Re: Re: question regarding meds and O2

[Guest guest]

Bruce, does your sats in the high 90's when on oxygen and when you do things does the sats go down even if you are on oxygen.To: Breathe-Support Sent: Wed, December 16, 2009 10:56:19 AMSubject: Re: question regarding

meds and O2

You keep referring to an MPD and perhaps thats a VA term or something

but its not a term I'm familiar with.

I would discuss any oxygen use with the U of Chicago doctor. A

prescription would be needed and just pulling out an old concentrator

with dirty filters and not checked through wouldn't be a good idea.

Furthermore you're more likely to need it on exertion than sitting at

home. If you haven't had an overnight oximeter test you should have one

done. What is your oximeter showing? The goal is to keep oxygen levels

over 90%. That simple. With your mucus and other things you describe

going any further than just doing that is only something your

pulmonologist could recommend.

>

>

> From: Jerry Brown jerryb888@.. .

> Subject: question regarding meds and O2

> To: Breathe-Support@ yahoogroups. com

> Date: Monday, December 14, 2009, 2:47 AM

>

>

> Â

>

>

>

>

>

>

>

>

> ,

> Â

> Only if your O2 blood level is well above the 90% mark while at rest

or engaged in lite activity should you consider not using supplemental

O2, and even then discuss that with your pulmonologist. Besides the

possible harm to your heart due to an increased load as it tries to pump

oxygen throughout your body, you would certainly feel more tired and

much sooner in the day, as your recovery time from exertion

would be greater.

> Â

> That being said, almost 4 years ago, I was able to loose 50 pounds

through exercise and good eating habits, and the benefit was that I was

able to get off O2 for the time being. But I never shyed away from using

O2 if I needed it for getting in relly good shape.. Using the O2 meter

constantly as I exercised, I could work out with confidence. If during

exercise you find your O2 level dropping below 90%, adjust the O2 upward

and keep going. Our need for oxygen varies with activity, and thus our

O2 supplementation needs will vary. The more you can stay active, the

better your chances for needing less O2 supplementation. But in the mean

time, I strongly suggest staying the course.

> Â

> As for Cellcept, I don't take it, but you may be having some

side-effects which may include anxiety, tiredness, upset stomach, or

headache. These side effects may increase with dosage, but doÂ

consult with your pulmonoligist first before taking the cold turkey

route on meds. Unfortunately treatment for pf is limited, but Â

hopefully one day soon, we'll have better options So hang in there

and do all you can for yourself, if and until that day comes. Â

> Jerry/Mississippi/ 54/IPF/dx April 05

> Â

> Â

>

>

> Who believes that hard times help us appreciate the good times even

more.

>

[Guest guest]

thanks again.That's what my sats do too. I go to pulmonary rehab tomorrow so I hope to learn from it. What's the 6 min walk all about? Is it with oxygen?To: Breathe-Support Sent: Wed, December 16, 2009 1:42:34 PMSubject: Re: question regarding meds and O2

My saturations very greatly at different times. But, a typical situation

I could sit at 2 lpm and 96%. If I walked around the house slowly at 2

lpm I would drop to around 90%. If I tried to do anything like unload

the dishwasher or put laundry in then they would drop quickly to around

85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%

or for heavier activity to 4 lpm.

Your saturations will drop when you do activity. How much depends on the

person. But, if I tried to do the activities I mentioned above without

oxygen, my saturations would quickly drop into the 70's and if I

continued then lower. Therefore, I don't do it without adequate oxygen.

There are some things that I can't get enough oxygen period so just

can't do. If I were to try to lift a very heavy item or push one across

the floor, my saturations would drop below 90% even if I was on 6 lpm.

> >

> >

> > From: Jerry Brown jerryb888@ .

> > Subject: question regarding meds and O2

> > To: Breathe-Support@ yahoogroups. com

> > Date: Monday, December 14, 2009, 2:47 AM

> >

> >

> > Â

> >

> >

> >

> >

> >

> >

> >

> >

> > ,

> > Â

> > Only if your O2 blood level is well above the 90% mark while at rest

> or engaged in lite activity should you consider not using supplemental

> O2, and even then discuss that with your pulmonologist. Besides the

> possible harm to your heart due to an increased load as it tries to

pump

> oxygen throughout your body, you would certainly feel more tiredÂ

and

> much sooner in the day, as your recovery time from

exertion

> would be greater.

