Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 rehab was fantastic........got some little clues, lite the purse breath.......you should go <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: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why.PatTo: Breathe-Support Sent: Sun, December 20, 2009 9:40:47 AMSubject: Re: about pulmonary rehab rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 My doctor has said nothing to me also. Wondering why not, But will ask at National Jewish when I go in Feb. I know I will find out more (I hope) about this s***** disease. I know I will feel better talking to someone who treats this on a daily bases and not maybe one or two people. Stay warm to all !!!!!!!!!!!!!!!To: Breathe-Support Sent: Sun, December 20, 2009 9:45:00 AMSubject: Re: about pulmonary rehab I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why.PatFrom: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:40:47 AMSubject: Re: about pulmonary rehab rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 thanks , I start on Tuesday.To: Breathe-Support Sent: Sun, December 20, 2009 10:40:47 AMSubject: Re: about pulmonary rehab rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups.. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Pat,Call the pulmonary rehab near you and they will help you set it up.To: Breathe-Support Sent: Sun, December 20, 2009 10:45:00 AMSubject: Re: about pulmonary rehab I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why.PatFrom: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:40:47 AMSubject: Re: about pulmonary rehab rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups.. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 ,Because I hadn't heard anything after my pulmo Dr. told me to do it I called the rehab myself and the nurse got it going within 2 days.Of course, I changed dr's becasue the pulmo doc. didn't follow through with anything.To: Breathe-Support Sent: Sun, December 20, 2009 10:52:19 AMSubject: Re: about pulmonary rehab My doctor has said nothing to me also. Wondering why not, But will ask at National Jewish when I go in Feb. I know I will find out more (I hope) about this s***** disease. I know I will feel better talking to someone who treats this on a daily bases and not maybe one or two people. Stay warm to all !!!!!!!!!!!! !!!From: Fracol <fracolpatricia@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:45:00 AMSubject: Re: about pulmonary rehab I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why.PatFrom: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:40:47 AMSubject: Re: about pulmonary rehab rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr.org/Resources/SearchableCertifiedProgramDirectory/tabid/113/Default.aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Congrats, Beth! B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Counting my blessings: #5 - Working electricity. To: Breathe-Support Sent: Sun, December 20, 2009 11:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Pulmonary Rehab should be prescribed for every PF'er. It is a huge benefit and I rarely see anyone who says they didn't benefit. It is standard treatment for the disease and a terrible omission not to be prescribed as one finds themselves low on oxygen. You can use what you learn for the rest of your life. It doesn't cure anything but it does significantly improve quality of life through keeping the rest of your body in better condition and in helping with your breathing habits. > > I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why. > > Pat > > > > ________________________________ > From: Soulliere johnsbatik@... > To: Breathe-Support > Sent: Sun, December 20, 2009 9:40:47 AM > Subject: Re: about pulmonary rehab > > > rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go > > > > > > <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: iltopaint iltopaint (AT) yahoo (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Sun, December 20, 2009 9:57:52 AM > Subject: about pulmonary rehab > > > Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 As you should....I've gotten over the thought that Drs are gods.... PF 01/05 diabetis forgver, pagents disease 75 To: Breathe-Support Sent: Sun, December 20, 2009 11:02:45 AMSubject: Re: about pulmonary rehab ,Because I hadn't heard anything after my pulmo Dr. told me to do it I called the rehab myself and the nurse got it going within 2 days.Of course, I changed dr's becasue the pulmo doc. didn't follow through with anything. From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:52:19 AMSubject: Re: about pulmonary rehab My doctor has said nothing to me also. Wondering why not, But will ask at National Jewish when I go in Feb. I know I will find out more (I hope) about this s***** disease. I know I will feel better talking to