Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi MB & All, I had an experience yesterday and thought I would run it by y'all to see if this has happened to anyone. I was out on my porch for about 10 or so minutes, It was just so hot it was hard to breathe. I came back in and could hardly breathe, my chest felt like a truck hit me HARD. I think it was the temp. change. ??? anyone else this happened to? We have been 98, 99 degrees for over three weeks. On the way home from 's sister the other day the ext. temp. on the car at 65 MPH was 109.. you know that is just TOOOOOOOOO hot. I won't be making bible covers unless it's early in the AM. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Sue,Try not to get too down because you've had a few cruddy days. The heat we've been having is brutal and I'm sure your air quality in VA isn't any better than ours here in NC when we have a stationary front like we do now. This kind of stuff can wreak havoc with our breathing. Just go slow and don't panic. I hate when doctors circumstances change and we have to make adjustments. I go to Duke also, it's actually practically in my backyard. LOL Only about 4 miles from my house to the clinc building where I see Dr. on. I'm sure whoever you choose at Duke will be fine. My only advice would be make sure the doctor you choose is a specialist in interstitial lung diseases as opposed to a general pulmonologist or a specialist in some other type of lung disease. You can get some info about the doctors their educations, background and areas of expertise at this website. http://www.dukehealth.org/physicians Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Back up oxygen systemsThanks guys for your responses. To answer some of your questions –MB: the cart is not made of platinum with mink tips (too bad) in fact, the wheels are well worn and the screw that holds the cylinder is almost stripped. When I said Pulmonaryrehab, I actually meant a cardiac and pulmonary maintenance program at the local wellness center. When I went through the hospital approved program, they supplied the o2. I am on 4 liters at rest, but I find 3 is OK too, but I’m on 6-8 on exertion. When I’m exercising, I also have to use a rebreather mask which I hate to keep the o2 levels up. I am going to take Bruce’s advice and “diplomatically” inquire of the o2 supplier about the cost of the cart rental. I guess what really got me to thinking about this, is that I got a bill for over $200 which covered several months. It’s much easier to pay a smaller amount each month than be hit with a whopper of a bill. I have my 3-month check up coming in a week and I guess I’m nervous about that. I just have this gnawing feeling that the disease has progressed. When you have a few bad days, you can’t help but think it’s the disease, but it could be the weather or meds too. I have been going to Duke for my care, and was told that my dr. is going to be taking over the medical aspects of the transplant program and has to give up his fibrosis patients. I’ve heard a couple of you mention Dr. on and a dr. friend also suggested a Dr. Govert. I will see who Dr. Steele recommends and go from there. Thanks for your suggestions.Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi MB & All, I had an experience yesterday and thought I would run it by y'all to see if this has happened to anyone. I was out on my porch for about 10 or so minutes, It was just so hot it was hard to breathe. I came back in and could hardly breathe, my chest felt like a truck hit me HARD. I think it was the temp. change. ??? anyone else this happened to? We have been 98, 99 degrees for over three weeks. On the way home from 's sister the other day the ext. temp. on the car at 65 MPH was 109.. you know that is just TOOOOOOOOO hot. I won't be making bible covers unless it's early in the AM. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Sue,Try not to get too down because you've had a few cruddy days. The heat we've been having is brutal and I'm sure your air quality in VA isn't any better than ours here in NC when we have a stationary front like we do now. This kind of stuff can wreak havoc with our breathing. Just go slow and don't panic. I hate when doctors circumstances change and we have to make adjustments. I go to Duke also, it's actually practically in my backyard. LOL Only about 4 miles from my house to the clinc building where I see Dr. on. I'm sure whoever you choose at Duke will be fine. My only advice would be make sure the doctor you choose is a specialist in interstitial lung diseases as opposed to a general pulmonologist or a specialist in some other type of lung disease. You can get some info about the doctors their educations, background and areas of expertise at this website. http://www.dukehealth.org/physicians Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Back up oxygen systemsThanks guys for your responses. To answer some of your questions –MB: the cart is not made of platinum with mink tips (too bad) in fact, the wheels are well worn and the screw that holds the cylinder is almost stripped. When I said Pulmonaryrehab, I