Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Hi , Pulmonary rehab programs can vary tremendously from place to place. And I'm not at all familiar with rehab programs in Canada. That said, in general a decent pulmonary rehab program will include an overall fitness evaluation, cardiac stress test etc. Once that's done they will begin you on a program of aerobic exercise (treadmill and/or recumbant bicycle) while closely monitoring your O2 saturations. There is usually also a period of upper body strength training with light weights etc. Some programs have an educational component where there are classes on living with lung disease and information about various topics. Some of this information may be more geared toward COPD patients but much of it will still be very useful to us. Some programs contain more than this but these are the basics. It may not sound like a big deal but rehab is hugely helpful to almost anyone living with a lung disease. Just learning how we can exercise safely can make you more confident in your ability to carry on your daily activities. In addition the social aspect shouldn't be overlooked. I met people in rehab that I still keep in touch with more than 2 and a half years later. It was especially important to me during that time as I was feeling very overwhelmed and alone. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, March 5, 2009 1:34:38 PMSubject: Re: Pulmonary Rehab Can anyone let me know what this consists of?Windsor, Ontario CanadaDx 03/08 IPF Sent on the TELUS Mobility network with BlackBerry From: "Sher Bauman" Date: Thu, 5 Mar 2009 10:27:38 -0800To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: ILD/Pulm. Fibrosis  Peggy...speaking of teaching hospitals... I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept. We're not all that far from Seattle so I think I should do this too. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt (AT) yahoogroups (DOT) com, sparrow4@... wrote:>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Thank-you very much for the information.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Thu, 5 Mar 2009 10:53:24 -0800 (PST)To: <Breathe-Support >Subject: Re: Re: Pulmonary Rehab Hi ,Pulmonary rehab programs can vary tremendously from place to place. And I'm not at all familiar with rehab programs in Canada. That said, in general a decent pulmonary rehab program will include an overall fitness evaluation, cardiac stress test etc. Once that's done they will begin you on a program of aerobic exercise (treadmill and/or recumbant bicycle) while closely monitoring your O2 saturations. There is usually also a period of upper body strength training with light weights etc. Some programs have an educational component where there are classes on living with lung disease and information about various topics. Some of this information may be more geared toward COPD patients but much of it will still be very useful to us. Some programs contain more than this but these are the basics. It may not sound like a big deal but rehab is hugely helpful to almost anyone living with a lung disease. Just learning how we can exercise safely can make you more confident in your ability to carry on your daily activities. In addition the social aspect shouldn't be overlooked. I met people in rehab that I still keep in touch with more than 2 and a half years later. It was especially important to me during that time as I was feeling very overwhelmed and alone. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Thursday, March 5, 2009 1:34:38 PMSubject: Re: Pulmonary RehabCan anyone let me know what this consists of?Windsor, Ontario CanadaDx 03/08 IPFSent on the TELUS Mobility network with BlackBerryFrom: "Sher Bauman" Date: Thu, 5 Mar 2009 10:27:38 -0800To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: ILD/Pulm. Fibrosis Peggy...speaking of teaching hospitals... I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept.We're not all that far from Seattle so I think I should do this too.MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. FibrosisSunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.�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."� Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt (AT) yahoogroups (DOT) com, sparrow4@... wrote:>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009  ....there are so many variables that I can only be general....it's an Rx by your dr for prescribed exercises, breathing techniques, maybe stretching and/or weights, O2 or none. A certain time frame and you usually have the same RT each time that works w/you. A lot depends on what your ins. will or will not pay. I went 2x/wk for about 40 min. Weigh in each time...vitals taken each time... and then usually on the treadmill w/O2 for about 20 min. I couldn't do 20 min now but that is a general idea.... Then on to a bike type thing...can't remember the name now. You do what you can as long as you safely can. You are monitored very carefully. You may not do at all what I did and maybe it's totally different in Canada even. Best thing is to ask your dr. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote: Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009  ....there are so many variables that I can only be general....it's an Rx by your dr for prescribed exercises, breathing techniques, maybe stretching and/or weights, O2 or none. A certain time frame and you usually have the same RT each time that works w/you. A lot depends on what your ins. will or will not pay. I went 2x/wk for about 40 min. Weigh in each time...vitals taken each time... and then usually on the treadmill w/O2 for about 20 min. I couldn't do 20 min now but that is a general idea.... Then on to a bike type thing...can't remember the name now. You do what you can as long as you safely can. You are monitored very carefully. You may not do at all what I did and maybe it's totally different in Canada even. Best thing is to ask your dr. