Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hello everyone-I am new to this site . I would like to know if anyone on this site has " hypersensitivity pneumonitits " which I have been diagnosed with. Mine was caused by mold of an unknown source. I am 57 and had to retire from teaching when this was discovered. I was told it is very rare ( aren't I the lucky one). I don't qualify for workman's comp because we haven't been able to prove it came from the workplace even though I taught for 34 years with old carpet in my classroom. The carpet was removed shortly before my disease was discovered so proof is impossible. I am on oxygen full time unless I'm sitting and then I can take it off. I was wondering if anyone else has problems with water (used for keeping your sinus's moist) coming through the tube at night? It gets so bad that I end up turning off the oxygen because I can't sleep which I know I shouldn't do. I also have not been given a prognosis-just that this disease stair-steps and each downward level is worse than the previous one. It's scarey not knowing what to expect-maybe I don't want to know. any comments would be greatly appreciated. Thanks, Ronnie --- Breathe-Support wrote: > There are 18 messages in this issue. > > Topics in this digest: > > 1. Chat? > From: " sotex78572 " > > 2. Re: Chat? > From: zimmytoo@... > 3. Re: Pulmonary Fibrosis > From: zimmytoo@... > 4. Re: In the hospital > From: zimmytoo@... > 5. Re: Postural Drainage > From: zimmytoo@... > 6. Re: first specialist appointment? > > 7. Re: Biopsy results in > > 8. Hi Leanne > > 9. Hi Owen > From: Leanne Storch > > 10. Re: nose > From: dianequinlan@... > 11. Re: first specialist appointment? > > 12. Re: Hi Owen > > 13. Re: nose > > 14. Re: Re: nose > From: dianequinlan@... > 15. Re: In the hospital > From: dianequinlan@... > 16. Re: first specialist appointment? > From: dianequinlan@... > 17. Re: Re: first specialist appointment? > > 18. Re: Re: Want to say hello as I am new here > From: dianequinlan@... > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Sat, 04 Mar 2006 01:27:37 -0000 > > Subject: Chat? > > How is the chat room scheduled? I never seem to > find any activity. > > I'm really looking forward to meeting you all. > > Kitty, aka sotex78572 > > > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Sat, 04 Mar 2006 02:35:42 +0000 > From: zimmytoo@... > Subject: Re: Chat? > > Hi Kitty, > Welcome. You write, we write back. Seems we are all > over the US, I'm usually on line from 6 to 9PM > Pacific time. It's similar to chat, only nobody will > ever know if you type slow! > Carman > > -------------- Original message -------------- > > How is the chat room scheduled? I never seem to > find any activity. > > I'm really looking forward to meeting you all. > > Kitty, aka sotex78572 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Ronnie, Water will get in the line sometimes when the bottle is too full. You are supposed to remove the bottle and let the air dry the tubing out if water does get in it. The company that provides mine said that I should replace it if there is any chance of moisture being retained in the tubing. I have had the tubing begin to look discolored and I change it. I have also had the water bottle malfunction and throw water into the line. Just a hassle like everything else. They called my disease Lupus Pneumonitis. But then the diagnosis became Pulmonary Fibrosis secondary to Lupus. I am in end stage now, so they tell me. Has been 8 years. I still drive, shop, cook, go out with friends, etc.........just can't do housework..HA! HA! But, I do that too..slowly. I believe that doctors don't give us answers because they do not have them. That does sound like a vague diagnosis. Never heard of it. Have you searched the web? Keep breathing...Hugs, Joyce > > > There are 18 messages in this issue.> > > > Topics in this digest:> > > > 1. Chat?> > > 2. Re: Chat?> > > 3. Re: Pulmonary Fibrosis> > > 4. Re: In the hospital> > > 5. Re: Postural Drainage> > > 6. Re: first specialist appointment?> > > 7. Re: Biopsy results in> > > 8. Hi Leanne> > > 9. Hi Owen> > > 10. Re: nose> > > 11. Re: first specialist appointment?> > > 12. Re: Hi Owen> > > 13. Re: nose> > > 14. Re: Re: nose> > > 15. Re: In the hospital> > > 16. Re: first specialist appointment?> > > 17. Re: Re: first specialist appointment?> > > 18. Re: Re: Want to say hello as I am new here> > > > > > >> ________________________________________________________________________> >> ________________________________________________________________________> > > > Message: 1 > > Date: Sat, 04 Mar 2006 01:27:37 -0000> > > Subject: Chat?> > > > How is the chat room scheduled? I never seem to> > find any activity.> > > > I'm really looking forward to meeting you all.