actually meant a cardiac and pulmonary maintenance program at the local wellness center. When I went through the hospital approved program, they supplied the o2. I am on 4 liters at rest, but I find 3 is OK too, but I’m on 6-8 on exertion. When I’m exercising, I also have to use a rebreather mask which I hate to keep the o2 levels up. I am going to take Bruce’s advice and “diplomatically” inquire of the o2 supplier about the cost of the cart rental. I guess what really got me to thinking about this, is that I got a bill for over $200 which covered several months. It’s much easier to pay a smaller amount each month than be hit with a whopper of a bill. I have my 3-month check up coming in a week and I guess I’m nervous about that. I just have this gnawing feeling that the disease has progressed. When you have a few bad days, you can’t help but think it’s the disease, but it could be the weather or meds too. I have been going to Duke for my care, and was told that my dr. is going to be taking over the medical aspects of the transplant program and has to give up his fibrosis patients. I’ve heard a couple of you mention Dr. on and a dr. friend also suggested a Dr. Govert. I will see who Dr. Steele recommends and go from there. Thanks for your suggestions.Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi MB & All, I had an experience yesterday and thought I would run it by y'all to see if this has happened to anyone. I was out on my porch for about 10 or so minutes, It was just so hot it was hard to breathe. I came back in and could hardly breathe, my chest felt like a truck hit me HARD. I think it was the temp. change. ??? anyone else this happened to? We have been 98, 99 degrees for over three weeks. On the way home from 's sister the other day the ext. temp. on the car at 65 MPH was 109.. you know that is just TOOOOOOOOO hot. I won't be making bible covers unless it's early in the AM. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Sue,Try not to get too down because you've had a few cruddy days. The heat we've been having is brutal and I'm sure your air quality in VA isn't any better than ours here in NC when we have a stationary front like we do now. This kind of stuff can wreak havoc with our breathing. Just go slow and don't panic. I hate when doctors circumstances change and we have to make adjustments. I go to Duke also, it's actually practically in my backyard. LOL Only about 4 miles from my house to the clinc building where I see Dr. on. I'm sure whoever you choose at Duke will be fine. My only advice would be make sure the doctor you choose is a specialist in interstitial lung diseases as opposed to a general pulmonologist or a specialist in some other type of lung disease. You can get some info about the doctors their educations, background and areas of expertise at this website. http://www.dukehealth.org/physicians Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Back up oxygen systemsThanks guys for your responses. To answer some of your questions –MB: the cart is not made of platinum with mink tips (too bad) in fact, the wheels are well worn and the screw that holds the cylinder is almost stripped. When I said Pulmonaryrehab, I actually meant a cardiac and pulmonary maintenance program at the local wellness center. When I went through the hospital approved program, they supplied the o2. I am on 4 liters at rest, but I find 3 is OK too, but I’m on 6-8 on exertion. When I’m exercising, I also have to use a rebreather mask which I hate to keep the o2 levels up. I am going to take Bruce’s advice and “diplomatically” inquire of the o2 supplier about the cost of the cart rental. I guess what really got me to thinking about this, is that I got a bill for over $200 which covered several months. It’s much easier to pay a smaller amount each month than be hit with a whopper of a bill. I have my 3-month check up coming in a week and I guess I’m nervous about that. I just have this gnawing feeling that the disease has progressed. When you have a few bad days, you can’t help but think it’s the disease, but it could be the weather or meds too. I have been going to Duke for my care, and was told that my dr. is going to be taking over the medical aspects of the transplant program and has to give up his fibrosis patients. I’ve heard a couple of you mention Dr. on and a dr. friend also suggested a Dr. Govert. I will see who Dr. Steele recommends and go from there. Thanks for your suggestions.Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Peggy. Yes I can tell immediately when there is a pressure and related heat change. It feels like an elephant sitting on my chest. Sometimes it can last for hours then it passes. It has been 100 or so here for the last week and yesterday it cooled off a little. The wind has been blowing 30+ with dust everywhere. Tomorrow blessedly it is only 82. S > > > Sue, > > Try not to get too down because you've had a few cruddy days. The > heat we've been having is brutal and I'm sure your air quality in VA > isn't any better than ours here in NC when we have a stationary front > like we do now. This kind of stuff can wreak havoc with our > breathing. Just go slow and don't panic. > > > I hate when doctors circumstances change and we have to make > adjustments. I go to Duke also, it's actually practically in my > backyard. LOL Only about 4 miles from my house to the clinc building > where I see Dr. on. I'm sure whoever you choose at Duke will be > fine. My only advice would be make sure the doctor you choose is a > specialist in interstitial lung diseases as opposed to a general > pulmonologist or a specialist in some other type of lung disease. You > can get some info about the doctors their educations, background and > areas of expertise at this website. http://www.dukehealth.org/physicians > > > Hope that helps! > > > > > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > Re: Back up oxygen systems > > > Thanks guys for your responses. To answer some of your questions – > MB: the cart is not made of platinum with mink tips (too bad) in > fact, the wheels are well worn and the screw that holds the cylinder > is almost stripped. When I said Pulmonary > > rehab, I actually meant a cardiac and pulmonary maintenance program > at the local wellness center. When I went through the hospital > approved program, they supplied the o2. I am on 4 liters at rest, > but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm > exercising, I also have to use a rebreather mask which I hate to keep > the o2 levels up. > > I am going to take Bruce's advice and > " diplomatically " inquire of the o2 supplier about the cost of the > cart rental. I guess what really got me to thinking about > this, is that I got a bill for over $200 which covered several > months. It's much easier to pay a smaller amount each month than > be hit with a whopper of a bill. > > I have my 3-month check up coming in a week and I > guess I'm nervous about that. I just have this gnawing feeling > that the disease has progressed. When you have a few bad days, > you can't help but think it's the disease, but it could be the > weather or meds too. I have been going to Duke for my care, and > was told that my dr. is going to be taking over the medical aspects > of the transplant program and has to give up his fibrosis > patients. I've heard a couple of you mention Dr. on and a > dr. friend also suggested a Dr. Govert. I will see who Dr. Steele > recommends and go from there. > > Thanks for your suggestions. > > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Peggy. Yes I can tell immediately when there is a pressure and related heat change. It feels like an elephant sitting on my chest. Sometimes it can last for hours then it passes. It has been 100 or so here for the last week and yesterday it cooled off a little. The wind has been blowing 30+ with dust everywhere. Tomorrow blessedly it is only 82. S > > > Sue, > > Try not to get too down because you've had a few cruddy days. The > heat we've been having is brutal and I'm sure your air quality in VA > isn't any better than ours here in NC when we have a stationary front > like we do now. This kind of stuff can wreak havoc with our > breathing. Just go slow and don't panic. > > > I hate when doctors circumstances change and we have to make > adjustments. I go to Duke also, it's actually practically in my > backyard. LOL Only about 4 miles from my house to the clinc building > where I see Dr. on. I'm sure whoever you choose at Duke will be > fine. My only advice would be make sure the doctor you choose is a > specialist in interstitial lung diseases as opposed to a general > pulmonologist or a specialist in some other type of lung disease. You > can get some info about the doctors their educations, background and > areas of expertise at this website. http://www.dukehealth.org/physicians > > > Hope that helps! > > > > > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > Re: Back up oxygen systems > > > Thanks guys for your responses. To answer some of your questions – > MB: the cart is not made of platinum with mink tips (too bad) in > fact, the wheels are well worn and the screw that holds the cylinder > is almost stripped. When I said Pulmonary > > rehab, I actually meant a cardiac and pulmonary maintenance program > at the local wellness center. When I went through the hospital > approved program, they supplied the o2. I am on 4 liters at rest, > but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm > exercising, I also have to use a rebreather mask which I hate to keep > the o2 levels up. > > I am going to take Bruce's advice and > " diplomatically " inquire of the o2 supplier about the cost of the > cart rental. I guess what really got me to thinking about > this, is that I got a bill for over $200 which covered several > months. It's much easier to pay a smaller amount each month than > be hit with a whopper of a bill. > > I have my 3-month check up coming in a week and I > guess I'm nervous about that. I just have this gnawing feeling > that the disease has progressed. When you have a few bad days, > you can't help but think it's the disease, but it could be the > weather or meds too. I have been going to Duke for my care, and > was told that