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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, The most important thing to do for your body is NOT to let your saturation go below 90.. cells begin to die within a very short time. Your heart, brain and other organs begin to suffer. It is not worth the chance. I don't understand why you can't use 02 at work.. but going into the 80's is not good. Has your Dr. given you 02 for sleeping? I think at this point you really need to sit down and have a good information talk with your Dr.Take Care of you Walt Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. 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.”

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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

To: Lung <Breathe-Support >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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Thank you Peggy

Nothing at night No o2 at all .My Doc is all over the board on what’s wrong with me. All he wants to do is prednisone its like he has stock in it or something When I decided not to continue with the prednisone after 10 months with no changes in my lungs and 50 lbs later he seems disinterested. SO I am looking for a new pulmo Doc. I am a Boiler operator on a Navy Base so no o2 here. I thought 90 was the magic # but was hoping I heard wrong.

Again thanks

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€

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,

Just because each one of us is different in our dx, dosen't not mean we are "worse off" than you. If you have a question or comment PLEASE do so. We GET IT. Just remember we are here for each other. Talk I'll listen, cry and my shoulder is here, laugh and we will laugh with you. All any of us want to do is to survive one day at a time TOGETHER. Keep the Love of Family and Friends in you life and LIVE one day at a time. A 6/05 HP PF COPD ASHMA etc. 60yr TN

Subject: ?? ??To: "Lung" <Breathe-Support >Date: Monday, August 17, 2009, 2:18 PM

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,

Everyone has done a great job explaining your O2 situation to you.

I'm writing because I was concerned about your hesitance to post.

I was misdiagnosed with exercise induced asthma at 9 years old (1984)with many

other odd dx's to follow. Everyday of my life I was dealing with new symptoms

(changing in breathing, pains,countless infections.) Over the years my mom

stopped taking me to the doctor, my husband and a few friends got tired of

hearing about my daily battles. I even started thinking it was all in my head.

It wasn't until Jan. 06 that I was officially diagnosed. My diagnosis was so

much more than that to me. It gave me and my family answers we never thought

we'd have. It brought me a sense of freedom. I no longer feel like I have to

keep my pain to myself.

Please don't ever hesitate to vent or get input. You have every right to speak

up and ask questions and talk about your struggles. No matter what stage you are

in there of course will be someone who has prgressed further. You are not

whining you are only seeking wisdom ;)

We are all here for you. We get it. That's what we do.

34 FL

IPF dx 1/06

>

> 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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