someone who treats this on a daily bases and not maybe one or two people. Stay warm to all !!!!!!!!!!!! !!! From: Fracol <fracolpatricia@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:45:00 AMSubject: Re: about pulmonary rehab I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why. Pat From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:40:47 AMSubject: Re: about pulmonary rehab rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of yearTo: Breathe-Support Sent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 thanks Bruce. I am looking forward to next weekTo: Breathe-Support Sent: Sun, December 20, 2009 11:17:14 AMSubject: Re: about pulmonary rehab Pulmonary Rehab should be prescribed for every PF'er. It is a huge benefit and I rarely see anyone who says they didn't benefit. It is standard treatment for the disease and a terrible omission not to be prescribed as one finds themselves low on oxygen. You can use what you learn for the rest of your life. It doesn't cure anything but it does significantly improve quality of life through keeping the rest of your body in better condition and in helping with your breathing habits. > > I haven't had pulmonary rehab - my Dr. said nothing about it. I wonder why. > > Pat > > > > ____________ _________ _________ __ > From: Soulliere johnsbatik@. ... > To: Breathe-Support@ yahoogroups. com > Sent: Sun, December 20, 2009 9:40:47 AM > Subject: Re: about pulmonary rehab > > > rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go > > > > > > <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: iltopaint iltopaint (AT) yahoo (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Sun, December 20, 2009 9:57:52 AM > Subject: about pulmonary rehab > > > Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 I totally understand that there are many programs out there. They do have one here in Huron where I live but I think it is mainly for the heart. Gascoigne SD, 50 yrs old, IPF 7/2009 To: Breathe-Support Sent: Sun, December 20, 2009 10:38:38 AMSubject: Re: about pulmonary rehab , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Hi , If you're talking about Huron Regional Medical Center, their website says they have a 6 week pulmonary rehab program separate and distinct from their cardiac rehab. Here is the link to what I found. http://www.huronregional.org/services/index.php?id=24 & parentid=13#pulmonary You might want to give them a call. It sounds like a decent program though keep in mind they are probably not going to be as familiar with pulmonary fibrosis as they are with COPD and emphysema. Even given that you will likely still find much of value. Hope that helps! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, December 20, 2009 11:44:31 AMSubject: Re: about pulmonary rehab I totally understand that there are many programs out there. They do have one here in Huron where I live but I think it is mainly for the heart. Gascoigne SD, 50 yrs old, IPF 7/2009 From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:38:38 AMSubject: Re: about pulmonary rehab , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 I think its essential for all of us to go through rehab. They design the program for each individuals capabilities. You learn what your limits are in a controlled environment and they make sure you don't hurt yourself. Afterwords, you can continue at home or join a club to keep yourself in shape. Also, in the one I was in they had one hour class each week to learn about living with the disease. In my class, the only problem was, the class was designed mostly for COPD and much of the information did not pertain to IPF patients. I recommend every one to go, It can't hurt, and may extend your ability to physically cope with this disease better at each stage. Bob 70, IPF 1/09 5 bypasses 7/01 Subject: Re: about pulmonary rehabTo: Breathe-Support Date: Sunday, December 20, 2009, 10:40 AM rehab was fantastic... .....got some little clues, lite the purse breath...... .you should go <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: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 the pul rehab dept was no longer convinent for me, so i go to the "gym" in the same hospital if i miss too many days, i get very sluggish then i have a tough time getting back to where I was before i stopped going it's been over a week now, not sure when i'll go back as soon as i feel well, i will return might have to start out slowly again Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: about pulmonary rehabTo: Breathe-Support Date: Sunday, December 20, 2009, 11:38 AM , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Even though most of the people in pulmonary rehab were COPD, the RT's were very aware of the issues with pulmonary fibrosis and would address my needs they even invited a man with pf who had