Question

[Guest guest]

Maddie just doesn't move around as much as she should. She hates tummy time,

not that I don't push it anyway, and she's had lots of trouble with rolling

over. Hopefully now that her hours have been reduced more, she'll move around a

lot more. I'm sure the constipation is not strictly FAB related, but I'm sure

the lack of movement doesn't help much. She is now starting to roll over, and

not scream, with out her FAB. I'll try the belly rubs too. Thanks.

- Michele

5/18/02 and Maddie 9/6/05 bcf s 14/7

number23 wrote:

I'm not convinced the constipation is FAB related, but I guess it could be.

How old is she? If she's getting plenty of floor time and tummy time she ought

to be kicking her legs around plenty to keep her system moving adequately. You

might want to lay her on her back and move her legs by holding her bar - lift

them high to her head up and down, and rock from side to side as you lift up and

set down; also belly rubs can help.

s.

Question

I don't know if any of your kids have had this problem before, but

Maddie is terribly constipated due mostly to lack of moving around

with the boots and bar. I've given her prune juice, sugar water,

omitted binding foods like rice and bananas, but she is still having

problems. She just got her hours reduced to 14 per day, but in the

meantime, any suggestions. What foods, other than prunes, do you know

of that " inspires pooping " . i just feel awful for her because she's

straining all the time, and when she does manage to go, it's small and

hard as a rock. Any advice would be greatly appreciated.

- Michele

5/18/02 and Maddie 9/6/05 bcf s 14/7

[Guest guest]

Straight apple juice is the best constipation remedy out there, in my opinion.

All my babies have been breastfed so I have not dealt with constipation, but I

know that too much apple juice for my babies and toddlers has made them have

diarrhea. Learned that the hard way. LOL

is in the FAB and about 6 weeks younger than Maddie and is not

constipated so I don't think it is FAB related. Might be related to the

formula, too. Some babies have dairy issues. Since she has soy issues, I don't

know where that leaves you next. I know the hypoallergenic formulas (like

Nutramigen) are very expensive. Oatmeal is a fiber rich cereal so that might

help her to go. Hope you can get her some relief soon!

Carol and

Re: Re: Question

We do use the Good Start Formula, which has been wonderful for her gas

problems. the poor kid used to have a lot of spit up and gas issues. Those are

gone now, only to be replaced with constipation and reflux. She takes baby

zantac for the reflux, but I'm hoping the constipation can be cured with some of

the great tips I've been getting from all of you. My older daughter is allergic

to dairy products, so we initially started Maddie on soy, but that caused a lot

of problems. So far, the Good Start is the best formula we've tried. Thanks

for all the help and advice. You guys are great.

- Michele

5/18/02 and Maddie 9/6/05

wrote:

Michele,

Is she breast or bottle fed? Could be something in your diet or the

formula you are using. We have used Carnation Good Start with both

kids, I swear it makes them less gassy than other formulas. You might

also check with the Pediatrician about trying a soy formula.

>

> I don't know if any of your kids have had this problem before, but

> Maddie is terribly constipated due mostly to lack of moving around

> with the boots and bar. I've given her prune juice, sugar water,

> omitted binding foods like rice and bananas, but she is still having

> problems. She just got her hours reduced to 14 per day, but in the

> meantime, any suggestions. What foods, other than prunes, do you know

> of that " inspires pooping " . i just feel awful for her because she's

> straining all the time, and when she does manage to go, it's small and

> hard as a rock. Any advice would be greatly appreciated.

> - Michele

> 5/18/02 and Maddie 9/6/05 bcf s 14/7

>

[Guest guest]

....

How did you feel pre-SCD when eating things like wedding cake, or rice bread?

Would these have caused bad bloating and other symptoms before?

It just makes me think that maybe, despite the constipation you've had while on

the diet, SCD has helped to heal your gut just enough to tolerate these foods

better than you could before? Or.... that it has helped to reduce the

population of bad gut bugs just enough to get the flora back in balance?

Only you will be able to decide whether you are continuing to get better now

that you're off SCD.... holding your own.... or getting worse again. You'll

have to decide at that point what to do. For the time being, it sounds like you

are feeling good on your present meal plan. I hope it continues for you.

Patti

question

I hope it is okay that I say/ask what I am about to on here.

I went away on vacation and just got back a week ago. I stayed 100%

SCD for most of the week I was away until the end..it started with a

piece of wedding cake..then I had coconut milk and some rice bread. My

stomach and my bowels were better then they have been since probably 8

years ago.

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[Guest guest]

,

This could be the bad bugs being satiated for a while with some food and not

giving you any trouble. They are happy now because they have been fed. That

could be short lived. Its just a thought.

Charlene

I hope it is okay that I say/ask what I am about to on here.

I went away on vacation and just got back a week ago. I stayed 100%

SCD for most of the week I was away until the end..it started with a

piece of wedding cake..then I had coconut milk and some rice bread. My

stomach and my bowels were better then they have been since probably 8

years ago. The last few months doing SCD I was having no bowel

movements at all. No matter how much veggies/fruit I ate, despite

cutting out dairy and drowning myself in water I was pretty bound up.

It was like my IBS-C had returned worse then ever.

Since being home now, I've re-introduced gluten/dairy free bread or

cereal for breakfast along with either homemade nut milk or rice milk

and I'm having BM's everyday and I'm not bloated. I don't understand

why this would be happening when bread, even though its gluten free,

is supposed to make things worse. Part of me thinks I should go back

100% scd but on the other hand, I don't want to go back to being

constantly bloated and constipated.

Any thoughts on this?

Thankyou

[Guest guest]

Yes, green and goopy is typical in the beginning as lots of changes are

happening and die-off is occurring.

