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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>

To: Breathe-Support Sent: 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>

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,

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.

Miranda

LA/ 28 yrs old

IPF 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

> >

>

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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-Fayetteville, GA

66-Dx 7/05 - UIP - Auto Immune Unknown

To: Breathe-Support Sent: 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>

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Yes, I go to the ILD Clinic at Emory in Atlanta. I have an appointment there on Friday for PFTs, see the doctor, and do the stuff I do for the study I am in. (Joe/Joanie: I am going to ask why she hasn't been there for you to participate as she was suppose to do) Since my doctor has moved, I am going to see Dr. Kershaw. He has been well-trained by Dr. & Dr. Roman and he is young. Plus, we have a growing support group. The advantage of this group is that the doctors always come to the meeting and talk and we ask questions. And we meet people like us. Any questions? We're here. Joe & Joanie also go to Emory.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > 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> >>

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Jo Jane, Hope you got the Arc done. We saw all the flooding last night in the news. I hope Joe and Joanie are high and dry.Let us know y'all that live so. of Atlanta if your ok. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Yes, I go to the ILD Clinic at Emory in Atlanta. I have an appointment there on Friday for PFTs, see the doctor, and do the stuff I do for the study I am in. (Joe/Joanie: I am going to ask why she hasn't been there for you to participate as she was suppose to do) Since my doctor has moved, I am going to see Dr. Kershaw. He has been well-trained by Dr. & Dr. Roman and he is young. Plus, we have a growing support group. The advantage of this group is that the doctors always come to the meeting and talk and we ask questions. And we meet people like us. Any questions? We're here. Joe & Joanie also go to Emory. Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > 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> >>

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Thanks for the encouragement

<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> >>

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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>

To: Breathe-Support Sent: 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>

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Joe and Jonie...thanks for the info...I told someone at Emory last time I was there to let me know if they had a study for ipf, and let me know...I'm in Kennesaw the Emory is quite a haul for me.

<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 11:47:01 PMSubject: Re: Soulliere

Yes, I go to the ILD Clinic at Emory in Atlanta. I have an appointment there on Friday for PFTs, see the doctor, and do the stuff I do for the study I am in. (Joe/Joanie: I am going to ask why she hasn't been there for you to participate as she was suppose to do) Since my doctor has moved, I am going to see Dr. Kershaw. He has been well-trained by Dr. & Dr. Roman and he is young. Plus, we have a growing support group. The advantage of this group is that the doctors always come to the meeting and talk and we ask questions. And we meet people like us. Any questions? We're here. Joe & Joanie also go to Emory.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > 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> >>

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Thanks Dorthy, This Dr. also told me when I first went to him that I had 3 to 6 months to live. The steroids he put me on worked. But the two weeks I had with the knowledge that I was gonna die......was not pleasant

<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: Tuesday, September 22, 2009 12:10:15 PMSubject: Re: Soulliere

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-Fayettevil le, GA

UIP 7/05

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: 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>

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I also go to Emory - Dr. Staton. I live in Waynesville, NC.

B

To: Breathe-Support Sent: Tuesday, September 22, 2009 4:46:49 PMSubject: Re: Re: Soulliere

Joe and Jonie...thanks for the info...I told someone at Emory last time I was there to let me know if they had a study for ipf, and let me know...I'm in Kennesaw the Emory is quite a haul for me.

<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: pianolady_musicgirl <jjarrett (AT) optilink (DOT) us>To: Breathe-Support@ yahoogroups. comSent: Monday, September 21, 2009 11:47:01 PMSubject: Re: Soulliere

Yes, I go to the ILD Clinic at Emory in Atlanta. I have an appointment there on Friday for PFTs, see the doctor, and do the stuff I do for the study I am in. (Joe/Joanie: I am going to ask why she hasn't been there for you to participate as she was suppose to do) Since my doctor has moved, I am going to see Dr. Kershaw. He has been well-trained by Dr. & Dr. Roman and he is young. Plus, we have a growing support group. The advantage of this group is that the doctors always come to the meeting and talk and we ask questions. And we meet people like us. Any questions? We're here. Joe & Joanie also go to Emory.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > 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> >>

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, if you want to join a study for pulmonary fibrosis you are going to have to go where those studies are done. I am finishing another study on Friday that I have been in for a year. If you have any questions, we're here for you. Take care

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady+musicgirl> >> > 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> >>

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