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Beth

You and others have talked about o2 and I think I know all that or al least I should by now BUT I guess I was just hoping for something different. I have a apt 10 sep. but I am looking for a new doc that has another thought besides prednisone being the only answer.

I am the a Boiler plant operator on a Nave base so o2 and confined spaces and fire don’t go together. I was hoping to get two more years and when My son graduated high school and off to college I was going to retire and Move down south. Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

Subject: Re: ?? ??To: Breathe-Support Date: Monday, August 17, 2009, 1:07 PM

Walt,

What you're looking at are oxygen saturations that probably indicate you should be on oxygen at least for exertion. It sounds like your sats are ok when you are sitting but when you do something like walk up a flight of stairs they drop below 90. That's what you don't want.

When do you next see the doctor? If you don't have an appointment coming up in the next few weeks you should probably schedule one. It worries me that you say you can't use oxygen at work. I understand wanting to keep your health issues private but you also don't want to endanger yourself in the process.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Walt <island_walt@ yahoo.com>To: Lung <Breathe-Support@ yahoogroups. com>Sent: Monday, August 17, 2009 3:18:29 PMSubject: ?? ??

Hello Everyone Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can. On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€__________________________________________________

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Walt,

Yikes! No you're definitely right about that...yours is not the kind of job that would lend itself easily to using oxygen.

Don't whip yourself into a frenzy before you know for sure what's going on. You've got a doctors appointment in less than a month. That's a good thing. The other good thing is it truly does sound as though your non-exertion sats are fine. Your exertion sats are borderline from what you've said. How much of your job is active? Are you primarily on your feet, moving around climbing stairs etc? Or are you primarily at your desk?

I hope you can find a doctor that you are comfortable with. That's a huge factor that affects us more than most people realize.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, August 17, 2009 4:19:45 PMSubject: Re: ?? ?? Mery Beth

Beth You and others have talked about o2 and I think I know all that or al least I should by now BUT I guess I was just hoping for something different. I have a apt 10 sep. but I am looking for a new doc that has another thought besides prednisone being the only answer.

I am the a Boiler plant operator on a Nave base so o2 and confined spaces and fire don’t go together. I was hoping to get two more years and when My son graduated high school and off to college I was going to retire and Move down south. Thank you Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: ?? ??To: Breathe-Support@ yahoogroups. comDate: Monday, August 17, 2009, 1:07 PM

Walt,

What you're looking at are oxygen saturations that probably indicate you should be on oxygen at least for exertion. It sounds like your sats are ok when you are sitting but when you do something like walk up a flight of stairs they drop below 90. That's what you don't want.

When do you next see the doctor? If you don't have an appointment coming up in the next few weeks you should probably schedule one. It worries me that you say you can't use oxygen at work. I understand wanting to keep your health issues private but you also don't want to endanger yourself in the process.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Walt <island_walt@ yahoo.com>To: Lung <Breathe-Support@ yahoogroups. com>Sent: Monday, August 17, 2009 3:18:29 PMSubject: ?? ??

Hello Everyone Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can. On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€____________ _________ _________ _________ _________ __

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Beth

I am the supervisor so if you ask my guys I do a lot of sitting .lol, No I am pretty active well I used to be. I successfully ignored all yours, Bruce’s and others advice about o2 but I was soooo tired that after work it was a strain to do anything and almost couldn’t drive home, I rested all weekend and had to almost have help dragging out of bed in the morning. Then when it felt like a bus ran over me and I just hurt all over I thought maybe I should pay attention. I am starting to understand what my Mom dealt with (sorry Mom) Thanks for the info and Hey I can always be used for a bad example of what not to do about o2.

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: ?? ??To: Breathe-Support@ yahoogroups. comDate: Monday, August 17, 2009, 1:07 PM

Walt,

What you're looking at are oxygen saturations that probably indicate you should be on oxygen at least for exertion. It sounds like your sats are ok when you are sitting but when you do something like walk up a flight of stairs they drop below 90. That's what you don't want.

When do you next see the doctor? If you don't have an appointment coming up in the next few weeks you should probably schedule one. It worries me that you say you can't use oxygen at work. I understand wanting to keep your health issues private but you also don't want to endanger yourself in the process.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Walt <island_walt@ yahoo.com>To: Lung <Breathe-Support@ yahoogroups. com>Sent: Monday, August 17, 2009 3:18:29 PMSubject: ?? ??

Hello Everyone Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can. On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€____________ _________ _________ _________ _________ __

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Dear Walt,How winded did you feel when you checked your pulse ox?I was doing some moderate aerobic exercise today and was feeling winded and my chest felt tight. I checked my p. ox-it was 80, heart rate 55. I kinda just stared at the number waiting for it to come up and it took about a min. or so before I was 90 and inching up. Now mind you that's while exercising moderately. I actually called my husband over to look at the number. I kinda freaked because I've been in the mid to low 90's on the treadmill and bike. With mild activity I'm in the mid to upper 90's. I've been on steroid inhalers for 4 months and thought I was doing so much better. So, I feel knocked down a bit. Now, I read your post after this happened so I know where your coming from. I will continue to exercise but slow it down a bit. I have appt. to see pulmodude in Sept. Maybe I'll email him and let him know what happened. It couldn't hurt.PJ in Ohio, 54, IPF '09, Sjogren's '95 ?? ??