<<But in his stool I notice many strain

like material and I wonder if its from the bananas I cook for him and

if it still is ok to give him cooked banana?>>

I'm not exactly sure what you mean by " strain like material " . Yes, you can

give him cooked banana or uncooked banana..... as long as it was very nicely

ripe to begin with. The skins need to be spotted all over with brown spots.

And the type of banana you use is important..... I don't know where you live

but we need to use the common Cavendish variety bananas (commonly sold in Europe

and North America). Plantains, for example, are not legal.

Patti

QUESTION

I started the intro diet last monday and on friday I started giving

riped bananas in many forms(i.e. pancakes). When starting the intro my

son did not have a stool till two days after monday and it was green

and goopy. Then two days after that I noticed that he was having more

of a texture in his stool so I knew it was working. Is his green goopy

stool a die-off?

Also in my family we actually cook bananas usually green bananas but

for my son I wait till it ripens. But in his stool I notice many strain

like material and I wonder if its from the bananas I cook for him and

if it still is ok to give him cooked banana?

[Guest guest]

I know what you are talking about. I think the strain-like things are the fiber

from the bananas. They used to tell us when we started feeding babies ripe

banana to expect that in the stool as it meant that the banana was digested and

that was all that was left. I don't know if that's a good or bad thing for and

SCD child, though.

QUESTION

I started the intro diet last monday and on friday I started giving

riped bananas in many forms(i.e. pancakes). When starting the intro my

son did not have a stool till two days after monday and it was green

and goopy. Then two days after that I noticed that he was having more

of a texture in his stool so I knew it was working. Is his green goopy

stool a die-off?

Also in my family we actually cook bananas usually green bananas but

for my son I wait till it ripens. But in his stool I notice many strain

like material and I wonder if its from the bananas I cook for him and

if it still is ok to give him cooked banana?

[Guest guest]

>

> Yes, green and goopy is typical in the beginning as lots of changes

are happening and die-off is occurring.

>

> <<But in his stool I notice many strain

> like material and I wonder if its from the bananas I cook for him

and

> if it still is ok to give him cooked banana?>>

>

> I'm not exactly sure what you mean by " strain like material " .

Yes, you can give him cooked banana or uncooked banana..... as long

as it was very nicely ripe to begin with. The skins need to be

spotted all over with brown spots. And the type of banana you use is

important..... I don't know where you live but we need to use the

common Cavendish variety bananas (commonly sold in Europe and North

America). Plantains, for example, are not legal.

>

>

> Patti

Hi Patti, I meant string like. I think its the fiber from the bananas

I been giving him. And thanks for telling me about the platains. Im

from FT. stewart, ga.

>

> QUESTION

>

>

> I started the intro diet last monday and on friday I started

giving

> riped bananas in many forms(i.e. pancakes). When starting the

intro my

> son did not have a stool till two days after monday and it was

green

> and goopy. Then two days after that I noticed that he was having

more

> of a texture in his stool so I knew it was working. Is his green

goopy

> stool a die-off?

> Also in my family we actually cook bananas usually green bananas

but

> for my son I wait till it ripens. But in his stool I notice many

strain

> like material and I wonder if its from the bananas I cook for him

and

> if it still is ok to give him cooked banana?

>

>

>

>

>

>

[Guest guest]

that's the thing with pulmonary fibrosis

you can sit without using supplemental o2

as soon as you start moving the SAT drops

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: questionTo: Breathe-Support Date: Saturday, January 2, 2010, 9:56 AM

what does it mean when your oxygen level goes down when you are active and once you sit down it automatically goes back up into the high 90's. It happens at pulmonary rehab and the pt doesn't say why.

[Guest guest]

Basically it means that your lungs can't keep up with your bodies need for oxygen when you are exerting yourself. You don't say how low your sats drop but if they drop below 90 while you are active you should be using oxygen for exertion. Many of us can maintain resting sats above 90 without O2. That's not at all unusual with pulmonary fibrosis especially in the early to middle stages of the disease.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 9:56:43 AMSubject: question

what does it mean when your oxygen level goes down when you are active and once you sit down it automatically goes back up into the high 90's. It happens at pulmonary rehab and the pt doesn't say why.

[Guest guest]

MB,I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up in the 90's. Does that mean that I have to raise the level. When sitting down on 3,2 or nothing the oxygen stays in the high 90's.To: Breathe-Support Sent: Sat, January 2, 2010 12:45:00 PMSubject: Re: question

Basically it means that your lungs can't keep up with your bodies need for oxygen when you are exerting yourself. You don't say how low your sats drop but if they drop below 90 while you are active you should be using oxygen for exertion. Many of us can maintain resting sats above 90 without O2. That's not at all unusual with pulmonary fibrosis especially in the early to middle stages of the disease.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 9:56:43 AMSubject: question

what does it mean when your oxygen level goes down when you are active and once you sit down it automatically goes back up into the high 90's. It happens at pulmonary rehab and the pt doesn't say why.

[Guest guest]

If the saturation drops below 90% then you aren't getting enough oxygen

and require a greater flow. I can sit on the sofa with no oxygen and

maintain saturation in the mid 90's. However, I can't walk 20 feet

without it dropping below 90%. On the treadmill I use 5 lpm. So my use

varies greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.

>

> MB,

> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up in

the 90's. Does that mean that I have to raise the level. When sitting

down on 3,2 or nothing the oxygen stays in the high 90's.

>

>

>

>

>

> ________________________________

> From: Beth mbmurtha@...

> To: Breathe-Support

> Sent: Sat, January 2, 2010 12:45:00 PM

> Subject: Re: question

>

>

> Basically it means that your lungs can't keep up with your bodies need

for oxygen when you are exerting yourself. You don't say how low your

sats drop but if they drop below 90 while you are active you should be

using oxygen for exertion. Many of us can maintain resting sats above 90

without O2. That's not at all unusual with pulmonary fibrosis especially

in the early to middle stages of the disease.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

>

>

> ________________________________

> From: iltopaint iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sat, January 2, 2010 9:56:43 AM

> Subject: question

>

>

> what does it mean when your oxygen level goes down when you are active

and once you sit down it automatically goes back up into the high 90's.