> > > > Kitty, aka sotex78572> > > > > > > > > > > >> ________________________________________________________________________> >> ________________________________________________________________________> > > > Message: 2 > > Date: Sat, 04 Mar 2006 02:35:42 +0000> > > Subject: Re: Chat?> > > > Hi Kitty,> > Welcome. You write, we write back. Seems we are all> > over the US, I'm usually on line from 6 to 9PM> > Pacific time. It's similar to chat, only nobody will> > ever know if you type slow!> > Carman> > > > -------------- Original message -------------- > > From: "sotex78572" kittyandcarl@... > > How is the chat room scheduled? I never seem to> > find any activity.> > > > I'm really looking forward to meeting you all.> > > > Kitty, aka sotex78572> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Ronnie - Don't feel bad...there aren't any other people with my diagnosis either. That kind of luck, we don't need, right? When I had an older model concentrator, I used to get water that came into my nose, too. And I used to spend all night trying to shake the water out....only to lay down and have more water in my nose again! When I called my home care company, they sent me a trap that you place between the tubing and your nasal cannula and any water would accumulate there. It did help and I didn't get any more water. Then, they gave me a new concentrator and I don't have that problem. You need to start with dry tubing every night....change the tubing and hang up the one from the previous night over the shower or somewhere where it will dry out. I thought about taking a can of pressurized air and blowing it through the tubing, but I didn't get around to doing that. Either try rotating between 2 tubings or ask for a water trap....whoever wrote about the himidy bottle being too full was right, too. You can always call the company that supplies your equipment...they should help you troubleshoot, too. If they can't figure it out by phone, then tell them you want someone to come out and look at it. You shouldn't have to be up all night because water is in your nose...unless you are a fish, that's not good!!! But DON'T turn off your oxygen!! --Diane Quinlan dianequinlan@... I was wondering if anyone else hasproblems with water (used for keeping your sinus'smoist) coming through the tube at night? It gets sobad that I end up turning off the oxygen because Ican't sleep which I know I shouldn't do. I also havenot been given a prognosis-just that this diseasestair-steps and each downward level is worse than theprevious one. It's scarey not knowing what toexpect-maybe I don't want to know. any comments wouldbe greatly appreciated. Thanks, Ronnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi Ronnie and Diane, I too have a time with the tubing. I was told to change the tubing once a week, the cannula also. The water bottle I change once a week. I was told they can not be sanitized enough to take the chance so my oxygen company brings me bags full. I use 50' tubing. It's a pain in the ---- but beats the alternative. I am on 24/7 2L sitting, but I bought an oximeter and have found I can sit without my gas going to the bottom. I go up to as much as 4L if I am trying to exercise.. That is so funny, ME doing exercise. But they tell me if I want a new lung I have to so I do as much as I can. Good Luck and God Bless. Peggy on 3/4/06 9:42 PM, dianequinlan@... at dianequinlan@... wrote: Ronnie - Don't feel bad...there aren't any other people with my diagnosis either. That kind of luck, we don't need, right? When I had an older model concentrator, I used to get water that came into my nose, too. And I used to spend all night trying to shake the water out....only to lay down and have more water in my nose again! When I called my home care company, they sent me a trap that you place between the tubing and your nasal cannula and any water would accumulate there. It did help and I didn't get any more water. Then, they gave me a new concentrator and I don't have that problem. You need to start with dry tubing every night....change the tubing and hang up the one from the previous night over the shower or somewhere where it will dry out. I thought about taking a can of pressurized air and blowing it through the tubing, but I didn't get around to doing that. Either try rotating between 2 tubings or ask for a water tr -- Diane Quinlan dianequinlan@... I was wondering if anyone else has problems with water (used for keeping your sinus's moist) coming through the tube at night? It gets so bad that I end up turning off the oxygen because I can't sleep which I know I shouldn't do. I also have not been given a prognosis-just that this disease stair-steps and each downward level is worse than the previous one. It's scarey not knowing what to expect-maybe I don't want to know. any comments would be greatly appreciated. Thanks, Ronnie Quote Link to comment Share on other sites More sharing options...
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