Re: Re: scared - prescribed oxygen levels

[Guest guest]

Thank you Sefani- I just breathed when walking up the incline and the stairs. I was on 4 lpm because that is what they said I should be on when"exercising" and don't really know what "exercising" means. My pulmodude said I should be on from 4-6 lpm...but when on the treadmill for 5 min 0% incline I am at 4 lpm and my stats are still in the 90's...but just put a 1% incline and I go down hill fast. I cannot go for 5 minutes. I hope I never see stairs again but if I encounter them I willremeber to breathe OUT when I lift up to the next stair. Thanks.Joyce rudy AZ birds

Prescribed oxygen levels, great topic. Originally my GP told me to use 2 Liters of oxygen at night until I could see a pulmo-dude. The pulmo-dude ran all these tests and never mentioned oxygen. 3 years pass, I make modifications in my life style to accommodate my SOB as I had dumped the pulmo dude (he was no help at all with the SOB). Then I went to NJ in Denver where they say I should be using 4L to walk. I get back to Salt Lake City and they confirmed 4L. Rehab tells me I need upwards of 6L while doing aerobic activities like walking on a treadmill with 2 degree incline (surprise, anaerobic weight lifting, I don't need even a liter, though I monitor it just to be sure). I have found that at any given time with any level of exertion I will need anywhere from .5L to 6L on pulse or continuous flow depending on what I am doing. It is a moving target that you learn to adjust to. The rehab taught me breathing techniques that have helped tremendously. Steps, breathe out on exertion, breathe in on the other side or non-exerting portion of your task. The therapist explained that by breathing out on the exertion you are not using energy to breathe in. Makes sense and helps a lot. I do steps slower and breathe out as I "lift" myself to the next step. Makes it easier to take more steps before I feel the exertion. Whenever I encounter a new perceived level of exertion I take note and think about the best way to handle the "new hurdle" with breathing techniques and/or modified O2 levels. I look at it as a life learning experience... life is full of opportunities to learn new things. This is just one of them. LOL Take care, and hang in there.Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> >> > Joyce,> > Your doctors prescription for your oxygen use is an educated estimate> of what your needs are under most of the circumstances he/she> expected you to be in.> >> > You however put yourself in an extraordinary circumstance. No one uses> the same liters per minute all the time. And your doctor didn't forsee> you hauling baked goods up a hill, and the up two flights of> stairs.> > When I have to do something particularly strenuous, I turn my O2 up> and then turn it back down when I'm finished. Your sat probably dropped> quite a bit while you were doing this.> >> > I know what it's like to be independent but I've gradually learned> that if I want to continue to do things and contribute my effort> to things I care about I have to work within the limitations of my> lousy lungs! It's just the way it is.> >> > By the way, self cleaning ovens do make a stink when they run.> When I run mine the windows stay wide open and I run a> fan exhausting the stink out of the kitchen. While it's running I also> stay in another part of the house.> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> > ________________________________> > From: "BlueLiddy@" BlueLiddy@> > To: Breathe-Support > > Sent: Sat, November 14, 2009 8:32:37 PM> > Subject: Re: scared> >> > Â> > Beth- I didn't know what my stats were. Though I had my oximeter> with me I had my hands full of pumpkin pie which I made on Friday.> Friday I made 2 pumpkin pies,24 brownies with frosting and 2 quick> breads. It was quite tiring. Oh also roasted a turkey for my dogs on> Friday and by the end I could barely eat. Which reminds me...I> cleaned the oven the day before and the fumes about wiped me out! Talk> about bad for your lungs. I thought I was going to die! I took my dogs> and barricaded myself in the bedroom and thought it was freezing I> opened ever window and door in the house. I had never used a self> cleaning oven before and my God it is horrible! How do you do it????Â> But, today I couldn't look to see my stats. I had my 02 on continuous> 4lpm and never thought I could increase it. I thought when a doctor told> you what your lpm are you had to stick to that. I just have to tell you> on the second set of stairs I thought I would die...I had to be> > helped up...Since I wrote this post I laid down and slept. I slept> and slept and slept. I have had no appetite but know I must eat> something because of my diabetes meds. That trip just about destroyed> me! Joyce Rudy AZ birds.> >> > In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time,> mbmurtha (AT) yahoo (DOT) com writes:> > Â> > >Joyce,> > >I'll lay odds it's not your weight. I think it's your lungs and has> little to do with fat. You've lost 15 pounds and you're exercising> regularly. You are taking care of yourself.> > >> > >You didn't mention whether you checked your sat...what was it? Do> you know? Did you try turning your oxygen up a bit? It's> frustrating when you set your self a task and then can't complete it> because you can't breathe. All of us have had that experience and> understand how you are feeling. It sounds as though you were trying to> accomplish too much. Carrying baked goods, an incline and two flights of> stairs, it would definitely be way too much for me. As hard as it is to> adjust your thinking, you've got to do it. You haven't found your new> normal yet. You will. You bumped up against a limitation today. That's> likely all it is. You will learn to be more realistic when it comes to> this kind of stuff but it takes time.> > >> > >As to what your friends are saying...are these the same friends who> were against you seeking a second opinion at NJH? Please, please,> please stop listening to people who don't understand your lung disease.> > >> > >> > > Beth> > >Moderator> > >Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >Â> > >Â> > >> > >> > >> > >> > >> > ________________________________> > From: Joyce BlueLiddy (AT) aol (DOT) com>> > >To: Breathe-Support@ yahoogroups. com> > >Sent: Sat, November 14, 2009 5:29:13 PM> > >Subject: scared> > >> > >Â> > >I went to deliver some baked goods to a bake sale for one of my> groups and had to park in the lower lot. Had to walk up a 2% incline and> 2 flights of stairs and couldn't make it up the second flight without> assistance. I asked for help retrieving the other baked goods and was> given it. I knew I couldn't do it again. It scared me. I don't undestand> why I couldn't do it. My 02 was on constant and I still co8uldn't make> it. I left feeling scared and frustrated and embarrassed and blue...I> think this illness is going to kill me. On my last visit to NJH what> they didn't rerun was the test where you ride a bike on an incline...my> friend said it is becaus I'm fat and my diaphram can't expand but that> is bull shit. Everyone says it is because I amfat. But I have lost 15> pounds. there were fatter people then me going in and out that place.> Every one blames it onmy beign fat. I amso sick of that! That is the> reason i didn't go to the doctor sooner because I wasw> > fat. Everyone says it is because i am fat. Screw them! Anyway, I> think I am going todie ofbeing fat....I think thefat is going tokill> me.Joyce rudy AZ birds> > >> > >> >>