> It happens at pulmonary rehab and the pt doesn't say why.

>

>

> __.._,_.___

> Reply to sender | Reply to group Messages in this topic (84)

> Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> Visit Your Group Start a New Topic

> MARKETPLACE

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>

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of Use

> .

>

[Guest guest]

thanks Bruce. Do you think if the hose to the oxygen is long that the right amount of oxygen is distributed.To: Breathe-Support Sent: Sat, January 2, 2010 1:42:03 PMSubject: Re: question

If the saturation drops below 90% then you aren't getting enough oxygen

and require a greater flow. I can sit on the sofa with no oxygen and

maintain saturation in the mid 90's. However, I can't walk 20 feet

without it dropping below 90%. On the treadmill I use 5 lpm. So my use

varies greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.

>

> MB,

> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up in

the 90's. Does that mean that I have to raise the level. When sitting

down on 3,2 or nothing the oxygen stays in the high 90's.

>

>

>

>

>

> ____________ _________ _________ __

> From: Beth mbmurtha@...

> To: Breathe-Support@ yahoogroups. com

> Sent: Sat, January 2, 2010 12:45:00 PM

> Subject: Re: question

>

>

> Basically it means that your lungs can't keep up with your bodies need

for oxygen when you are exerting yourself. You don't say how low your

sats drop but if they drop below 90 while you are active you should be

using oxygen for exertion. Many of us can maintain resting sats above 90

without O2. That's not at all unusual with pulmonary fibrosis especially

in the early to middle stages of the disease.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

>

>

> ____________ _________ _________ __

> From: iltopaint iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sat, January 2, 2010 9:56:43 AM

> Subject: question

>

>

> what does it mean when your oxygen level goes down when you are active

and once you sit down it automatically goes back up into the high 90's.

> It happens at pulmonary rehab and the pt doesn't say why.

>

>

> __.._,_.___

> Reply to sender | Reply to group Messages in this topic (84)

> Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> Visit Your Group Start a New Topic

> MARKETPLACE

> Going Green: Your Yahoo! Groups resource for green living

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms

of Use

> .

>

[Guest guest]

,

How long is the tubing? Right now I have about 70 feet of tubing hooked up to my concentrator which is set between 3 and 4 liters. My liter meter: http://www.tinashomecare.com/oxygen_liter_meters.htm

tells me I'm getting 3 liters. "They say" that for every 50 feet of tubing you lose about 1/2 a liter of flow. In general I've found that to be true.

The best test though of whether or not you are getting enough oxygen is your oximeter. You want to stay above 90. If you are below 90 for more than a minute or two you probably need to turn it up. If you are consistently below 90, please discuss this with your doctor. There are tests that can be ordered, 6 minute walk, 24 hour oximeter etc that can help determine what you should be using.

I've been told that as long as you only have restrictive lung disease you can't harm yourself by turning the oxygen up. HOWEVER if you have something like emphysema or asthma in addition to the pf, you must be extremely cautious about turning the oxygen up without your doctors approval. Having both types of lung disease (obstructive and restrictive) complicates the situation immensely.

Aside from that however the main thing is do what you need to do to keep yourself above 90. It really is that simple for most of us.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 2:01:27 PMSubject: Re: Re: question

thanks Bruce. Do you think if the hose to the oxygen is long that the right amount of oxygen is distributed.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 1:42:03 PMSubject: Re: question

If the saturation drops below 90% then you aren't getting enough oxygenand require a greater flow. I can sit on the sofa with no oxygen andmaintain saturation in the mid 90's. However, I can't walk 20 feetwithout it dropping below 90%. On the treadmill I use 5 lpm. So my usevaries greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.>> MB,> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up inthe 90's. Does that mean that I have to raise the level. When sittingdown on 3,2 or nothing the oxygen stays in the high 90's.> >>>>> ____________ _________ _________ __> From: Beth

mbmurtha@...> To: Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 12:45:00 PM> Subject: Re: question>>> Basically it means that your lungs can't keep up with your bodies needfor oxygen when you are exerting yourself. You don't say how low yoursats drop but if they drop below 90 while you are active you should beusing oxygen for exertion. Many of us can maintain resting sats above 90without O2. That's not at all unusual with pulmonary fibrosis especiallyin the early to middle stages of the disease.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>>>> ____________ _________ _________ __> From: iltopaint iltopaint (AT) yahoo (DOT)

com>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 9:56:43 AM> Subject: question>>> what does it mean when your oxygen level goes down when you are activeand once you sit down it automatically goes back up into the high 90's.> It happens at pulmonary rehab and the pt doesn't say why.>>> __.._,_.___> Reply to sender | Reply to group Messages in this topic (84)> Recent Activity: * New Members 4 * New Photos 6 * New Links 1> Visit Your Group Start a New Topic> MARKETPLACE> Going Green: Your Yahoo! Groups resource for green living>> Switch to: Text-Only, Daily Digest • Unsubscribe • Termsof Use> .>

[Guest guest]

/MB

I also use a liter miter but I'm on liquid and have a 75 foot hose and

am not experiencing any loss over that distance. However, I should also

mention my hose is one piece, not a 25 and 50 connected by swivel

connector. I'd advise everyone to have a liter miter. Also make sure you

keep a check on your connector from the hose to the cannula. Putting it

in water while in use to look for leaks is always good.

> >

> > MB,

> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up

in

> the 90's. Does that mean that I have to raise the level. When sitting

> down on 3,2 or nothing the oxygen stays in the high 90's.