my dr. is going to be taking over the medical aspects > of the transplant program and has to give up his fibrosis > patients. I've heard a couple of you mention Dr. on and a > dr. friend also suggested a Dr. Govert. I will see who Dr. Steele > recommends and go from there. > > Thanks for your suggestions. > > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 One thing I have to remind myself sometimes is that there are things I do and environmental things such as weather that impacted me before PF and would if I didn't have it. Now, it may be worse with PF. But those are the things I find that make me short of breath or exhausted even though my sats don't drop. Summer here with the heat and horrible air quality was always horrible and made it hard for me to breathe. > > > > > > Sue, > > > > Try not to get too down because you've had a few cruddy days. The > > heat we've been having is brutal and I'm sure your air quality in > VA > > isn't any better than ours here in NC when we have a stationary > front > > like we do now. This kind of stuff can wreak havoc with our > > breathing. Just go slow and don't panic. > > > > > > I hate when doctors circumstances change and we have to make > > adjustments. I go to Duke also, it's actually practically in my > > backyard. LOL Only about 4 miles from my house to the clinc > building > > where I see Dr. on. I'm sure whoever you choose at Duke will > be > > fine. My only advice would be make sure the doctor you choose is a > > specialist in interstitial lung diseases as opposed to a general > > pulmonologist or a specialist in some other type of lung disease. > You > > can get some info about the doctors their educations, background > and > > areas of expertise at this website. > http://www.dukehealth.org/physicians > > > > > > Hope that helps! > > > > > > > > > > > > Beth > > Age 48 Fibrotic NSIP 06/06 > > > > Change everything. Love and Forgive > > > > > > > > > > Re: Back up oxygen systems > > > > > > Thanks guys for your responses. To answer some of your questions – > > > MB: the cart is not made of platinum with mink tips (too bad) in > > fact, the wheels are well worn and the screw that holds the > cylinder > > is almost stripped. When I said Pulmonary > > > > rehab, I actually meant a cardiac and pulmonary maintenance > program > > at the local wellness center. When I went through the hospital > > approved program, they supplied the o2. I am on 4 liters at rest, > > but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm > > exercising, I also have to use a rebreather mask which I hate to > keep > > the o2 levels up. > > > > I am going to take Bruce's advice and > > " diplomatically " inquire of the o2 supplier about the cost of the > > cart rental. I guess what really got me to thinking about > > this, is that I got a bill for over $200 which covered several > > months. It's much easier to pay a smaller amount each month than > > be hit with a whopper of a bill. > > > > I have my 3-month check up coming in a week and > I > > guess I'm nervous about that. I just have this gnawing feeling > > that the disease has progressed. When you have a few bad days, > > you can't help but think it's the disease, but it could be the > > weather or meds too. I have been going to Duke for my care, and > > was told that my dr. is going to be taking over the medical > aspects > > of the transplant program and has to give up his fibrosis > > patients. I've heard a couple of you mention Dr. on and a > > dr. friend also suggested a Dr. Govert. I will see who Dr. > Steele > > recommends and go from there. > > > > Thanks for your suggestions. > > > > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 One thing I have to remind myself sometimes is that there are things I do and environmental things such as weather that impacted me before PF and would if I didn't have it. Now, it may be worse with PF. But those are the things I find that make me short of breath or exhausted even though my sats don't drop. Summer here with the heat and horrible air quality was always horrible and made it hard for me to breathe. > > > > > > Sue, > > > > Try not to get too down because you've had a few cruddy days. The > > heat we've been having is brutal and I'm sure your air quality in > VA > > isn't any better than ours here in NC when we have a stationary > front > > like we do now. This kind of stuff can wreak havoc with our > > breathing. Just go slow and don't panic. > > > > > > I hate when doctors circumstances change and we have to make > > adjustments. I go to Duke also, it's actually practically in my > > backyard. LOL Only about 4 miles from my house to the clinc > building > > where I see Dr. on. I'm sure whoever you choose at Duke will > be > > fine. My only advice would be make sure the doctor you choose is a > > specialist in interstitial lung diseases as opposed to a general > > pulmonologist or a specialist in some other type of lung disease. > You > > can get some info about the doctors their educations, background > and > > areas of expertise at this website. > http://www.dukehealth.org/physicians > > > > > > Hope that