[Guest guest]

Stefani,

Thanks for making such great points. Our oxygen needs are absolutely a 'moving target'. That's a great way to think of it. Because of that we have to be willing and able to adjust to meet our needs.

You also talked about learning 'how' to breathe when we're exerting. That's something that's covered at most pulmonary rehab's and it's importance I think is underappreciated. These concepts about when to inhale and when to exhale when exerting are difficult to explain on paper and easier to understand when demonstrated. That's part of the value of attending a good rehab program.

Thanks!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, November 14, 2009 11:57:04 PMSubject: Re: scared - prescribed oxygen levels

Prescribed oxygen levels, great topic. Originally my GP told me to use 2 Liters of oxygen at night until I could see a pulmo-dude. The pulmo-dude ran all these tests and never mentioned oxygen. 3 years pass, I make modifications in my life style to accommodate my SOB as I had dumped the pulmo dude (he was no help at all with the SOB). Then I went to NJ in Denver where they say I should be using 4L to walk. I get back to Salt Lake City and they confirmed 4L. Rehab tells me I need upwards of 6L while doing aerobic activities like walking on a treadmill with 2 degree incline (surprise, anaerobic weight lifting, I don't need even a liter, though I monitor it just to be sure). I have found that at any given time with any level of exertion I will need anywhere from .5L to 6L on pulse or continuous flow depending on what I am doing. It is a moving target that you learn to adjust to. The rehab taught me breathing techniques that have helped tremendously.

Steps, breathe out on exertion, breathe in on the other side or non-exerting portion of your task. The therapist explained that by breathing out on the exertion you are not using energy to breathe in. Makes sense and helps a lot. I do steps slower and breathe out as I "lift" myself to the next step. Makes it easier to take more steps before I feel the exertion. Whenever I encounter a new perceived level of exertion I take note and think about the best way to handle the "new hurdle" with breathing techniques and/or modified O2 levels. I look at it as a life learning experience.. . life is full of opportunities to learn new things. This is just one of them. LOL Take care, and hang in there.Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> >> > Joyce,> > Your doctors prescription for your oxygen use is an educated estimate> of what your needs are under most of the circumstances he/she> expected you to be in.> >> > You however put yourself in an extraordinary circumstance. No one uses> the same liters per minute all the time. And your doctor didn't forsee> you hauling baked goods up a hill, and the up two flights of> stairs.> > When I have to do something particularly

