Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Actually we have to do our own homework. Most ALL docs are not familiare with my other whamy. Probably why I had my lungs damaged. I told my doc what to avoid. he said hogwash, look at me now. One week in hospital no lungs. there is no real thing writtem for us. Most is trial and error. I have to study most everything myself. I have a ceramic mask, since I cnnot use plastic, I am trying to learn about the systems before I go for the oxygen. I was given by my Doc also an inhaler, an albuterol with my whamy. Another mistake, he should have given me HFA with no propelant which is a lung irritant. I have to know myself. I was woundering why I could not breathe with albuteral (white) it was the propelant in it. Unlike everyone here I have an obstacle to tretment, a big one. So i try to gather as much info as possible before I go to pulmanry and get the wrong thing since he too does not know of my other dilema. dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18 Re: ABout OxygenSystems Please!!!! Hi Mayleen, I don't quite know what you're after here, but at home I have a concentrator that runs off of the mains. It's suitable for up to 4L continuous flow. If I have a powercut I have a large oxygen bottle that I can hook up to. When I'm out and about I have small gas bottles which are about 19inches high that go in a back pack. They're ok, except that as I'm often on 6L while out they only last just over an hour. Is this the sort of thing you wanted? Love Ze xx >> > Please give alot of detail about oxygen systems. I need to figure out> which is best for me with double whamy and would like to know details of> them. Also if you have backup generators for your systems? What kind?> > Thank you!!!!!!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 What is your other "whamy" ?  How was your ILD diagnosed? Peggy, ipf 6/04 Florida  ♡Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Actually we have to do our own homework. Most ALL docs are not familiare with my other whamy. Probably why I had my lungs damaged. I told my doc what to avoid. he said hogwash, look at me now. One week in hospital no lungs. there is no real thing writtem for us. Most is trial and error. I have to study most everything myself. I have a ceramic mask, since I cnnot use plastic, I am trying to learn about the systems before I go for the oxygen. I was given by my Doc also an inhaler, an albuterol with my whamy. Another mistake, he should have given me HFA with no propelant which is a lung irritant. I have to know myself. I was woundering why I could not breathe with albuteral (white) it was the propelant in it. Unlike everyone here I have an obstacle to tretment, a big one. So i try to gather as much info as possible before I go to pulmanry and get the wrong thing since he too does not know of my other dilema. dragonflymcsMayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18                Re: ABout OxygenSystems Please!!!!Hi Mayleen,I don't quite know what you're after here, but at home I have a concentrator that runs off of the mains. It's suitable for up to 4L continuous flow. If I have a powercut I have a large oxygen bottle that I can hook up to. When I'm out and about I have small gas bottles which are about 19inches high that go in a back pack. They're ok, except that as I'm often on 6L while out they only last just over an hour.Is this the sort of thing you wanted?Love Ze xx>> > Please give alot of detail about oxygen systems. I need to figure out> which is best for me with double whamy and would like to know details of> them. Also if you have backup generators for your systems? What kind?> > Thank you!!!!!!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Mayleen, do you have an allergy to the plastic? Is there anything other than a ceramic mask that is available to you to use. If you do have an allergy are there other plastics that would be suitable for you? Most of us use the nasal canulas, which I think are the least obvious and most convenient way of delivering the O2 into our systems. I do have a full mask, but thats only for when I have a bad cold and my nose is too stuffed up. I find that I know more about my needs and requirements than some of the docs and even if I'm seeing a specialist for one condition I have to remind him that I can't take or do something that is being suggested due to other conditions or meds that I have. Love Ze xx > >> > > > Please give alot of detail about oxygen systems. I need to figure out> > which is best for me with double whamy and would like to know details of> > them. Also if you have backup generators for your systems? What kind?> > > > Thank you!!!!!!> >> Quote Link to comment Share on other sites More sharing options...
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