Patients have a vested, personal interest in taking charge of their own health.
Our doctors help us medically but they cannot teach us how to live with whatever we have.
They cannot tell us to ignore shortness of breath – to exercise through it to achieve a quality of life we can feel slipping away.

Active, forward, informative patient support groups can and do inform and educate to give us the choice between living a quality life and just existing.

I am not on oxygen, but many lung patients are. The following is taken verbatim from the online support and advocacy group that taught what no one else was teaching – what COPD patients can do to help ourselves.

I have permission to use the following…

Mark Mangus, RRT and active educator on EFFORTS (www.emphysema.net) is one RRT who thinks outside the box.
(Harrison Medical Center has one to tell you about another time)

The following comments are on oxygen use.

Mark is responding to Tommie, an oxygen patient commenting on a previous post from Mark:
.
… they can be up to date on most everything else and still be misinformed on this matter.

It took years to become what it is today…it will take years to reverse and eliminate it…. this myth pervades across several professional lines, so it is a multi-focal,multi-front problem…

Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC
Pulmonary Rehabilitation Coordinator
Christus Santa Rosa, Medical Center
San Antonio, TX
mark.mangus@christushealth.org

Responses reflect my positions and opinions alone and do not necessarily represent the positions or opinions of Christus Santa Rosa Health Care.
…
Sent: Tuesday, July 14, 2009 3:09 PM
To: EFFORTS@EFFORTSLIST.ORG
Subject: [EFFORTS] Old School Thinking

Mark’s quote:

“But, they are likely stuck in the school of those who still believe that using too much oxygen can decrease your drive to breathe and cause you to stop breathing – – – the “myth” I’ve discussed so many times over the years.”

****
> I had my PCP tell me this very thing last Thursday! That if I turn my 02 up too high, my body would think I had too much 02 and my brain would send a signal telling it not to breathe!!
I had always thought he was very up to date … I’ve also had 02 suppliers say the same thing.
Too bad, we can’t get rid of this “old school thinking”. …
If your PCP has told you the same thing, please discuss this with him/her.

Thank you EFFORTS, Mark, Tommie.
Sharon O’Hara