> > Â

> > That being said, almost 4 years ago, I was able to loose 50 pounds

> through exercise and good eating habits, and the benefit was that I

was

> able to get off O2 for the time being. But I never shyed away from

using

> O2 if I needed it for getting in relly good shape. Using the O2 meter

> constantly as I exercised, I could work out with confidence. If during

> exercise you find your O2 level dropping below 90%, adjust the O2

upward

> and keep going. Our need for oxygen varies with activity, and thus our

> O2 supplementation needs will vary. The more you can stay active, the

> better your chances for needing less O2 supplementation. But in the

mean

> time, I strongly suggest staying the course.

> > Â

> > As for Cellcept, I don't take it, but you may be having some

> side-effects which may include anxiety, tiredness, upset stomach, or

> headache. These side effects may increase with dosage, but doÂ

> consult with your pulmonoligist first before taking the cold turkey

> route on meds. Unfortunately treatment for pf is limited, but Â

> hopefully one day soon, we'll have better options So hang in

there

> and do all you can for yourself, if and until that day comes. Â

> > Jerry/Mississippi/ 54/IPF/dx April 05

> > Â

> > Â

> >

> >

> > Who believes that hard times help us appreciate the good times even

> more.

> >

>

[Guest guest]

cees I just loged on....Love this post. It explained a lot to ,me thanks

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Wed, December 16, 2009 2:47:06 PMSubject: Re: question regarding meds and O2

,I'm sorry but I didn't understand much of what you wrote here. Could you decipher it for me? I always told my students that if one person didn't understand & speaks up, there are usually several others who also don't understand but didn't speak up.What exactly is an MPD? I think it's a dr but what kind? Somebody (you? other?) also mentioned their MDP (or MPD?) & their VA??? I'm lost.You said you doubt if your MDP would let you rent oxygen, but did he say that? Because you said you were getting conflicting advice.You inherited a condenser and you use a meter but you don't use oxygen. I don't understand. Oh, wait. By meter you mean our finger pulse oximeters, don't you? Sorry. Think I get that part now.Just drinking fluids when you exercise raises your sats? Really? That works? Why would any doctor tell you NOT to drink water? That doesn't make sense. And how can drinking water

help or hurt your stomach acid?Can you help me understand what you were saying? Sorry if I'm being really dense. Cees, S CalifIPF/UIP 10/08> > > From: Jerry Brown <jerryb888@. ..>> Subject: question

regarding meds and O2> To: Breathe-Support@ yahoogroups. com> Date: Monday, December 14, 2009, 2:47 AM> > >  > > > > > > > > > ,>  > Only if your O2 blood level is well above the 90% mark while at rest or engaged in lite activity should you consider not using supplemental O2, and even then discuss that with your pulmonologist. Besides the possible harm to your heart due to an increased load as it tries to pump oxygen throughout your body, you would certainly feel more tired and much sooner in the day, as your recovery time from exertion would be greater. >  > That being said, almost 4 years ago, I was able to loose 50 pounds through exercise and

good eating habits, and the benefit was that I was able to get off O2 for the time being. But I never shyed away from using O2 if I needed it for getting in relly good shape. Using the O2 meter constantly as I exercised, I could work out with confidence. If during exercise you find your O2 level dropping below 90%, adjust the O2 upward and keep going. Our need for oxygen varies with activity, and thus our O2 supplementation needs will vary. The more you can stay active, the better your chances for needing less O2 supplementation. But in the mean time, I strongly suggest staying the course.>  > As for Cellcept, I don't take it, but you may be having some side-effects which may include anxiety, tiredness, upset stomach, or headache. These side effects may increase with dosage, but do consult with your pulmonoligist first before taking the cold turkey route on meds. Unfortunately treatment for pf is limited, but

 hopefully one day soon, we'll have better options So hang in there and do all you can for yourself, if and until that day comes.  > Jerry/Mississippi/ 54/IPF/dx April 05>  >  > > > Who believes that hard times help us appreciate the good times even more.>

[Guest guest]

,

If you're currently using oxygen it's not likely they would have you do a 6 minute walk without it. I've seen different protocol used in different places but they will probably have you start walking with whatever oxygen setting you would normally use and then monitor your sats while you are walking. If you drop below 90 during the walk they will turn your oxygen up until you are at a setting where you stay above 90.

They are looking for two things, what your oxygen needs are during the walk and how far you can walk in 6 minutes.