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Beth mbmurtha@

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 12:45:00 PM

> > Subject: Re: question

> >

> >

> > Basically it means that your lungs can't keep up with your bodies

need

> for oxygen when you are exerting yourself. You don't say how low your

> sats drop but if they drop below 90 while you are active you should be

> using oxygen for exertion. Many of us can maintain resting sats above

90

> without O2. That's not at all unusual with pulmonary fibrosis

especially

> in the early to middle stages of the disease.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 9:56:43 AM

> > Subject: question

> >

> >

> > what does it mean when your oxygen level goes down when you are

active

> and once you sit down it automatically goes back up into the high

90's.

> > It happens at pulmonary rehab and the pt doesn't say why.

> >

> >

> > __.._,_.___

> > Reply to sender | Reply to group Messages in this topic (84)

> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > Visit Your Group Start a New Topic

> > MARKETPLACE

> > Going Green: Your Yahoo! Groups resource for green living

> >

> > Switch to: Text-Only, Daily Digest • Unsubscribe

• Terms

> of Use

> > .

> >

>

[Guest guest]

Bruce/MBThanks for the info. I don't have obstructive disease so I can turn it up if I have too. I'm always amazed on how high my oxygen level is on 2 or noneTo: Breathe-Support Sent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MB

I also use a liter miter but I'm on liquid and have a 75 foot hose and

am not experiencing any loss over that distance. However, I should also

mention my hose is one piece, not a 25 and 50 connected by swivel

connector. I'd advise everyone to have a liter miter. Also make sure you

keep a check on your connector from the hose to the cannula. Putting it

in water while in use to look for leaks is always good.

> >

> > MB,

> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up

in

> the 90's. Does that mean that I have to raise the level. When sitting

> down on 3,2 or nothing the oxygen stays in the high 90's.

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Beth mbmurtha@

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 12:45:00 PM

> > Subject: Re: question

> >

> >

> > Basically it means that your lungs can't keep up with your bodies

need

> for oxygen when you are exerting yourself. You don't say how low your

> sats drop but if they drop below 90 while you are active you should be

> using oxygen for exertion. Many of us can maintain resting sats above

90

> without O2. That's not at all unusual with pulmonary fibrosis

especially

> in the early to middle stages of the disease.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 9:56:43 AM

> > Subject: question

> >

> >

> > what does it mean when your oxygen level goes down when you are

active

> and once you sit down it automatically goes back up into the high

90's.

> > It happens at pulmonary rehab and the pt doesn't say why.

> >

> >

> > __.._,_.___

> > Reply to sender | Reply to group Messages in this topic (84)

> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > Visit Your Group Start a New Topic

> > MARKETPLACE

> > Going Green: Your Yahoo! Groups resource for green living

> >

> > Switch to: Text-Only, Daily Digest • Unsubscribe

• Terms

> of Use

> > .

> >

>

[Guest guest]

Beth! I have both types of lung disease (obstructive and restrictive)

I am on 3 to 4 liters.

My doctor never told me about how to modify my oxigen needs or anything like that.

Subject: Re: Re: questionTo: Breathe-Support Date: Saturday, January 2, 2010, 1:29 PM

,

How long is the tubing? Right now I have about 70 feet of tubing hooked up to my concentrator which is set between 3 and 4 liters. My liter meter: http://www.tinashom ecare.com/ oxygen_liter_ meters.htm

tells me I'm getting 3 liters. "They say" that for every 50 feet of tubing you lose about 1/2 a liter of flow. In general I've found that to be true.

The best test though of whether or not you are getting enough oxygen is your oximeter. You want to stay above 90. If you are below 90 for more than a minute or two you probably need to turn it up. If you are consistently below 90, please discuss this with your doctor. There are tests that can be ordered, 6 minute walk, 24 hour oximeter etc that can help determine what you should be using.

I've been told that as long as you only have restrictive lung disease you can't harm yourself by turning the oxygen up. HOWEVER if you have something like emphysema or asthma in addition to the pf, you must be extremely cautious about turning the oxygen up without your doctors approval. Having both types of lung disease (obstructive and restrictive) complicates the situation immensely.

Aside from that however the main thing is do what you need to do to keep yourself above 90. It really is that simple for most of us.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:01:27 PMSubject: Re: Re: question

thanks Bruce. Do you think if the hose to the oxygen is long that the right amount of oxygen is distributed.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 1:42:03 PMSubject: Re: question

If the saturation drops below 90% then you aren't getting enough oxygenand require a greater flow. I can sit on the sofa with no oxygen andmaintain saturation in the mid 90's. However, I can't walk 20 feetwithout it dropping below 90%. On the treadmill I use 5 lpm. So my usevaries greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.>> MB,> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up inthe 90's. Does that mean that I have to raise the level. When sittingdown on 3,2 or nothing the oxygen stays in the high 90's.> >>>>> ____________ _________ _________

__> To: Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 12:45:00 PM> Subject: Re: question>>> Basically it means that your lungs can't keep up with your bodies needfor oxygen when you are exerting yourself. You don't say how low yoursats drop but if they drop below 90 while you are active you should beusing oxygen for exertion. Many of us can maintain resting sats above 90without O2. That's not at all unusual with pulmonary fibrosis especiallyin the early to middle stages of the disease.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>>>> ____________ _________

_________ __> From: iltopaint iltopaint (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 9:56:43 AM> Subject: question>>> what does it mean when your oxygen level goes down when you are activeand once you sit down it automatically goes back up into the high 90's.> It happens at pulmonary rehab and the pt doesn't say why.>>> __.._,_.___> Reply to sender | Reply to group Messages in this topic (84)> Recent Activity: * New Members 4 * New Photos 6 * New Links 1> Visit Your Group Start a New Topic> MARKETPLACE> Going Green: Your Yahoo! Groups resource for green living>> Switch to: Text-Only, Daily Digest • Unsubscribe • Termsof Use> .>

[Guest guest]

,

You must get some guidance about adjusting your oxygen if you have both types of lung disease. With obstructive your body has difficulty getting rid of excess CO2 so getting enough oxygen and maintaining a healthy level of O2 and CO2 is much more complex.

