Re: Good news Cees and Peggy

[Guest guest]

Cees,Even though there are concentrators with higher liter flow, please do not suggest this to your friend with copd. Copd patients have a reverse problem from us---they can get enough air in but cannot get rid of their air and thus develop an excess of C02 which can be deadly for them. Their supplement oxygen needs are monitored pretty closely and they are told to not turn their flow up without approval.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

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> > > Beth,> I am SO happy to hear about your good news. You definitely deserve all the good news you can get. I'm also happy to hear that you'll be able to share it with family on Thanksgiving.> > Congratulations to everyone else who has recently gotten good news. So many seem to be getting negative news lately & I'm sorry to hear about that. It's so hard to respond to everyone, but please know that my best wishes & prayers are with you all.> > Just learned today that I tested positive for sleep apnea even though I didn't think I slept long enough for them to get a reading. Is CPAP the only treatment? I'm so worried that I won't be able to sleep with that on. I won't find out what they plan until Dec. 22, which is the earliest they can get me in. Guess a lot of people are testing positive these days.> > I finally put down my foot & insisted to my pulmodoc that he refer me to pulmonary rehab somewhere even if he has to go outside the Kaiser group. Turns out Kaiser does have some kind of rehab program for COPD patients but nothing for PF patients. Since you all said something is better than nothing, I got him to refer me to that program, but the next session doesn't start until Feb or March.> > And Joyce, as for COPD vs PF, Bruce is absolutely correct. COPD can include all kinds of things, from chronic bronchitis to asthma to emphysema. Many people can live a fairly normal life with COPD for a long time. But it can also be terminal.> > Many people don't think of asthma too seriously, but people can actually die suddenly from an attack. As for emphysema, my best friend is in the last stages right now & not even expected to last until New Year's. But he's had it for at least 12 years & still been active on oxygen for half of that time. Apparently, they use lower levels though. He said his equipment can't even be turned higher than 5L while I know some of you have gone up to 10L at times.> > Don't think any of them are given 3-5 years left to live either, like us.> > Cees, S Calif> IPF/UIP 10/08> > > >> > Gita,> > Thanks! It's funny I didn't realize how stressed I was feeling about this appointment until it was over. I'm fortunate in that the doctor I see is very kind and easy to talk to. That alone makes the appointments much more pleasant!> >  > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >  > >  > > > > > > > > >

[Guest guest]

Roxanne

Always a good reminder that while PF'ers and COPD'ers share the general

problem of lungs and breathing and needing oxygen, the diseases are

completely different. Therefore, advice about either of the diseases can

be very wrong for the other. It would be extremely rare for a COPD

patient to need a higher flow than 5 lpm (Except during acute

exacerbation). In fact, there are some COPD doctors who feel like they

should never go above 3 lpm. Note I'm not saying they're the experts,

just that is a somewhat frequent statement. So to anyone if you're

talking to COPD'ers just always keep in mind that what's good for one

may be bad for the other. And if your doctor only has COPD patients then

run to find one who knows PF.

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> > Gita,

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> > Thanks! It's funny I didn't realize how stressed I was feeling about

this appointment until it was over. I'm fortunate in that theÂÂ

doctor I see is very kind and easy to talk to. That alone makes

the appointments much more pleasant!

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> > Beth

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> > Moderator

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> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

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