You will learn alot from the results!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, December 16, 2009 5:01:20 PMSubject: Re: Re: question regarding meds and O2

thanks again.That's what my sats do too. I go to pulmonary rehab tomorrow so I hope to learn from it. What's the 6 min walk all about? Is it with oxygen?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 16, 2009 1:42:34 PMSubject: Re: question regarding meds and O2

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you

consider not using supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus

our> O2 supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times

even> more.> >>

[Guest guest]

Thanks Beth. I'm looking forward to tomorrow. I used to be a power walker and I miss walking alot. Of course, carrying the oxygen container around won't be much fun but I do want to walk again.To: Breathe-Support Sent: Wed, December 16, 2009 5:33:05 PMSubject: Re: Re: question regarding meds and O2

,

If you're currently using oxygen it's not likely they would have you do a 6 minute walk without it. I've seen different protocol used in different places but they will probably have you start walking with whatever oxygen setting you would normally use and then monitor your sats while you are walking. If you drop below 90 during the walk they will turn your oxygen up until you are at a setting where you stay above 90.

They are looking for two things, what your oxygen needs are during the walk and how far you can walk in 6 minutes.

You will learn alot from the results!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 16, 2009 5:01:20 PMSubject: Re: Re: question regarding meds and O2

thanks again.That's what my sats do too. I go to pulmonary rehab tomorrow so I hope to learn from it. What's the 6 min walk all about? Is it with oxygen?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 16, 2009 1:42:34 PMSubject: Re: question regarding meds and O2

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you

consider not using supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus

our> O2 supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache.. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times

even> more.> >>

[Guest guest]

cees

it didn't make sense to me either

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: question regarding meds and O2To: Breathe-Support Date: Wednesday, December 16, 2009, 2:47 PM

,I'm sorry but I didn't understand much of what you wrote here. Could you decipher it for me? I always told my students that if one person didn't understand & speaks up, there are usually several others who also don't understand but didn't speak up.What exactly is an MPD? I think it's a dr but what kind? Somebody (you? other?) also mentioned their MDP (or MPD?) & their VA??? I'm lost.You said you doubt if your MDP would let you rent oxygen, but did he say that? Because you said you were getting conflicting advice.You inherited a condenser and you use a meter but you don't use oxygen. I don't understand. Oh, wait. By meter you mean our finger pulse oximeters, don't you? Sorry. Think I get that part now.Just drinking fluids when you exercise raises your sats? Really? That works? Why would any doctor tell you NOT to drink water? That doesn't make sense. And how can drinking

water help or hurt your stomach acid?Can you help me understand what you were saying? Sorry if I'm being really dense. Cees, S CalifIPF/UIP 10/08> > > From: Jerry Brown <jerryb888@. ..>>

Subject: question regarding meds and O2> To: Breathe-Support@ yahoogroups. com> Date: Monday, December 14, 2009, 2:47 AM> > >  > > > > > > > > > ,>  > Only if your O2 blood level is well above the 90% mark while at rest or engaged in lite activity should you consider not using supplemental O2, and even then discuss that with your pulmonologist. Besides the possible harm to your heart due to an increased load as it tries to pump oxygen throughout your body, you would certainly feel more tired and much sooner in the day, as your recovery time from exertion would be greater. >  > That being said,

almost 4 years ago, I was able to loose 50 pounds through exercise and good eating habits, and the benefit was that I was able to get off O2 for the time being. But I never shyed away from using O2 if I needed it for getting in relly good shape. Using the O2 meter constantly as I exercised, I could work out with confidence. If during exercise you find your O2 level dropping below 90%, adjust the O2 upward and keep going. Our need for oxygen varies with activity, and thus our O2 supplementation needs will vary. The more you can stay active, the better your chances for needing less O2 supplementation. But in the mean time, I strongly suggest staying the course.>  > As for Cellcept, I don't take it, but you may be having some side-effects which may include anxiety, tiredness, upset stomach, or headache. These side effects may increase with dosage, but do consult with your pulmonoligist first before taking the cold turkey route

on meds. Unfortunately treatment for pf is limited, but  hopefully one day soon, we'll have better options So hang in there and do all you can for yourself, if and until that day comes.  > Jerry/Mississippi/ 54/IPF/dx April 05>  >  > > > Who believes that hard times help us appreciate the good times even more.>

[Guest guest]

you walk for 6 minutes, the rt's monitor you oxygen rate, and how far you walk

I am still able to do it on room air, some people need to do it with oxygen

depends on your condition

even though i use room air, they have a wheelchair and oxygen right there just in case.......