I am not at all comfortable telling you what to do except to discuss the situation with your doctor and perhaps ask if you can meet with a respiratory therapist to figure out how to handle your specific situation.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 3:25:58 PMSubject: Re: Re: question

Beth! I have both types of lung disease (obstructive and restrictive)

I am on 3 to 4 liters.

My doctor never told me about how to modify my oxigen needs or anything like that.

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 1:29 PM

,

How long is the tubing? Right now I have about 70 feet of tubing hooked up to my concentrator which is set between 3 and 4 liters. My liter meter: http://www.tinashomecare.com/oxygen_liter_meters.htm

tells me I'm getting 3 liters. "They say" that for every 50 feet of tubing you lose about 1/2 a liter of flow. In general I've found that to be true.

The best test though of whether or not you are getting enough oxygen is your oximeter. You want to stay above 90. If you are below 90 for more than a minute or two you probably need to turn it up. If you are consistently below 90, please discuss this with your doctor. There are tests that can be ordered, 6 minute walk, 24 hour oximeter etc that can help determine what you should be using.

I've been told that as long as you only have restrictive lung disease you can't harm yourself by turning the oxygen up. HOWEVER if you have something like emphysema or asthma in addition to the pf, you must be extremely cautious about turning the oxygen up without your doctors approval. Having both types of lung disease (obstructive and restrictive) complicates the situation immensely.

Aside from that however the main thing is do what you need to do to keep yourself above 90. It really is that simple for most of us.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:01:27 PMSubject: Re: Re: question

thanks Bruce. Do you think if the hose to the oxygen is long that the right amount of oxygen is distributed.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 1:42:03 PMSubject: Re: question

If the saturation drops below 90% then you aren't getting enough oxygenand require a greater flow. I can sit on the sofa with no oxygen andmaintain saturation in the mid 90's. However, I can't walk 20 feetwithout it dropping below 90%. On the treadmill I use 5 lpm. So my usevaries greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.>> MB,> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up inthe 90's. Does that mean that I have to raise the level. When sittingdown on 3,2 or nothing the oxygen stays in the high 90's.> >>>>> ____________ _________ _________ __> To:

Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 12:45:00 PM> Subject: Re: question>>> Basically it means that your lungs can't keep up with your bodies needfor oxygen when you are exerting yourself. You don't say how low yoursats drop but if they drop below 90 while you are active you should beusing oxygen for exertion. Many of us can maintain resting sats above 90without O2. That's not at all unusual with pulmonary fibrosis especiallyin the early to middle stages of the disease.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>>>> ____________ _________ _________ __> From: iltopaint iltopaint (AT) yahoo (DOT) com>> To: Breathe-Support@

yahoogroups. com> Sent: Sat, January 2, 2010 9:56:43 AM> Subject: question>>> what does it mean when your oxygen level goes down when you are activeand once you sit down it automatically goes back up into the high 90's.> It happens at pulmonary rehab and the pt doesn't say why.>>> __.._,_.___> Reply to sender | Reply to group Messages in this topic (84)> Recent Activity: * New Members 4 * New Photos 6 * New Links 1> Visit Your Group Start a New Topic> MARKETPLACE> Going Green: Your Yahoo! Groups resource for green living>> Switch to: Text-Only, Daily Digest • Unsubscribe • Termsof Use> .>

[Guest guest]

You have to be very careful about any modification and should only do it

with doctor's advice. Now, it does help the doctor if you can tell him

what your saturations are doing. But, generally, with an obstructive

disease you'll have to be more careful not to turn your oxygen too high.

> >

> > MB,

> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up

in

> the 90's. Does that mean that I have to raise the level. When sitting

> down on 3,2 or nothing the oxygen stays in the high 90's.

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Beth mbmurtha@

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 12:45:00 PM

> > Subject: Re: question

> >

> >

> > Basically it means that your lungs can't keep up with your bodies

need

> for oxygen when you are exerting yourself. You don't say how low your

> sats drop but if they drop below 90 while you are active you should be

> using oxygen for exertion. Many of us can maintain resting sats above

90

> without O2. That's not at all unusual with pulmonary fibrosis

especially

> in the early to middle stages of the disease.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 9:56:43 AM

> > Subject: question

> >

> >

> > what does it mean when your oxygen level goes down when you are

active

> and once you sit down it automatically goes back up into the high

90's.

> > It happens at pulmonary rehab and the pt doesn't say why.

> >

> >

> > __.._,_.___

> > Reply to sender | Reply to group Messages in this topic (84)

> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > Visit Your Group Start a New Topic

> > MARKETPLACE

> > Going Green: Your Yahoo! Groups resource for green living

> >

> > Switch to: Text-Only, Daily Digest • Unsubscribe

• Terms

> of Use

> > .

> >

>

[Guest guest]

MB

didn't Ginger have a problem with obstructive and restrictive

i was so new at the time i didn't know what the discussion was about

actually, i didn't understand it at the time

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: questionTo: Breathe-Support Date: Saturday, January 2, 2010, 3:45 PM

,

You must get some guidance about adjusting your oxygen if you have both types of lung disease. With obstructive your body has difficulty getting rid of excess CO2 so getting enough oxygen and maintaining a healthy level of O2 and CO2 is much more complex.

I am not at all comfortable telling you what to do except to discuss the situation with your doctor and perhaps ask if you can meet with a respiratory therapist to figure out how to handle your specific situation.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: laura getz <lr_getz (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 3:25:58 PMSubject: Re: Re: question

Beth! I have both types of lung disease (obstructive and restrictive)

I am on 3 to 4 liters.