helps! > > > > > > > > > > > > Beth > > Age 48 Fibrotic NSIP 06/06 > > > > Change everything. Love and Forgive > > > > > > > > > > Re: Back up oxygen systems > > > > > > Thanks guys for your responses. To answer some of your questions – > > > MB: the cart is not made of platinum with mink tips (too bad) in > > fact, the wheels are well worn and the screw that holds the > cylinder > > is almost stripped. When I said Pulmonary > > > > rehab, I actually meant a cardiac and pulmonary maintenance > program > > at the local wellness center. When I went through the hospital > > approved program, they supplied the o2. I am on 4 liters at rest, > > but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm > > exercising, I also have to use a rebreather mask which I hate to > keep > > the o2 levels up. > > > > I am going to take Bruce's advice and > > " diplomatically " inquire of the o2 supplier about the cost of the > > cart rental. I guess what really got me to thinking about > > this, is that I got a bill for over $200 which covered several > > months. It's much easier to pay a smaller amount each month than > > be hit with a whopper of a bill. > > > > I have my 3-month check up coming in a week and > I > > guess I'm nervous about that. I just have this gnawing feeling > > that the disease has progressed. When you have a few bad days, > > you can't help but think it's the disease, but it could be the > > weather or meds too. I have been going to Duke for my care, and > > was told that my dr. is going to be taking over the medical > aspects > > of the transplant program and has to give up his fibrosis > > patients. I've heard a couple of you mention Dr. on and a > > dr. friend also suggested a Dr. Govert. I will see who Dr. > Steele > > recommends and go from there. > > > > Thanks for your suggestions. > > > > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 One thing I have to remind myself sometimes is that there are things I do and environmental things such as weather that impacted me before PF and would if I didn't have it. Now, it may be worse with PF. But those are the things I find that make me short of breath or exhausted even though my sats don't drop. Summer here with the heat and horrible air quality was always horrible and made it hard for me to breathe. > > > > > > Sue, > > > > Try not to get too down because you've had a few cruddy days. The > > heat we've been having is brutal and I'm sure your air quality in > VA > > isn't any better than ours here in NC when we have a stationary > front > > like we do now. This kind of stuff can wreak havoc with our > > breathing. Just go slow and don't panic. > > > > > > I hate when doctors circumstances change and we have to make > > adjustments. I go to Duke also, it's actually practically in my > > backyard. LOL Only about 4 miles from my house to the clinc > building > > where I see Dr. on. I'm sure whoever you choose at Duke will > be > > fine. My only advice would be make sure the doctor you choose is a > > specialist in interstitial lung diseases as opposed to a general > > pulmonologist or a specialist in some other type of lung disease. > You > > can get some info about the doctors their educations, background > and > > areas of expertise at this website. > http://www.dukehealth.org/physicians > > > > > > Hope that helps! > > > > > > > > > > > > Beth > > Age 48 Fibrotic NSIP 06/06 > > > > Change everything. Love and Forgive > > > > > > > > > > Re: Back up oxygen systems > > > > > > Thanks guys for your responses. To answer some of your questions – > > > MB: the cart is not made of platinum with mink tips (too bad) in > > fact, the wheels are well worn and the screw that holds the > cylinder > > is almost stripped. When I said Pulmonary > > > > rehab, I actually meant a cardiac and pulmonary maintenance > program > > at the local wellness center. When I went through the hospital > > approved program, they supplied the o2. I am on 4 liters at rest, > > but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm > > exercising, I also have to use a rebreather mask which I hate to > keep > > the o2 levels up. > > > > I am going to take Bruce's advice and > > " diplomatically " inquire of the o2 supplier about the cost of the > > cart rental. I guess what really got me to thinking about > > this, is that I got a bill for over $200 which covered several > > months. It's much easier to pay a smaller amount each month than > > be hit with a whopper of a bill. > > > > I have my 3-month check up coming in a week and > I > > guess I'm nervous about that. I just have this gnawing feeling > > that the disease has progressed. When you have a few bad days, > > you can't help but think it's the disease, but it could be the > > weather or meds too. I have been going to Duke for my care, and > > was told that my dr. is going to be taking over the medical > aspects > > of the transplant program and has to give up his fibrosis > > patients. I've heard a couple of you mention Dr. on and a > > dr. friend also suggested a Dr. Govert. I will see who Dr. > Steele > > recommends and go from there. > > > > Thanks for your