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: question regarding meds and O2To: Breathe-Support Date: Wednesday, December 16, 2009, 5:01 PM

thanks again.That's what my sats do too. I go to pulmonary rehab tomorrow so I hope to learn from it. What's the 6 min walk all about? Is it with oxygen?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 16, 2009 1:42:34 PMSubject: Re: question regarding meds and O2

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark

while at rest> or engaged in lite activity should you consider not using supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and

keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> >

Who believes that hard times help us appreciate the good times even> more.> >>

[Guest guest]

No good excuse. I returned from the ER this week with some serious problems. I dropped one of my meds and this led to reaction much like a withdrawal from booze. I did not think this was possible. MDP means lung Dr to me. My MI VA has a MPD on staff. He works for the VA with some agreement the U of Michigan. He is a U of M MDP

My local MDP told me my IPF was caused by GERD and I should avoid eating or drinking 2 hrs before bedtime. As I have IPF and oxygen levels that drop to 84 in the morning or through the day . I can drop to 89 to 91 when I am doing exercise. Water or fluids are most important in maintaining my oxygen level or in clearing my lungs. I can raise my oxygen levels by drinking water. I can raise my oxygen levels using diafram breathing. I can probably use water or fuils as a subsitute for mucus relief pills.

I checkout water and stomach acid months ago. I can not remember what I found. I think it was a difference between thet PH of the stomach and water. Water does not give me GERD and my esopahagus is narrower due to the removal of a herrnia. I doubt if GERD caused my initial IPF.

My breathing function tests are still good for IPF. Usually my local MDP says NO to my requests as there is some question about ashma and allerigies between this doc and other docs. He said I could not use Advair. This part is a mystery to me.

I must remove a lot of phlem from lungs each day and this gives me an acid stomach. I do not need coughing to bring up phlem any longer. It also will move up after a small intake of water.

Burns

Subject: Re: question regarding meds and O2To: Breathe-Support Date: Wednesday, December 16, 2009, 2:47 PM

,I'm sorry but I didn't understand much of what you wrote here. Could you decipher it for me? I always told my students that if one person didn't understand & speaks up, there are usually several others who also don't understand but didn't speak up.What exactly is an MPD? I think it's a dr but what kind? Somebody (you? other?) also mentioned their MDP (or MPD?) & their VA??? I'm lost.You said you doubt if your MDP would let you rent oxygen, but did he say that? Because you said you were getting conflicting advice.You inherited a condenser and you use a meter but you don't use oxygen. I don't understand. Oh, wait. By meter you mean our finger pulse oximeters, don't you? Sorry. Think I get that part now.Just drinking fluids when you exercise raises your sats? Really? That works? Why would any doctor tell you NOT to drink water? That doesn't make sense. And how can drinking

water help or hurt your stomach acid?Can you help me understand what you were saying? Sorry if I'm being really dense. Cees, S CalifIPF/UIP 10/08> > > From: Jerry Brown <jerryb888@. ..>>

Subject: question regarding meds and O2> To: Breathe-Support@ yahoogroups. com> Date: Monday, December 14, 2009, 2:47 AM> > >  > > > > > > > > > ,>  > Only if your O2 blood level is well above the 90% mark while at rest or engaged in lite activity should you consider not using supplemental O2, and even then discuss that with your pulmonologist. Besides the possible harm to your heart due to an increased load as it tries to pump oxygen throughout your body, you would certainly feel more tired and much sooner in the day, as your recovery time from exertion would be greater. >  > That being said,

almost 4 years ago, I was able to loose 50 pounds through exercise and good eating habits, and the benefit was that I was able to get off O2 for the time being. But I never shyed away from using O2 if I needed it for getting in relly good shape. Using the O2 meter constantly as I exercised, I could work out with confidence. If during exercise you find your O2 level dropping below 90%, adjust the O2 upward and keep going. Our need for oxygen varies with activity, and thus our O2 supplementation needs will vary. The more you can stay active, the better your chances for needing less O2 supplementation. But in the mean time, I strongly suggest staying the course.>  > As for Cellcept, I don't take it, but you may be having some side-effects which may include anxiety, tiredness, upset stomach, or headache. These side effects may increase with dosage, but do consult with your pulmonoligist first before taking the cold turkey route

on meds. Unfortunately treatment for pf is limited, but  hopefully one day soon, we'll have better options So hang in there and do all you can for yourself, if and until that day comes.  > Jerry/Mississippi/ 54/IPF/dx April 05>  >  > > > Who believes that hard times help us appreciate the good times even more.>

[Guest guest]

Please pardon me, I meant MDP or lung Dr. My oxygen stats range from 94 to 97 and lower with exercize.