My doctor never told me about how to modify my oxigen needs or anything like that.

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 1:29 PM

,

How long is the tubing? Right now I have about 70 feet of tubing hooked up to my concentrator which is set between 3 and 4 liters. My liter meter: http://www.tinashom ecare.com/ oxygen_liter_ meters.htm

tells me I'm getting 3 liters. "They say" that for every 50 feet of tubing you lose about 1/2 a liter of flow. In general I've found that to be true.

The best test though of whether or not you are getting enough oxygen is your oximeter. You want to stay above 90. If you are below 90 for more than a minute or two you probably need to turn it up. If you are consistently below 90, please discuss this with your doctor. There are tests that can be ordered, 6 minute walk, 24 hour oximeter etc that can help determine what you should be using.

I've been told that as long as you only have restrictive lung disease you can't harm yourself by turning the oxygen up. HOWEVER if you have something like emphysema or asthma in addition to the pf, you must be extremely cautious about turning the oxygen up without your doctors approval. Having both types of lung disease (obstructive and restrictive) complicates the situation immensely.

Aside from that however the main thing is do what you need to do to keep yourself above 90. It really is that simple for most of us.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:01:27 PMSubject: Re: Re: question

thanks Bruce. Do you think if the hose to the oxygen is long that the right amount of oxygen is distributed.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 1:42:03 PMSubject: Re: question

If the saturation drops below 90% then you aren't getting enough oxygenand require a greater flow. I can sit on the sofa with no oxygen andmaintain saturation in the mid 90's. However, I can't walk 20 feetwithout it dropping below 90%. On the treadmill I use 5 lpm. So my usevaries greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.>> MB,> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up inthe 90's. Does that mean that I have to raise the level. When sittingdown on 3,2 or nothing the oxygen stays in the high 90's.> >>>>> ____________ _________ _________ __> To:

Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 12:45:00 PM> Subject: Re: question>>> Basically it means that your lungs can't keep up with your bodies needfor oxygen when you are exerting yourself. You don't say how low yoursats drop but if they drop below 90 while you are active you should beusing oxygen for exertion. Many of us can maintain resting sats above 90without O2. That's not at all unusual with pulmonary fibrosis especiallyin the early to middle stages of the disease.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>>>> ____________ _________ _________ __> From: iltopaint iltopaint (AT) yahoo (DOT) com>> To: Breathe-Support@

yahoogroups. com> Sent: Sat, January 2, 2010 9:56:43 AM> Subject: question>>> what does it mean when your oxygen level goes down when you are activeand once you sit down it automatically goes back up into the high 90's.> It happens at pulmonary rehab and the pt doesn't say why.>>> __.._,_.___> Reply to sender | Reply to group Messages in this topic (84)> Recent Activity: * New Members 4 * New Photos 6 * New Links 1> Visit Your Group Start a New Topic> MARKETPLACE> Going Green: Your Yahoo! Groups resource for green living>> Switch to: Text-Only, Daily Digest • Unsubscribe • Termsof Use> .>

[Guest guest]

Joyce,

We don't know that for sure but based on what happened to her when she turned her oxygen up, it seems likely. We really won't ever know for sure.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 10:14:43 PMSubject: Re: Re: question

MB

didn't Ginger have a problem with obstructive and restrictive

i was so new at the time i didn't know what the discussion was about

actually, i didn't understand it at the time

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 1:29 PM

,

How long is the tubing? Right now I have about 70 feet of tubing hooked up to my concentrator which is set between 3 and 4 liters. My liter meter: http://www.tinashom ecare.com/ oxygen_liter_ meters.htm

tells me I'm getting 3 liters. "They say" that for every 50 feet of tubing you lose about 1/2 a liter of flow. In general I've found that to be true.

The best test though of whether or not you are getting enough oxygen is your oximeter. You want to stay above 90. If you are below 90 for more than a minute or two you probably need to turn it up. If you are consistently below 90, please discuss this with your doctor. There are tests that can be ordered, 6 minute walk, 24 hour oximeter etc that can help determine what you should be using.

I've been told that as long as you only have restrictive lung disease you can't harm yourself by turning the oxygen up. HOWEVER if you have something like emphysema or asthma in addition to the pf, you must be extremely cautious about turning the oxygen up without your doctors approval. Having both types of lung disease (obstructive and restrictive) complicates the situation immensely.

Aside from that however the main thing is do what you need to do to keep yourself above 90. It really is that simple for most of us.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:01:27 PMSubject: Re: Re: question

thanks Bruce. Do you think if the hose to the oxygen is long that the right amount of oxygen is distributed.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 1:42:03 PMSubject: Re: question

If the saturation drops below 90% then you aren't getting enough oxygenand require a greater flow. I can sit on the sofa with no oxygen andmaintain saturation in the mid 90's. However, I can't walk 20 feetwithout it dropping below 90%. On the treadmill I use 5 lpm. So my usevaries greatly from 0 to 5 lpm. Normal light activity would be 3 lpm.>> MB,> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up inthe 90's. Does that mean that I have to raise the level. When sittingdown on 3,2 or nothing the oxygen stays in the high 90's.> >>>>> ____________ _________ _________ __> To:

Breathe-Support@ yahoogroups. com> Sent: Sat, January 2, 2010 12:45:00 PM> Subject: Re: question>>> Basically it means that your lungs can't keep up with your bodies needfor oxygen when you are exerting yourself. You don't say how low yoursats drop but if they drop below 90 while you are active you should beusing oxygen for exertion. Many of us can maintain resting sats above 90without O2. That's not at all unusual with pulmonary fibrosis especiallyin the early to middle stages of the disease.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>>>> ____________ _________ _________ __> From: iltopaint iltopaint (AT) yahoo (DOT) com>> To: Breathe-Support@

yahoogroups. com> Sent: Sat, January 2, 2010 9:56:43 AM> Subject: question>>> what does it mean when your oxygen level goes down when you are activeand once you sit down it automatically goes back up into the high 90's.> It happens at pulmonary rehab and the pt doesn't say why.>>> __.._,_.___> Reply to sender | Reply to group Messages in this topic (84)> Recent Activity: * New Members 4 * New Photos 6 * New Links 1> Visit Your Group Start a New Topic> MARKETPLACE> Going Green: Your Yahoo! Groups resource for green living>> Switch to: Text-Only, Daily Digest • Unsubscribe • Termsof Use> .>

