Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 Hi I would suggest you read Beth's note carefully and research another pulmonary specialist - the KEY being someone who is specializes and treats Interstitial Lung Disease (ILD), Fibrosis on a daily basis. My research seemed to proved many pulmonary docs treat COPD, Emphysema, Lung Cancer, etc. but that is not what you need. You might communicate with Jane, Joe & Joanie about the Emory Pulmonary dept. and support group. Certainly you should not staying home watching TV - just cannot believe any professional would say that to you. Dorothy Reinecke-Fayetteville, GA UIP 7/05 To: Breathe-Support Sent: Tuesday, September 22, 2009 11:32:56 AMSubject: Re: Soulliere I am actually in Kennesaw, I see Lock from the Ga. Lung ass. He said i would not be able to withstand a biopsy. <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: Dorothy Reinecke <atlantadorothy@ att.net>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 10:39:09 PMSubject: Re: Soulliere Hi , I also live in the Atlanta area - actually in Fayetteville about 15 miles south of Hartsfield. I was not able to find a pulmo doctor who specialized in ILD in Atlanta. After my lung biopsy the surgeon suggested that I look for a facility with ILD center/specialists. I went to Mass General in Boston and then was referred to Duke Medical in Durham.. It is a lot of traveling - but it has been worth it. It is 4 years since diagnosis and they have managed to keep progression pretty slow until the past six months. There are a few members of this board who go to the Pulmonary Clinic at Emory - they may be able to offer you some insight to the program there. May I ask who your pulmo doctor is in Atlanta? Did you have a lung biopsy yet? Dorothy Reinecke-Fayettevil le, GA 66-Dx 7/05 - UIP - Auto Immune Unknown From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 5:33:37 PMSubject: Re: Soulliere Beth, I live in Atlanta I did rehab here at the Georgia Lung Ass. It was more for people withCOPD but I loved it....... <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: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 4:57:14 PMSubject: Soulliere , 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 From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: 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...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 10l and 15l WOW and i was feeling sorry for myself.. <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> To: Breathe-Support Sent: Monday, September 21, 2009 8:05:02 PMSubject: Re: Soulliere ,I was on 10 lpm at rest and 15 lpm exertion but since starting pulmo rehab I have been able to lower my liter flow 1 - 2 liters. I am losing weight and feel soo much better going to rehab. I had to sit out for 2 weeks because of the fires here in California. When I went back I could tell that I had deconditioned (is that a word ?) But after working out for a couple of days I started feeling better again. MirandaLA/ 28 yrs oldIPF 05> >> > I'm new to this, little scared. My pulmonologist said my IPF was> getting worse, I'm already on oxygen 24/7. He told me not exert myself> and 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...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 ...how awful to be told that news. Although we've all been told similar dx but maybe not that short. Has doc since changed your mortality??? MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! (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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