been through the program to meet me, he was in bad shape at that time the second time i met him, he was listed and was called 19 hours later Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: about pulmonary rehabTo: Breathe-Support Date: Sunday, December 20, 2009, 12:03 PM Hi , If you're talking about Huron Regional Medical Center, their website says they have a 6 week pulmonary rehab program separate and distinct from their cardiac rehab. Here is the link to what I found. http://www.huronreg ional.org/ services/ index.php? id=24 & parentid=13# pulmonary You might want to give them a call. It sounds like a decent program though keep in mind they are probably not going to be as familiar with pulmonary fibrosis as they are with COPD and emphysema. Even given that you will likely still find much of value. Hope that helps! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:44:31 AMSubject: Re: about pulmonary rehab I totally understand that there are many programs out there. They do have one here in Huron where I live but I think it is mainly for the heart. Gascoigne SD, 50 yrs old, IPF 7/2009 From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:38:38 AMSubject: Re: about pulmonary rehab , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Pink you take care of yourself....I still want to go out dancing with you. PF 01/05 diabetis forever, pagents disease 75 68yo To: Breathe-Support Sent: Sun, December 20, 2009 12:37:14 PMSubject: Re: about pulmonary rehab the pul rehab dept was no longer convinent for me, so i go to the "gym" in the same hospital if i miss too many days, i get very sluggish then i have a tough time getting back to where I was before i stopped going it's been over a week now, not sure when i'll go back as soon as i feel well, i will return might have to start out slowly again Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: about pulmonary rehabTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 20, 2009, 11:38 AM , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Yes it made a very big difference, I feel much stronger and can do a lot more stuff than before. I did it to make myself strong enough for a transplant, but I would do it anyway. I exercise every day. I really feel so much better. I am on oxygen 24/7 I just move it up to as high as I need to stay above 90% at all times. Carroll 3/09 IPFHi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 I agree whole-heartedly!!!! I have completed pulmonary rehab (which is also required by the transplant program at Brigham & Women's Hospital in Boston) and attend their pulmonary maintenance class twice a week. This even though the nearest program to me is 45 miles away. For over a year now, I have driven the 90 mile round trip 2-3 times a week...it is that important!!! Steve...aka Knip IPF 9/07 VATS 12/07 activated on lung transplant list 10/19/09 58 Plymouth, NH > > > > I haven't had pulmonary rehab - my Dr. said nothing about it. I > wonder why. > > > > Pat > > > > > > > > ________________________________ > > From: Soulliere johnsbatik@ > > To: Breathe-Support > > Sent: Sun, December 20, 2009 9:40:47 AM > > Subject: Re: about pulmonary rehab > > > > > > rehab was fantastic... .....got some little clues, lite the purse > breath...... .you should go > > > > > > > > > > > > <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: iltopaint iltopaint (AT) yahoo (DOT) com> > > To: Breathe-Support@ yahoogroups. com > > Sent: Sun, December 20, 2009 9:57:52 AM > > Subject: about pulmonary rehab > > > > > > Hi everyone, I'm looking to see what everyone thought of pulmonary > rehab. What did it do for you and did it really make a difference in > your everyday life. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 I agree whole-heartedly!!!! I have completed pulmonary rehab (which is also required by the transplant program at Brigham & Women's Hospital in Boston) and attend their pulmonary maintenance class twice a week. This even though the nearest program to me is 45 miles away. For over a year now, I have driven the 90 mile round trip 2-3 times a week...it is that important!!! Steve...aka Knip IPF 9/07 VATS 12/07 activated on lung transplant list 10/19/09 58 Plymouth, NH > > > > I haven't had pulmonary rehab - my Dr. said nothing about it. I > wonder why. > > > > Pat > > > > > > > > ________________________________ > > From: Soulliere johnsbatik@ > > To: Breathe-Support > > Sent: Sun, December 20, 2009 9:40:47 AM > > Subject: Re: about pulmonary rehab > > > > > > rehab was fantastic... .....got some little clues, lite the purse > breath...... .you should go > > > > > > > > > > > > <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: iltopaint iltopaint (AT) yahoo (DOT) com> > > To: Breathe-Support@ yahoogroups. com > > Sent: Sun, December 20, 2009 9:57:52 AM > > Subject: about pulmonary rehab > > > > > > Hi everyone, I'm looking to see what everyone thought of pulmonary > rehab. What did it do for you and did it really make a difference in > your everyday life. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 sounds like fun Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: about pulmonary rehabTo: Breathe-Support Date: Sunday, December 20, 2009, 12:47 PM Pink you take care of yourself.... I still want to go out dancing with you. PF 01/05 diabetis forever, pagents disease 75 68yo From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 12:37:14 PMSubject: Re: about pulmonary rehab the pul rehab dept was no longer convinent for me, so i go to the "gym" in the same hospital if i miss too many days, i get very sluggish then i have a tough time getting back to where I was before i stopped going it's been over a week now, not sure when i'll go back as soon as i feel well, i will return might have to start out slowly again Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: about pulmonary rehabTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 20, 2009, 11:38 AM , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Thanks Beth. they do mainly deal with COPD and emphysema. May have to go and educate them on Pulmonary fibrosis!!! HA HA Gascoigne SD, 50 yrs old, IPF 7/2009To: Breathe-Support Sent: Sun, December 20, 2009 11:03:42 AMSubject: Re: about pulmonary rehab Hi , If you're talking about Huron Regional Medical Center, their website says they have a 6 week pulmonary rehab program separate and distinct from their cardiac rehab. Here is the link to what I found. http://www.huronreg ional.org/ services/ index.php? id=24 & parentid=13# pulmonary You might want to give them a call. It sounds like a decent program though keep in mind they are probably not going to be as familiar with pulmonary fibrosis as they are with COPD and emphysema. Even given that you will likely still find much of value. Hope that helps! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:44:31 AMSubject: Re: about pulmonary rehab I totally understand that there are many programs out there. They do have one here in Huron where I live but I think it is mainly for the heart. Gascoigne SD, 50 yrs old, IPF 7/2009 From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:38:38 AMSubject: Re: about pulmonary rehab , That directory is by no means comprehensive. There are many programs that aren't listed in there at all. It's only a single resource. Besides asking your physician, you can also call local hospitals ask for the respiratory therapy department and ask then if they have a program at the hospital. There are many programs out there, some fairly simple and no frills others more comprehensive. Virtually any program is going to help and make a positive difference for us. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 11:23:47 AMSubject: Re: about pulmonary rehab Thanks Beth for the info. The nearist one for me is 90 miles away will look into that after 1st of year From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 10:11:30 AMSubject: Re: about pulmonary rehab Good morning, In my opinion pulmonary rehab is the single best thing most of us can do for ourselves. There are hundreds and hundreds of programs across the country. Some of them are better and more comprehensive than others but almost all of them are better than nothing. You will learn more about your disease and how to manage it. Learn how to exert yourself and exercise safely. Personally I have been through rehab twice. Once in NY at Helen Hospital in 2006 and most recently here in NC at the Duke Center for Living. This time around I've been able to lose 27 pounds to date and my 6 minute walk distance increased by 25%. I am stronger and have more endurance than I did when I started. Here is a link to a searchable directory of programs from the American Association of Cardiovascular and Pulmonary Rehabilitation: http://www.aacvpr. org/Resources/ SearchableCertif iedProgramDirect ory/tabid/ 113/Default. aspx You need a doctors prescription to be able to go to a rehab program but many doctors don't think to suggest it or don't see the value. However in many places (Duke is one of them) rehab is required for transplant. It just makes sense to try to keep our bodies as healthy as possible in order to be able to live as best we can with this lung disease. If your doctor doesn't suggest it you can and should request it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 20, 2009 9:57:52 AMSubject: about pulmonary rehab Hi everyone, I'm looking to see what everyone thought of pulmonary rehab. What did it do for you and did it really make a difference in your everyday life. Quote Link to comment Share on other sites More sharing options...
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