suggestions. > > > > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 We're more lucky than most here because we get to enjoy oppressive heat, some winter cold, drought, floods, tornados, hail storms, thunderstorms, wind, and fire. > > > Sue, > Try not to get too down because you've had a few cruddy days. The heat we've been having is brutal and I'm sure your air quality in VA isn't any better than ours here in NC when we have a stationary front like we do now. This kind of stuff can wreak havoc with our breathing. Just go slow and don't panic. > > > I hate when doctors circumstances change and we have to make adjustments. I go to Duke also, it's actually practically in my backyard. LOL Only about 4 miles from my house to the clinc building where I see Dr. on. I'm sure whoever you choose at Duke will be fine. My only advice would be make sure the doctor you choose is a specialist in interstitial lung diseases as opposed to a general pulmonologist or a specialist in some other type of lung disease. You can get some info about the doctors their educations, background and areas of expertise at this website. http://www.dukeheal th.org/physician s > > > Hope that helps! > > > > > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > Re: Back up oxygen systems > > > > > Thanks guys for your responses. To answer some of your questions –MB: the cart is not made of platinum with mink tips (too bad) in fact, the wheels are well worn and the screw that holds the cylinder is almost stripped. When I said Pulmonary > rehab, I actually meant a cardiac and pulmonary maintenance program at the local wellness center. When I went through the hospital approved program, they supplied the o2. I am on 4 liters at rest, but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm exercising, I also have to use a rebreather mask which I hate to keep the o2 levels up. > I am going to take Bruce's advice and " diplomatically " inquire of the o2 supplier about the cost of the cart rental. I guess what really got me to thinking about this, is that I got a bill for over $200 which covered several months. It's much easier to pay a smaller amount each month than be hit with a whopper of a bill. > I have my 3-month check up coming in a week and I guess I'm nervous about that. I just have this gnawing feeling that the disease has progressed. When you have a few bad days, you can't help but think it's the disease, but it could be the weather or meds too. I have been going to Duke for my care, and was told that my dr. is going to be taking over the medical aspects of the transplant program and has to give up his fibrosis patients. I've heard a couple of you mention Dr. on and a dr. friend also suggested a Dr. Govert. I will see who Dr. Steele recommends and go from there. > Thanks for your suggestions. > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > > > > > > > > > > ________________________________ > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM > __._,_..___ > Messages in this topic (18) Reply (via web post) | Start a new topic > Messages | Database | Polls | Members | Calendar > MARKETPLACE > > ________________________________ > Blockbuster is giving away a FREE trial of - Blockbuster Total Access. > > Change settings via the Web (Yahoo! ID required) > Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional > Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe > Recent Activity > * 4 > New Members > * 41 > New Photos > * 1 > New LinksVisit Your Group > Meditation and > Lovingkindness > A Yahoo! Group > to share and learn. > Yahoo! Health > Healthy Aging > Improve your > quality of life. > Cat Groups > on Yahoo! Groups > discuss everything > related to cats. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 We're more lucky than most here because we get to enjoy oppressive heat, some winter cold, drought, floods, tornados, hail storms, thunderstorms, wind, and fire. > > > Sue, > Try not to get too down because you've had a few cruddy days. The heat we've been having is brutal and I'm sure your air quality in VA isn't any better than ours here in NC when we have a stationary front like we do now. This kind of stuff can wreak havoc with our breathing. Just go slow and don't panic. > > > I hate when doctors circumstances change and we have to make adjustments. I go to Duke also, it's actually practically in my backyard. LOL Only about 4 miles from my house to the clinc building where I see Dr. on. I'm sure whoever you choose at Duke will be fine. My only advice would be make sure the doctor you choose is a specialist in interstitial lung diseases as opposed to a general pulmonologist or a specialist in some other type of lung disease. You can get some info about the doctors their educations, background and areas of expertise at this website. http://www.dukeheal th.org/physician s > > > Hope that helps! > > > > > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > Re: Back up oxygen systems > > > > > Thanks guys for your responses. To answer some of your questions –MB: the cart is not made of platinum with mink tips (too bad) in fact, the wheels are well worn and the