anyone is the following: Be aware if certain things are irritating you and learn what they are so you can avoid them and be cautious where you have a choice and can avoid additional fragrances or chemicals. My reaction is allergies and lifetime but I know many with PF are now experiencing such. I think for most its not one thing but its the totality of all that surrounds them today. Healthy people sometimes get use to fragrances and don't smell them as much so increase the amount. You've seen it on girls you thought were marinating themselves in perfume. We have a friend who has worn the same perfume for years but she doesn't smell it so the quantities have increased each year. Well, we do the same on other things. The one small air freshener you started with now may have grown into one per room and two in the living room. You're not even aware anymore. Something like a shampoo or a body lotion or a detergent or fabric softener may seem very mild but then you're inhaling the fragrance every minute of the day. It's just like an allergic skin reaction. With that or nose or breathing if you feel some reaction may be there, switch and see if it changes. So, I'm not a crusader on the subject but just suggesting awareness like Ken found. If everytime you do something or are somewhere or around something you get congested its probably not coincidence. Its really no different than a food that upsets your stomach and learning thats one you're best off avoiding. > > Just wanted to check in with everyone, been reading all of the emails and wanted to share some of my thoughs and findings about this nasty lung thing. > I to was on predisone (can you say pilsbury dough boy) until we found what we think caused my fibrosis, MOLD. after getting away from the source my breathing and cough improved so much that the doc. slowly took me of predisone. > every ounce-in-awhile my breathing and cough would get worse, so, i started to pay attention as to what could be causing my lung irritations. I made a list and found the following to be very irritating; smoke, perfume and aftershave (not all) but i knew whom to stay a safe distance, grass (particuately fresh cut, hence i don't golf anymore), fresh brewed coffee (really bad), coconut, air fresheners and cooked (such as coconut shrimp),again very bad, gasoline and oil products, pine; trees, air fresheners and cleaning products, glue, paint, stain, varnish and heat, cool flowing air is best. i try to avoid groups of people gathered in one room, too much perfume and aftershave. > i was wondering if others have found any of these, or other, irritates? > thanks for all your emails and comments. > ken > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 , Yes! to all the things you've listed and then some! The lung irritations do not cause the PF...they just make it uncomfortable to breathe! Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Overman wrote: Just wanted to check in with everyone, been reading all of the emails and wanted to share some of my thoughs and findings about this nasty lung thing. I to was on predisone (can you say pilsbury dough boy) until we found what we think caused my fibrosis, MOLD. after getting away from the source my breathing and cough improved so much that the doc. slowly took me of predisone. every ounce-in-awhile my breathing and cough would get worse, so, i started to pay attention as to what could be causing my lung irritations. I made a list and found the following to be very irritating; smoke, perfume and aftershave (not all) but i knew whom to stay a safe distance, grass (particuately fresh cut, hence i don't golf anymore), fresh brewed coffee (really bad), coconut, air fresheners and cooked (such as coconut shrimp),again very bad, gasoline and oil products, pine; trees, air fresheners and cleaning products, glue, paint, stain, varnish and heat, cool flowing air is best. i try to avoid groups of people gathered in one room, too much perfume and aftershave. i was wondering if others have found any of these, or other, irritates? thanks for all your emails and comments. ken No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.7/1628 - Release Date: 8/22/2008 6:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 Hi ken, As I was reading your post, I became very interested in how you arrived at the conclusion that MOLD could be the reason for your PF? MOLD has always been what I believe, has caused my IPF also. Has your Dr. arrived at the same conclusion? If so, how? I would like to explain it to my Dr. ---I don't think he knows what mold is --he lives in Arizona. G. UIP/IPF 5/07 Az. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 good morning scott although there has'nt been a through test to confirm (and i've had 4 biopsys to confirm that i have PF) that mold caused my PF i'm convinced, and 2 pulmo drs. are highly suspect that mold my have been the contributing factor. after a through review of my working and living history mold seems to be the only one thing i was exposed to. i lived in visalia from 1996 to 2003 7 yrs. in a very old apartment with a swamp cooler and then from 2003 to the discovery of mold in my mother's house shortly after she passed in march 2007 a little over 4 yrs. mold was every where particulary in the closet next to the shower in the bedroom i was in. as soon as i got out of the house i was able to breath a lot better and my cough was reduced by atleast 95% the house has been completely clearned and all the mold removed and the house is ready for sale. so, let me restate, so as not to miss lead any one and get in trouble with people in the support group, and my doctor, mold has not been confirmed, but it is highly suspect. I hope this helps. ken Re:good mourning Hi ken, As I was reading your post, I became very interested in how you arrived at the conclusion that MOLD could be the reason for your PF? MOLD has always been what I believe, has caused my IPF also. Has your Dr. arrived at the same conclusion? If so, how? I would like to explain it to my Dr. ---I don't think he knows what mold is --he lives in Arizona. G. UIP/IPF 5/07 Az. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Were you diagnosed with Hypersensitivity Pnemonitis? Joy in Seattle > > good morning scott > although there has'nt been a through test to confirm (and i've had 4 biopsys to confirm that i have PF) that mold caused my PF i'm convinced, and 2 pulmo drs. are highly suspect that mold my have been the contributing factor. > after a through review of my working and living history mold seems to be the only one thing i was exposed to. > i lived in visalia from 1996 to 2003 7 yrs. in a very old apartment with a swamp cooler and then from 2003 to the discovery of mold in my mother's house shortly after she passed in march 2007 a little over 4 yrs. mold was every where particulary in the closet next to the shower in the bedroom i was in. > as soon as i got out of the house i was able to breath a lot better and my cough was reduced by atleast 95% the house has been completely clearned and all the mold removed and the house is ready for sale. > so, let me restate, so as not to miss lead any one and get in trouble with people in the support group, and my doctor, mold has not been confirmed, but it is highly suspect. > I hope this helps. > ken > > > > Re:good mourning > > > Hi ken, > As I was reading your post, I became very interested in how you arrived at the conclusion that MOLD could be the reason for your PF? MOLD has always been > what I believe, has caused my IPF also. Has your Dr. arrived at the same conclusion? > If so, how? I would like to explain it to my Dr. ---I don't think he knows what mold is --he lives in Arizona. > G. UIP/IPF 5/07 Az. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi, joy. no, the original diagnosis is IPF, i have become highly senitive to these irritantes as the decease progressed, and will give this list to my dr. at the next appointment for his consideration. none of these irritantes ever bothered me before the decease devoloped with the exception of smoke, which was normal. always loved the smell of coconut, fresh cut grass, some of which now almost make me pass out till i get away from it. ken Re:good mourning> > > Hi ken,> As I was reading your post, I became very interested in how you arrived at the conclusion that MOLD could be the reason for your PF? MOLD has always been> what I believe, has caused my IPF also. Has your Dr. arrived at the same conclusion?> If so, how? I would like to explain it to my Dr. ---I don't think he knows what mold is --he lives in Arizona.> G. UIP/IPF 5/07 Az.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 hypersensitivity pnemonitis? thats a good question and will discuss this with my dr. thanks ken Re:good mourning> > > Hi ken,> As I was reading your post, I became very interested in how you arrived at the conclusion that MOLD could be the reason for your PF? MOLD has always been> what I believe, has caused my IPF also. Has your Dr. arrived at the same conclusion?> If so, how? I would like to explain it to my Dr. ---I don't think he knows what mold is --he lives in Arizona.> G. UIP/IPF 5/07 Az.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 thanks again joy, i just read about this on the Internet and will definitely bring this to my Dr's. attention. ken Re:good mourning> > > Hi ken,> As I was reading your post, I became very interested in how you arrived at the conclusion that MOLD could be the reason for your PF? MOLD has always been> what I believe, has caused my IPF also. Has your Dr. arrived at the same conclusion?> If so, how? I would like to explain it to my Dr. ---I don't think he knows what mold is --he lives in Arizona.> G. UIP/IPF 5/07 Az.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Ken, Thank you for the explanation. G. Quote Link to comment Share on other sites More sharing options...
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