Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Joyce, The Helios freezes up when it's first filled...let it " warm up " for at least 15 minutes before using it. I try to fill it about 1 hour before I know I'm going out...it lasts for about 6 hours if I need more than 2- lpm. I hate the puffing sound but I need the " freedom " it gives me to be out and about. I do have an extra back-up unit if I know that my time out might be longer. The SOB gets bad in very cold and windy weather and in hot humid weather with the Helios...the unit doesn't seem to like those conditions and neither do I. I agree that dealing with illness is very difficult...the NSIP has really gotten me down and I frequently feel like waving the white flag !!!Then I look at my gorgeous 1 year old grand daughter and realize that she's the best thing that has happened and I just find the energy to keep going. I get to a therapist regularly...that's been very helpful. Joyce wrote: > , > > Don't you have trouble with the helios freezing up? I had it for > awhile and I loved that I could carry it so easily but everytime I > had somewhere really important to go, it would freeze up upon > filling. It also doesn't last long enough. For awhile they let me > have tanks for back up, but that changed and I had to go back to the > tanks. > > The brain fog that you mentioned under another name is common to > people gasping for oxygen. Hey, at least we have something to blame > it on. > > I try not to be negative, but eventually we all have negative feelings > and spew them out. We here on the board try to lift up the ones who > are down. Dealing with a chronic illness, especially a life > threatening illnes, is emotionally devastating. I have always been > strong and independant, but this monster has brought me to my knees. > > Glad to have you here. > > Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA > > > > > > > > > > > , > > > Prednisone diminishes the inflammation in your lungs. It is a > > > miracle drug. I used it for 20 years and did not get fat or become > > > fixated on a psychosis. I also worked full time. > > > When I stopped using it four years ago the irreversible scarring > > > of my lungs began. > > > Wish I had known then what I know now. > > > Cant imagine if you have had IPF since 2005 that it has not been > > > prescribed > > > D. Fl. > > > > ------------------------------------------------------------------------ > > > *From:* Breathe-Support > > > [mailto:Breathe-Support ] *On Behalf Of *squan_beach > > > *Sent:* Monday, December 11, 2006 11:15 AM > > > *T:* Breathe-Support > > > *Subject:* steroids > > > I am a newbie with IPF. I have been reading the postings for > > > awhile now > > > and would really like to draw from those of you with more experience > > > with this disease. My pulm dr is pushing me to start steroids. I am > > > reluctant to start since most of what I have read indicates that it's > > > not very helpful with this form of the disease, so, my questions for > > > those of you who have taken steroids is: Did the steroids help ? How > > > was the quality of your life effected, and if you had it to do over > > > would you even start steroids ? > > > Thanks for your help, (NJ) IPF 2005 > > > > > > > > > > ------------------------------------------------------------------------ > > > Have a burning question? Go to Yahoo! Answers > > > > <http://answer.yahoo.com/;_ylc=X3oDMTFvbGNhMGE3BF9TAzM5NjU0NTEwOARfcwMzOTY1NDUxM\ DMEc2VjA21haWxfdGFnbGluZQRzbGsDbWFpbF90YWcx> > > > > and get answers from real people who know. > > > > > > > > > > > > >------------------------------------------------------------------------ > > > > > >No virus found in this incoming message. > > >Checked by AVG Free Edition. > > >Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: > 12/9/2006 > > > > > > > > >------------------------------------------------------------------------ > >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.1.409 / Virus Database: 268.15.16/582 - Release Date: 12/11/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 The Doctors are not sure, but Behcets is an auto-immune disease as is RA and I think IPF is also. I also have Reynauds syndrone, another auto immune icky! I have two sisters who are deceased and the both of them had multiple sclerosis as well as a nephew. They are now all deceased. I am beginning to believe in genetics more than ever. Thanks for the concern Hugs, Louise/ipf/96/CaJoyce wrote: Louise, I was put on 60mg immediatly after biopsy and diagnosis almost 10 years ago. After a few months and rehab I was slowly weaned off. Then after a couple of years I ended back in the hospital with pneumonia for a week. Back on 60mgs again. Since weaning, I have been on low doses. The low doses do not bother me, but the high doses are murder. Weight gain, sleeplessness, emotional stress...the whole bag of misery. Would I go on high doses again? I will do whatever the doc tells me...I am only here because of the mercy of God and the good care of my doc. I just looked up Behcet's disease. I had never heard of it. Sounds painful and miserable. Do the doctors think it had anything to do with the onset of PF? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA > I have actually been refusing the drug because of everything I read, so I appreciate your experience. that's why I asked, > > > > > > ---------------------------------> Any questions? Get answers on any topic at Yahoo! Answers. Try it now.> Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 i too have raynauld's and am prescribed procardia for that. EG 10-05 > > I have actually been refusing the drug because of everything I read, so I appreciate your experience. that's why I asked, > > > > > > > > > > > > --------------------------------- > > Any questions? Get answers on any topic at Yahoo! Answers. Try it now. > > > > > > > > > --------------------------------- > Everyone is raving about the all-new Yahoo! Mail beta. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Welcome to the group . I'm still trying to decide what I think about steroids myself. I'm always glad to hear that they work for people, I'm glad when anything works for people. I've been on them for a whole year not. I don't know if they have made a difference or not. I don't think I initially felt a difference. I don't know if they made a difference after my OLBiop. I'm seriously thinking of weaning myself off them to see if they really do make a difference. Its a hard call. Anyway, welcome aboard. LynnA >> I am a newbie with IPF. I have been reading the postings for awhile now > and would really like to draw from those of you with more experience > with this disease. My pulm dr is pushing me to start steroids. I am > reluctant to start since most of what I have read indicates that it's > not very helpful with this form of the disease, so, my questions for > those of you who have taken steroids is: Did the steroids help ? How > was the quality of your life effected, and if you had it to do over > would you even start steroids ? > Thanks for your help, (NJ) IPF 2005> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Hi, I just have to add to this subject. I know that while I was in the hosp. in July steroids helped save my life. But I also have some of the bad, bad, bad side effects. I am having my second cataract off on Tuiesday. Also I am now diabetic and have glocoma. I have gained over 50 lbs, have high blood pressure. It is a double edged sword. All I can say is I wish better health for everyone. Quote Link to comment Share on other sites More sharing options...
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