screw that holds the cylinder is almost stripped. When I said Pulmonary > rehab, I actually meant a cardiac and pulmonary maintenance program at the local wellness center. When I went through the hospital approved program, they supplied the o2. I am on 4 liters at rest, but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm exercising, I also have to use a rebreather mask which I hate to keep the o2 levels up. > I am going to take Bruce's advice and " diplomatically " inquire of the o2 supplier about the cost of the cart rental. I guess what really got me to thinking about this, is that I got a bill for over $200 which covered several months. It's much easier to pay a smaller amount each month than be hit with a whopper of a bill. > I have my 3-month check up coming in a week and I guess I'm nervous about that. I just have this gnawing feeling that the disease has progressed. When you have a few bad days, you can't help but think it's the disease, but it could be the weather or meds too. I have been going to Duke for my care, and was told that my dr. is going to be taking over the medical aspects of the transplant program and has to give up his fibrosis patients. I've heard a couple of you mention Dr. on and a dr. friend also suggested a Dr. Govert. I will see who Dr. Steele recommends and go from there. > Thanks for your suggestions. > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > > > > > > > > > > ________________________________ > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM > __._,_..___ > Messages in this topic (18) Reply (via web post) | Start a new topic > Messages | Database | Polls | Members | Calendar > MARKETPLACE > > ________________________________ > Blockbuster is giving away a FREE trial of - Blockbuster Total Access. > > Change settings via the Web (Yahoo! ID required) > Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional > Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe > Recent Activity > * 4 > New Members > * 41 > New Photos > * 1 > New LinksVisit Your Group > Meditation and > Lovingkindness > A Yahoo! Group > to share and learn. > Yahoo! Health > Healthy Aging > Improve your > quality of life. > Cat Groups > on Yahoo! Groups > discuss everything > related to cats. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 We're more lucky than most here because we get to enjoy oppressive heat, some winter cold, drought, floods, tornados, hail storms, thunderstorms, wind, and fire. > > > Sue, > Try not to get too down because you've had a few cruddy days. The heat we've been having is brutal and I'm sure your air quality in VA isn't any better than ours here in NC when we have a stationary front like we do now. This kind of stuff can wreak havoc with our breathing. Just go slow and don't panic. > > > I hate when doctors circumstances change and we have to make adjustments. I go to Duke also, it's actually practically in my backyard. LOL Only about 4 miles from my house to the clinc building where I see Dr. on. I'm sure whoever you choose at Duke will be fine. My only advice would be make sure the doctor you choose is a specialist in interstitial lung diseases as opposed to a general pulmonologist or a specialist in some other type of lung disease. You can get some info about the doctors their educations, background and areas of expertise at this website. http://www.dukeheal th.org/physician s > > > Hope that helps! > > > > > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > Re: Back up oxygen systems > > > > > Thanks guys for your responses. To answer some of your questions –MB: the cart is not made of platinum with mink tips (too bad) in fact, the wheels are well worn and the screw that holds the cylinder is almost stripped. When I said Pulmonary > rehab, I actually meant a cardiac and pulmonary maintenance program at the local wellness center. When I went through the hospital approved program, they supplied the o2. I am on 4 liters at rest, but I find 3 is OK too, but I'm on 6-8 on exertion. When I'm exercising, I also have to use a rebreather mask which I hate to keep the o2 levels up. > I am going to take Bruce's advice and " diplomatically " inquire of the o2 supplier about the cost of the cart rental. I guess what really got me to thinking about this, is that I got a bill for over $200 which covered several months. It's much easier to pay a smaller amount each month than be hit with a whopper of a bill. > I have my 3-month check up coming in a week and I guess I'm nervous about that. I just have this gnawing feeling that the disease has progressed. When you have a few bad days, you can't help but think it's the disease, but it could be the weather or meds too. I have been going to Duke for my care, and was told that my dr. is going to be taking over the medical aspects of the transplant program and has to give up his fibrosis patients. I've heard a couple of you mention Dr. on and a dr. friend also suggested a Dr. Govert. I will see who Dr. Steele recommends and go from there. > Thanks for your suggestions. > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA > > > > > > > > > > ________________________________ > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1489 - Release Date: 6/7/2008 11:17 AM > __._,_..