Hello Everyone

Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can.

On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€__________________________________________________

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PJ,

Judging from my own experience, I wouldn't take your seemingly poor performance in aerobic exercise as an indication of something amiss unless a PFT indicates otherwise. At a moderate pace on the treadmill, my O2 level will stay above 90%, and I go for miles every day. If, on the other hand, I try aerobic exercises which involve any knee bends, jumping, even moderate bending, I very quickly go into the middle 80s. Once your heart hits that oxygen threshold where it is trying to pump oxygen to the needy muscles, and at the same time is putting its own demand on your lung's exchange load, then all bets are off for keeping within a safe O2 range. While walking, on the other hand, our leg muscles contract and tighten, thus helping the heart to pump blood into the veins and back for more oxygen. For us with PF, walking burns more calories with less strain on heart and lungs than any other exercise. You might try working longer on the

treadmill, and then use more flexing exercises to keep other muscles toned. And like you, I keep that O2 meter handy.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: Beth Subject: Re: ?? ??To: Breathe-Support@ yahoogroups. comDate: Monday, August 17, 2009, 1:07 PM

Walt,

What you're looking at are oxygen saturations that probably indicate you should be on oxygen at least for exertion. It sounds like your sats are ok when you are sitting but when you do something like walk up a flight of stairs they drop below 90. That's what you don't want.

When do you next see the doctor? If you don't have an appointment coming up in the next few weeks you should probably schedule one. It worries me that you say you can't use oxygen at work. I understand wanting to keep your health issues private but you also don't want to endanger yourself in the process.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Walt To: Lung Sent: Monday, August 17, 2009 3:18:29 PMSubject: ?? ??

Hello Everyone

Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can.

On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€____________ _________ _________ _________ _________ __

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Thanks Jerry for the exercise information. I did my own 6 min walk today and stayed 95-97%. What a relief. I think I'll stick to walking or biking.I think I'll forget the eliptical machine since I can't seem to do two minutes consistently. PJ in Ohio, 54, IPF '09, Sjogren's '95 ?? ??

Hello Everyone

Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can.

On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€____________ _________ _________ _________ _________ __

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That is a great O2 range you have for a 6MW, no matter the speed or O2 you use. Over the miles, I will fall down to 90-92% at 3 MPH. If I really get relaxed and zone out everything, I can bring up my sats. When I was on O2 full time, I would do pushups and situps, but without that help now, that is all but impossible, and certainly not a healthy thing to do. I am glad you thought to do the 6 minute test. Good luck.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: Beth Subject: Re: ?? ??To: Breathe-Support@ yahoogroups. comDate: Monday, August 17, 2009, 1:07 PM

Walt,

What you're looking at are oxygen saturations that probably indicate you should be on oxygen at least for exertion. It sounds like your sats are ok when you are sitting but when you do something like walk up a flight of stairs they drop below 90. That's what you don't want.

When do you next see the doctor? If you don't have an appointment coming up in the next few weeks you should probably schedule one. It worries me that you say you can't use oxygen at work. I understand wanting to keep your health issues private but you also don't want to endanger yourself in the process.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Walt To: Lung Sent: Monday, August 17, 2009 3:18:29 PMSubject: ?? ??

Hello Everyone

Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can.

On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€____________ _________ _________ _________ _________ __

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Thanks Jerry!PJ in Ohio, 54, IPF '09, Sjogren's '95 ?? ??

Hello Everyone

Hope you all had a weekend that made memories!! Since DX I have tried to make the most out of everything. Awhile back I was at the beach with my granddaughter 4 years old and she look at me and said that “we were makings memories†not sure what she meant I ask her and she said “you know when I’m home I can think about playing with PaPa†As much as I can do, I do, while I can.

On another note, I need to ask for some advice, Listing to manly Bruce and Beth I bought an pulse oximeter(thank you, I think). So I got it Saturday and gave it a try it read o2 88 pulse 102 so I quickly put it away. I dug it out today at work Sitting I am o2 90 to 95 with pulse from 80 to 91 walking up stairs and down at work I am 87 o2 with 102 pulse. Work does not know I’m sick and I wont be able to use o2 at work I know the #'s are lower then they have been at the doc 4 months ago with my 6 mw. Here is my question! What am I looking at?????? I am a little freaked out. I have been hesitant to say anything here because so many people are much worse off but not sure where else to turn.Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€____________ _________ _________ _________ _________ __

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