[Guest guest]

Joyce

My understanding was that she turned her oxygen way up, although I might

be wrong. When we say no risk of a restrictive patient getting too much,

we're saying that within reason. But if you're at 90% on 3 lpm that

doesn't mean to turn it to 6 or 7 lpm so you reach 99%.

> >>>

> >>> MB,

> >>> I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay

up in

> >>the 90's. Does that mean that I have to raise the level. When

sitting

> >>down on 3,2 or nothing the oxygen stays in the high 90's.

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> ____________ _________ _________ __

> >>> From: Beth mbmurtha@

> >>> To: Breathe-Support@ yahoogroups. com

> >>> Sent: Sat, January 2, 2010 12:45:00 PM

> >>> Subject: Re: question

> >>>

> >>>

> >>> Basically it means that your lungs can't keep up with your bodies

need

> >>for oxygen when you are exerting yourself. You don't say how low

your

> >>sats drop but if they drop below 90 while you are active you should

be

> >>using oxygen for exertion. Many of us can maintain resting sats

above 90

> >>without O2. That's not at all unusual with pulmonary fibrosis

especially

> >>in the early to middle stages of the disease.

> >>>

> >>> Beth

> >>> Moderator

> >>> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> ____________ _________ _________ __

> >>> From: iltopaint iltopaint (AT) yahoo (DOT) com>

> >>> To: Breathe-Support@ yahoogroups. com

> >>> Sent: Sat, January 2, 2010 9:56:43 AM

> >>> Subject: question

> >>>

> >>>

> >>> what does it mean when your oxygen level goes down when you are

active

> >>and once you sit down it automatically goes back up into the high

90's.

> >>> It happens at pulmonary rehab and the pt doesn't say why.

> >>>

> >>>

> >>> __.._,_.___

> >>> Reply to sender | Reply to group Messages in this topic (84)

> >>> Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> >>> Visit Your Group Start a New Topic

> >>> MARKETPLACE

> >>> Going Green: Your Yahoo! Groups resource for green living

> >>>

> >>> Switch to: Text-Only, Daily Digest • Unsubscribe

• Terms

> >>of Use

> >>> .

> >>>

> >>

> >>

> >>

> >

>

[Guest guest]

Bruce/MBDoes your heart rate go up when you are up and around?To: Breathe-Support Sent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MB

I also use a liter miter but I'm on liquid and have a 75 foot hose and

am not experiencing any loss over that distance. However, I should also

mention my hose is one piece, not a 25 and 50 connected by swivel

connector. I'd advise everyone to have a liter miter. Also make sure you

keep a check on your connector from the hose to the cannula. Putting it

in water while in use to look for leaks is always good.

> >

> > MB,

> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up

in

> the 90's. Does that mean that I have to raise the level. When sitting

> down on 3,2 or nothing the oxygen stays in the high 90's.

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Beth mbmurtha@

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 12:45:00 PM

> > Subject: Re: question

> >

> >

> > Basically it means that your lungs can't keep up with your bodies

need

> for oxygen when you are exerting yourself. You don't say how low your

> sats drop but if they drop below 90 while you are active you should be

> using oxygen for exertion. Many of us can maintain resting sats above

90

> without O2. That's not at all unusual with pulmonary fibrosis

especially

> in the early to middle stages of the disease.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 9:56:43 AM

> > Subject: question

> >

> >

> > what does it mean when your oxygen level goes down when you are

active

> and once you sit down it automatically goes back up into the high

90's.

> > It happens at pulmonary rehab and the pt doesn't say why.

> >

> >

> > __.._,_.___

> > Reply to sender | Reply to group Messages in this topic (84)

> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > Visit Your Group Start a New Topic

> > MARKETPLACE

> > Going Green: Your Yahoo! Groups resource for green living

> >

> > Switch to: Text-Only, Daily Digest • Unsubscribe

• Terms

> of Use

> > .

> >

>

[Guest guest]

,

Yes it does. My resting heart rate is in the low 70's. My heart rate jumps into the high 80's low 90's when I move around at home. When I exercise it moves into the 120's. This would not be normal for someone else but for me it's fine.

When I was diagnosed with the lung disease in 2006 I was also in congestive heart failure. My heart recovered from that but my speedy heart rate is a consequence of that bout of chf.

Are you concerned about your heart rate? Some increase when we are active is to be expected as our hearts try to get oxygen around our bodies. Since our lungs provide a limited amount, our heart tries to compensate by beating faster. That underscores the importance of keeping our sats above 90, to lessen the strain on our heart.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, January 4, 2010 7:31:47 AMSubject: Re: Re: question

Bruce/MBDoes your heart rate go up when you are up and around?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MBI also use a liter miter but I'm on liquid and have a 75 foot hose andam not experiencing any loss over that distance. However, I should alsomention my hose is one piece, not a 25 and 50 connected by swivelconnector. I'd advise everyone to have a liter miter. Also make sure youkeep a check on your connector from the hose to the cannula. Putting itin water while in use to look for leaks is always good.> >> > MB,> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay upin> the 90's. Does that mean that I have to raise the level. When sitting> down on 3,2

or nothing the oxygen stays in the high 90's.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 12:45:00 PM> > Subject: Re: question> >> >> > Basically it means that your lungs can't keep up with your bodiesneed> for oxygen when you are exerting yourself. You don't say how low your> sats drop but if they drop below 90 while you are active you should be> using oxygen for exertion. Many of us can maintain resting sats above90> without O2. That's not at all unusual with pulmonary fibrosisespecially> in the early to middle stages of the disease.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis

11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: iltopaint iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 9:56:43 AM> > Subject: question> >> >> > what does it mean when your oxygen level goes down when you areactive> and once you sit down it automatically goes back up into the high90's.> > It happens at pulmonary rehab and the pt doesn't say why.> >> >> > __.._,_.___> > Reply to sender | Reply to group Messages in this topic (84)> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1> > Visit Your Group Start a New Topic> > MARKETPLACE> > Going Green: Your Yahoo! Groups resource for green living>

>> > Switch to: Text-Only, Daily Digest • Unsubscribe• Terms> of Use> > .> >>

[Guest guest]

,

Yes it does. My resting heart rate is in the low 70's. My heart rate jumps into the high 80's low 90's when I move around at home. When I exercise it moves into the 120's. This would not be normal for someone else but for me it's fine.

When I was diagnosed with the lung disease in 2006 I was also in congestive heart failure. My heart recovered from that but my speedy heart rate is a consequence of that bout of chf.

Are you concerned about your heart rate? Some increase when we are active is to be expected as our hearts try to get oxygen around our bodies. Since our lungs provide a limited amount, our heart tries to compensate by beating faster. That underscores the importance of keeping our sats above 90, to lessen the strain on our heart.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, January 4, 2010 7:31:47 AMSubject: Re: Re: question

Bruce/MBDoes your heart rate go up when you are up and around?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MBI also use a liter miter but I'm on liquid and have a 75 foot hose andam not experiencing any loss over that distance. However, I should alsomention my hose is one piece, not a 25 and 50 connected by swivelconnector. I'd advise everyone to have a liter miter. Also make sure youkeep a check on your connector from the hose to the cannula. Putting itin water while in use to look for leaks is always good.> >> > MB,> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay upin> the 90's. Does that mean that I have to raise the level. When sitting> down on 3,2

or nothing the oxygen stays in the high 90's.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 12:45:00 PM> > Subject: Re: question> >> >> > Basically it means that your lungs can't keep up with your bodiesneed> for oxygen when you are exerting yourself. You don't say how low your> sats drop but if they drop below 90 while you are active you should be> using oxygen for exertion. Many of us can maintain resting sats above90> without O2. That's not at all unusual with pulmonary fibrosisespecially> in the early to middle stages of the disease.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis

11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: iltopaint iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 9:56:43 AM> > Subject: question> >> >> > what does it mean when your oxygen level goes down when you areactive> and once you sit down it automatically goes back up into the high90's.> > It happens at pulmonary rehab and the pt doesn't say why.> >> >> > __.._,_.___> > Reply to sender | Reply to group Messages in this topic (84)> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1> > Visit Your Group Start a New Topic> > MARKETPLACE> > Going Green: Your Yahoo! Groups resource for green living>

>> > Switch to: Text-Only, Daily Digest • Unsubscribe• Terms> of Use> > .> >>

[Guest guest]

heart rate:

moving around at home it jumps to the 90's, SAT is in the 90's and not using supplemental O2

while exercising with supplemental O2, heart rate jumps to about 115 - 120, SAT stays in upper 90's

never had CHF

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: questionTo: Breathe-Support Date: Monday, January 4, 2010, 8:08 AM

,

Yes it does. My resting heart rate is in the low 70's. My heart rate jumps into the high 80's low 90's when I move around at home. When I exercise it moves into the 120's. This would not be normal for someone else but for me it's fine.

When I was diagnosed with the lung disease in 2006 I was also in congestive heart failure. My heart recovered from that but my speedy heart rate is a consequence of that bout of chf.

Are you concerned about your heart rate? Some increase when we are active is to be expected as our hearts try to get oxygen around our bodies. Since our lungs provide a limited amount, our heart tries to compensate by beating faster. That underscores the importance of keeping our sats above 90, to lessen the strain on our heart.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 4, 2010 7:31:47 AMSubject: Re: Re: question

Bruce/MBDoes your heart rate go up when you are up and around?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MBI also use a liter miter but I'm on liquid and have a 75 foot hose andam not experiencing any loss over that distance. However, I should alsomention my hose is one piece, not a 25 and 50 connected by swivelconnector. I'd advise everyone to have a liter miter. Also make sure youkeep a check on your connector from the hose to the cannula. Putting itin water while in use to look for leaks is always good.> >> > MB,> > I am on oxygen (3 ltrs) for exertion but the

oxygen doesn't stay upin> the 90's. Does that mean that I have to raise the level. When sitting> down on 3,2 or nothing the oxygen stays in the high 90's.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 12:45:00 PM> > Subject: Re: question> >> >> > Basically it means that your lungs can't keep up with your bodiesneed> for oxygen when you are exerting yourself. You don't say how low your> sats drop but if they drop below 90 while you are active you should be> using oxygen for exertion. Many of us can maintain resting sats above90> without O2. That's not at all unusual with pulmonary fibrosisespecially> in the early to middle stages of

the disease.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: iltopaint iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 9:56:43 AM> > Subject: question> >> >> > what does it mean when your oxygen level goes down when you areactive> and once you sit down it automatically goes back up into the high90's.> > It happens at pulmonary rehab and the pt doesn't say why.> >> >> > __.._,_.___> > Reply to sender | Reply to group Messages in this topic (84)> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1> > Visit Your Group Start a New

Topic> > MARKETPLACE> > Going Green: Your Yahoo! Groups resource for green living> >> > Switch to: Text-Only, Daily Digest • Unsubscribe• Terms> of Use> > .> >>