Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 , Welcome to Breathe Support. I'm glad you are here! I have to tell you though in my humble opinion your pulmonologist's advice is, to be blunt, dangerous. I use the same amount of oxygen that you do and I am enrolled in a strenuous pulmonary rehab program at Duke in North Carolina. Now you have an additional issue with your leg but the idea that your doctor told you to sit and watch tv makes me ill. Has he never heard of physical therapy? Pulmonary rehab? My advice would be to find a new pulmonologist asap. I don't know where you live but if you go to www.ipfnet.org you will find a map with 22 "centers of excellence" with departments that specialize in interstitial lung disease. If you can't get to one of these start calling around to find the closest university medical center that has specialists in ILD. The sorry truth is we have to look out for our own best interests. The doctors don't always do that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, September 21, 2009 3:22:49 PMSubject: Re: (unknown) Bruce thanks, I'm on 2 or 3 liters when at rest, and 4 when I walk....I also have a damaged leg due to a broken neck this takes a lot of the expenditure <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT> From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 2:55:24 PMSubject: (unknown) Unless you're already up to very high levels of oxygen, your doctor'sadvise sounds insane. Get a new doctor at an ILD center, such as one ofthe IPF Centers of Excellence. You should probably be doing the oppositeand attending pulmonary rehab.. But this is not a lie there and wait todie disease until its much worse that I imagine yours is. Again, notknowing your levels of oxygen hard to say. But the face you want to bedoing things and feel capable tells me you probably can and should.>> I'm new to this, little scared. My pulmonologist said my IPF wasgetting worse, I'm already on oxygen 24/7. He told me not exert myselfand just watch TV. This really pissed me off.> I'm not the type of person to just lye there and wait to die.> I'm thinking of getting a second opinion and a NEW Dr.> Any suggestions? ? JOHN> Quote Link to comment Share on other sites More sharing options...
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