___ > Messages in this topic (18) Reply (via web post) | Start a new topic > Messages | Database | Polls | Members | Calendar > MARKETPLACE > > ________________________________ > Blockbuster is giving away a FREE trial of - Blockbuster Total Access. > > Change settings via the Web (Yahoo! ID required) > Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional > Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe > Recent Activity > * 4 > New Members > * 41 > New Photos > * 1 > New LinksVisit Your Group > Meditation and > Lovingkindness > A Yahoo! Group > to share and learn. > Yahoo! Health > Healthy Aging > Improve your > quality of life. > Cat Groups > on Yahoo! Groups > discuss everything > related to cats. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Fay Well, we just burned down our governor's mansion, although not weather related, but arson. No injuries as it was undergoing renovation and no one living there. However, I do love this quote: Asked Monday if their security measures had fallen short, DPS officials said they were still reviewing Sunday morning's events. Duh.....seems sort of a no brainer to me. > >> >> > Sue,> > Try not to get too down because you've had a few cruddy days. The heat> we've been having is brutal and I'm sure your air quality in VA isn't> any better than ours here in NC when we have a stationary front like we> do now. This kind of stuff can wreak havoc with our breathing. Just go> slow and don't panic.> >> >> > I hate when doctors circumstances change and we have to make> adjustments. I go to Duke also, it's actually practically in my> backyard. LOL Only about 4 miles from my house to the clinc building> where I see Dr. on. I'm sure whoever you choose at Duke will be> fine. My only advice would be make sure the doctor you choose is a> specialist in interstitial lung diseases as opposed to a general> pulmonologist or a specialist in some other type of lung disease. You> can get some info about the doctors their educations, background and> areas of expertise at this website. http://www.dukeheal th.org/physician> s> >> >> > Hope that helps!> >> >> >> >> >> > Beth> > Age 48 Fibrotic NSIP 06/06> >> > Change everything. Love and Forgive> >> >> >> >> >> > Re: Back up oxygen systems> >> >> >> >> > Thanks guys for your responses. To answer some of your questions> –MB: the cart is not made of platinum with mink tips (too bad) in> fact, the wheels are well worn and the screw that holds the cylinder is> almost stripped. When I said Pulmonary> > rehab, I actually meant a cardiac and pulmonary maintenance program> at the local wellness center. When I went through the hospital> approved program, they supplied the o2. I am on 4 liters at rest, but I> find 3 is OK too, but I'm on 6-8 on exertion. When I'm> exercising, I also have to use a rebreather mask which I hate to keep> the o2 levels up.> > I am going to take Bruce's advice and> "diplomatically" inquire of the o2 supplier about the cost of> the cart rental. I guess what really got me to thinking about > this, is that I got a bill for over $200 which covered several> months. It's much easier to pay a smaller amount each month than> be hit with a whopper of a bill.> > I have my 3-month check up coming in a week and I> guess I'm nervous about that. I just have this gnawing feeling> that the disease has progressed. When you have a few bad days, you> can't help but think it's the disease, but it could be the> weather or meds too. I have been going to Duke for my care, and was> told that my dr. is going to be taking over the medical aspects of the> transplant program and has to give up his fibrosis patients. > I've heard a couple of you mention Dr. on and a dr. friend> also suggested a Dr. Govert. I will see who Dr. Steele recommends and> go from there.> > Thanks for your suggestions.> > Sue D, 62 yr old, Fibrotic NSIP dx 9/07, VA> >> >> >> >> >> >> >> >> >> > ____________ _________ _________ __> >> >> > No virus found in this incoming message.> > Checked by AVG.> > Version: 8.0.100 / Virus Database: 270.0.0/1489 - Release Date:> 6/7/2008 11:17 AM> > __._,_..___> > Messages in this topic (18) Reply (via web post) | Start a new topic> > Messages | Database | Polls | Members | Calendar> > MARKETPLACE> >> > ____________ _________ _________ __> > Blockbuster is giving away a FREE trial of - Blockbuster Total Access.> >> > Change settings via the Web (Yahoo! ID required)> > Change settings via email: Switch delivery to Daily Digest | Switch> format to Traditional> > Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe> > Recent Activity> > * 4> > New Members> > * 41> > New Photos> > * 1> > New LinksVisit Your Group> > Meditation and> > Lovingkindness> > A Yahoo! Group> > to share and learn.> > Yahoo! Health> > Healthy Aging> > Improve your> > quality of life.> > Cat Groups> > on Yahoo! Groups> > discuss everything> > related to cats.> > .> >> Quote Link to comment Share on other sites More sharing options...
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