strenuous, I turn my O2 up> and then turn it back down when I'm finished. Your sat probably dropped> quite a bit while you were doing this.> >> > I know what it's like to be independent but I've gradually learned> that if I want to continue to do things and contribute my effort> to things I care about I have to work within the limitations of my> lousy lungs! It's just the way it is.> >> > By the way, self cleaning ovens do make a stink when they run.> When I run mine the windows stay wide open and I run a> fan exhausting the stink out of the kitchen. While it's running I also> stay in another part of the house.> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> >

____________ _________ _________ __> > From: "BlueLiddy@" BlueLiddy@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, November 14, 2009 8:32:37 PM> > Subject: Re: scared> >> > Â> > Beth- I didn't know what my stats were. Though I had my oximeter> with me I had my hands full of pumpkin pie which I made on Friday.> Friday I made 2 pumpkin pies,24 brownies with frosting and 2 quick> breads. It was quite tiring. Oh also roasted a turkey for my dogs on> Friday and by the end I could barely eat. Which reminds me...I> cleaned the oven the day before and the fumes about wiped me out! Talk> about bad for your lungs. I thought I was going to die! I took my dogs> and barricaded myself

in the bedroom and thought it was freezing I> opened ever window and door in the house. I had never used a self> cleaning oven before and my God it is horrible! How do you do it????Â> But, today I couldn't look to see my stats. I had my 02 on continuous> 4lpm and never thought I could increase it. I thought when a doctor told> you what your lpm are you had to stick to that. I just have to tell you> on the second set of stairs I thought I would die...I had to be> > helped up...Since I wrote this post I laid down and slept. I slept> and slept and slept. I have had no appetite but know I must eat> something because of my diabetes meds. That trip just about destroyed> me! Joyce Rudy AZ birds.> >> > In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time,> mbmurtha (AT) yahoo (DOT) com writes:> > Â> > >Joyce,> > >I'll

lay odds it's not your weight. I think it's your lungs and has> little to do with fat. You've lost 15 pounds and you're exercising> regularly. You are taking care of yourself.> > >> > >You didn't mention whether you checked your sat...what was it? Do> you know? Did you try turning your oxygen up a bit? It's> frustrating when you set your self a task and then can't complete it> because you can't breathe. All of us have had that experience and> understand how you are feeling. It sounds as though you were trying to> accomplish too much. Carrying baked goods, an incline and two flights of> stairs, it would definitely be way too much for me. As hard as it is to> adjust your thinking, you've got to do it. You haven't found your new> normal yet. You will. You bumped up against a limitation today. That's> likely all it is. You will learn to be more

realistic when it comes to> this kind of stuff but it takes time.> > >> > >As to what your friends are saying...are these the same friends who> were against you seeking a second opinion at NJH? Please, please,> please stop listening to people who don't understand your lung disease.> > >> > >> > > Beth> > >Moderator> > >Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >Â> > >Â> > >> > >> > >> > >> > >> > ____________ _________ _________ __> > From: Joyce BlueLiddy (AT) aol (DOT) com>> > >To: Breathe-Support@ yahoogroups. com> > >Sent: Sat, November 14, 2009 5:29:13 PM> > >Subject: scared> > >> > >Â> > >I went to deliver some baked goods to a

bake sale for one of my> groups and had to park in the lower lot. Had to walk up a 2% incline and> 2 flights of stairs and couldn't make it up the second flight without> assistance. I asked for help retrieving the other baked goods and was> given it. I knew I couldn't do it again. It scared me. I don't undestand> why I couldn't do it. My 02 was on constant and I still co8uldn't make> it. I left feeling scared and frustrated and embarrassed and blue...I> think this illness is going to kill me. On my last visit to NJH what> they didn't rerun was the test where you ride a bike on an incline...my> friend said it is becaus I'm fat and my diaphram can't expand but that> is bull shit. Everyone says it is because I amfat. But I have lost 15> pounds. there were fatter people then me going in and out that place.> Every one blames it onmy beign fat. I amso sick of that! That is

the> reason i didn't go to the doctor sooner because I wasw> > fat. Everyone says it is because i am fat. Screw them! Anyway, I> think I am going todie ofbeing fat....I think thefat is going tokill> me.Joyce rudy AZ birds> > >> > >> >>