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote: Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Thank-you very much for the information.Sent on the TELUS Mobility network with BlackBerryFrom: "Sher Bauman" Date: Thu, 5 Mar 2009 10:58:50 -0800To: <Breathe-Support >Subject: Re: Re: Pulmonary Rehab  ....there are so many variables that I can only be general....it's an Rx by your dr for prescribed exercises, breathing techniques, maybe stretching and/or weights, O2 or none. A certain time frame and you usually have the same RT each time that works w/you.A lot depends on what your ins. will or will not pay.I went 2x/wk for about 40 min. Weigh in each time...vitals taken each time... and then usually on the treadmill w/O2 for about 20 min. I couldn't do 20 min now but that is a general idea....Then on to a bike type thing...can't remember the name now.You do what you can as long as you safely can. You are monitored very carefully.You may not do at all what I did and maybe it's totally different in Canada even.Best thing is to ask your dr. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote: Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Hi ,Had my first PR today, after an evaluation on Monday. The eval consists of lots of questions and two 6 minutewalks. Both of my walks were done with O2 since I desatin nothing flat (sats high 70s on room air after 50 foot walk). The routine in PR consists of upper body exercises, followedby treadmill, stationary bike, horizontal stair stepper. Sincethis was my first time I only got to go three minutes on eachmachine. Times will increase as my endurance improves. Twice a week for an hour, for 290 sessions, preapproved byinsurance. After that I may pay $35/month for maintenance,which I may do.It's all about the breathing...and pacing yourself.Peace, jon50, Missouri, Sarcoidosis 1/9-- Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, " I will try again tomorrow.” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Jon, does the PR program provide your oxygen while in the program? As far as I know, yes. I was taken off 'junior' (my conserver) and placed on wall O2. I'll ask next week about their policy...jon50, MO, sarc 1/9 -- Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, " I will try again tomorrow.” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 pulmonary rehab for me was a combination of classes, learning about lung diseases, meds, etc. and exercise--treadmill, weights, strength training Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Pulmonary RehabTo: Breathe-Support Date: Thursday, March 5, 2009, 1:34 PM Can anyone let me know what this consists of?Windsor, Ontario CanadaDx 03/08 IPF Sent on the TELUS Mobility network with BlackBerry From: "Sher Bauman" Date: Thu, 5 Mar 2009 10:27:38 -0800To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: ILD/Pulm. Fibrosis  Peggy...speaking of teaching hospitals... I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept. We're not all that far from Seattle so I think I should do this too. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt (AT) yahoogroups (DOT) com, sparrow4@... wrote:>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Did it help?Sent on the TELUS Mobility network with BlackBerryFrom: Joyce T Rosenberg Date: Thu, 5 Mar 2009 17:20:44 -0800 (PST)To: <Breathe-Support >Subject: Re: Re: Pulmonary Rehab pulmonary rehab for me was a combination of classes, learning about lung diseases, meds, etc. and exercise--treadmill, weights, strength training Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09www.transplantfund.org>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 if you are on the Yahoo site, click on options, then click on signature you can write your name, location, diagnosis etc and it will show up everytime you post Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Pulmonary RehabTo: Breathe-Support Date: Thursday, March 5, 2009, 2:02 PM Thank-you very much for the information. Sent on the TELUS Mobility network with BlackBerry From: "Sher Bauman" Date: Thu, 5 Mar 2009 10:58:50 -0800To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Pulmonary Rehab  ....there are so many variables that I can only be general....it' s an Rx by your dr for prescribed exercises, breathing techniques, maybe stretching and/or weights, O2 or none. A certain time frame and you usually have the same RT each time that works w/you. A lot depends on what your ins. will or will not pay. I went 2x/wk for about 40 min. Weigh in each time...vitals taken each time... and then usually on the treadmill w/O2 for about 20 min. I couldn't do 20 min now but that is a general idea.... Then on to a bike type thing...can' t remember the name now. You do what you can as long as you safely can. You are monitored very carefully. You may not do at all what I did and maybe it's totally different in Canada even. Best thing is to ask your dr. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt (AT) yahoogroups (DOT) com, sparrow4@... wrote:>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 if you are on the Yahoo site, click on options, then click on signature you can write your name, location, diagnosis etc and it will show up everytime you post Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Pulmonary RehabTo: Breathe-Support Date: Thursday, March 5, 2009, 2:02 PM Thank-you very much for the information. Sent on the TELUS Mobility network with BlackBerry From: "Sher Bauman" Date: Thu, 5 Mar 2009 10:58:50 -0800To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Pulmonary Rehab  ....there are so many variables that I can only be general....it' s an Rx by your dr for prescribed exercises, breathing techniques, maybe stretching and/or weights, O2 or none. A certain time frame and you usually have the same RT each time that works w/you. A lot depends on what your ins. will or will not pay. I went 2x/wk for about 40 min. Weigh in each time...vitals taken each time... and then usually on the treadmill w/O2 for about 20 min. I couldn't do 20 min now but that is a general idea.... Then on to a bike type thing...can' t remember the name now. You do what you can as long as you safely can. You are monitored very carefully. You may not do at all what I did and maybe it's totally different in Canada even. Best thing is to ask your dr. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. Fibrosis Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.� Love & Prayers, Peggy Florida, �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."� Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt (AT) yahoogroups (DOT) com, sparrow4@... wrote:>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Joyce,I am on my Blackberry. I have added my information with this response.Windsor, Ontario CanadaDx 03/08 IPFSent on the TELUS Mobility network with BlackBerryFrom: Joyce T Rosenberg Date: Thu, 5 Mar 2009 17:24:30 -0800 (PST)To: <Breathe-Support >Subject: Re: Re: Pulmonary Rehab if you are on the Yahoo site, click on options, then click on signatureyou can write your name, location, diagnosis etc and it will show up everytime you postPink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09www.transplantfund.org>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 the pulmonary rehab program that i was in provided O2. in fact that is when i started using it for exertion the maintenance program is less than $10 per session, and O2 is provided now i go to the wellness center in the same hospital. O2 is not provided. i set the marathon on continuous 4 when exercising the wellness center is $40 per month Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Pulmonary RehabTo: Breathe-Support Date: Thursday, March 5, 2009, 5:55 PM Jon, does the PR program provide your oxygen while in the program? Mine did for nine weeks but after that I had to provide my on and my marathon limit of 6lt did not allow for the quality of work out I needed to continue. I have tried to rig up my concentrator and marathon tank to give me more for my home treadmill. My near by gym is cheaper than the hospital but I usually get sick from going out to either. Best wishes for much improvement! Margaret 62 Anchorage, Alaska Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08 I enjoy traveling, photography, gardening, sewing, home decorating, playing with my toys & classical music aka Grammie Goose From: Gibson <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 5, 2009 1:20:31 PMSubject: Re: Re: Pulmonary Rehab Thank-you very much for the information. From: Jon Egger <revegger (AT) gmail (DOT) com>Subject: Re: Re: Pulmonary RehabTo: Breathe-Support@ yahoogroups. comDate: Thursday, March 5, 2009, 10:12 PM Hi ,Had my first PR today, after an evaluation on Monday. The eval consists of lots of questions and two 6 minutewalks. Both of my walks were done with O2 since I desatin nothing flat (sats high 70s on room air after 50 foot walk).The routine in PR consists of upper body exercises, followedby treadmill, stationary bike, horizontal stair stepper. Sincethis was my first time I only got to go three minutes on eachmachine. Times will increase as my endurance improves.Twice a week for an hour, for 290 sessions, preapproved byinsurance. After that I may pay $35/month for maintenance,which I may do.It's all about the breathing... and pacing yourself.Peace,jon50, Missouri, Sarcoidosis 1/9-- Courage doesn't always roar. Sometimes courageis the quiet voice at the end of the day saying, "I will try again tomorrow.†Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 yes it did help i learned alot about the lungs and the aviola (spelling is not correct), most of the class had COPD, but they did bring in a man with PF to meet me. He was there twice. The second time was the day he was listed, and then he was called 19 hours later. So i didn't see him at rehab anymore. not being and exercise person , i had to learn and do a lot when the RT first met me, she said one of the goals was 20 minutes on the treadmill i thought it would never happen, but it did that is the first thing i do whenever i go to rehab or the wellness center the treadmill is kind of boring, so I read while on it, sometimes i go longer than 20 minutes learned to do other types of exercise too i find that when i don't go to rehab for a period of time, i do decondition so it is important to go there is an explanation about the rest of the muscles needing less o2 by going to rehab, but my explanation is not accurate, even though i understand what i am trying to say Beth gives the best explanation for this Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Pulmonary RehabTo: Breathe-Support Date: Thursday, March 5, 2009, 8:23 PM Did it help? Sent on the TELUS Mobility network with BlackBerry From: Joyce T Rosenberg Date: Thu, 5 Mar 2009 17:20:44 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Pulmonary Rehab pulmonary rehab for me was a combination of classes, learning about lung diseases, meds, etc. and exercise--treadmill , weights, strength training Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund. org>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Thank you david btw Peggy, it was great talking to you too Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: Pulmonary RehabTo: Breathe-Support Date: Thursday, March 5, 2009, 8:29 PM Joyce,I am on my Blackberry. I have added my information with this response.Windsor, Ontario CanadaDx 03/08 IPF Sent on the TELUS Mobility network with BlackBerry From: Joyce T Rosenberg Date: Thu, 5 Mar 2009 17:24:30 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Pulmonary Rehab if you are on the Yahoo site, click on options, then click on signature you can write your name, location, diagnosis etc and it will show up everytime you post Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund. org>> Quoting "sunnypickel@ ..." <rpickel1@.. .>:>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy> Quote Link to comment Share on other sites More sharing options...
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