No one has told me how to control Phlem and I have asked many RNs, MPDs what I might do?

I am beggining to doubt anyone will explain it to me.

An RN at the U of C told me it was OK to use oxygen for sleeping and exercise. All of my recent requests I have submitted to my local MDP were very reasonable in my mind; however,

I made little progress on what I thought I needed. So I hope the U of C has a different opinion. Burns

Subject: Re: question regarding meds and O2To: Breathe-Support Date: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark

while at rest> or engaged in lite activity should you consider not using supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and

keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> >

Who believes that hard times help us appreciate the good times even> more.> >>

[Guest guest]

john

i think the NAC helped clear up the phlegm for me

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: question regarding meds and O2To: Breathe-Support Date: Wednesday, December 16, 2009, 11:24 PM

Please pardon me, I meant MDP or lung Dr. My oxygen stats range from 94 to 97 and lower with exercize.

No one has told me how to control Phlem and I have asked many RNs, MPDs what I might do?

I am beggining to doubt anyone will explain it to me.

An RN at the U of C told me it was OK to use oxygen for sleeping and exercise. All of my recent requests I have submitted to my local MDP were very reasonable in my mind; however,

I made little progress on what I thought I needed. So I hope the U of C has a different opinion. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

I'm glad you asked that. I'm going on NAC this week, I hope it works for me as it has for others in here.

My meds are organized cause I take them all in the morning.......15 of them. I have them all laid out on the kitchen table like breakfast.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, December 17, 2009 6:21:09 PMSubject: Re: Re: question regarding meds and O2

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

: Prior to IPF I needed only 11 (med) pills plus one vitamin pill per day and these I can remember well.

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

consult with your doctor before you take NAC

it works for me

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: question regarding meds and O2To: Breathe-Support Date: Thursday, December 17, 2009, 6:21 PM

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

i can't believe you take all your meds in the am

i take cellcept at 7 am and 7 pm

then i take the fasting meds (3)

then i take some with breakfast (8), lunch (2)

and some before dinner (3)

and bedtime meds (5)

some are taken more than once a day

every two weeks i fill about 6 pill boxes

then on Mondays, i take the once a week med

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: question regarding meds and O2To: Breathe-Support Date: Thursday, December 17, 2009, 6:32 PM

I'm glad you asked that. I'm going on NAC this week, I hope it works for me as it has for others in here.

My meds are organized cause I take them all in the morning..... ..15 of them. I have them all laid out on the kitchen table like breakfast.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 6:21:09 PMSubject: Re: Re: question regarding meds and O2

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

dyanne

i read the brochures that come with the meds

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: question regarding meds and O2To: Breathe-Support Date: Thursday, December 17, 2009, 11:01 PM

Joyce,I really need to ask the pharmacist because I simply divide up the 14 meds/some 2x a day, some 1x a day/ into morning and evening and the same with the 6 vitamins and suppliments. No one, not a doctor or nurse or the guy at Walgreens/I get ALL my meds at one drugstore/has ever said don't take so and so with such and such but like I said Ive never asked either.Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, chocolate in one hand, Margaritas

in the other, loudly proclaiming "Holy **** What a ride!"."

> > >> > >> > > From: Jerry Brown jerryb888@ .> > > Subject: question regarding meds and O2> > > To: Breathe-Support@ yahoogroups. com> > > Date: Monday, December 14, 2009, 2:47 AM> > >> > >> > > Â> > >> > >> > >> > >> > >> > >> > >> > >> > > ,> > >

Â> > > Only if your O2 blood level is well above the 90% mark while at rest> > or engaged in lite activity should you consider not using supplemental> > O2, and even then discuss that with your pulmonologist. Besides the> > possible harm to your heart due to an increased load as it tries to> pump> > oxygen throughout your body, you would certainly feel more tiredÂ> and> > much sooner in the day, as your recovery time from> exertion> > would be greater.> > > Â> > > That being said, almost 4 years ago, I was able to loose 50 pounds> > through exercise and good eating habits, and the benefit was that I> was> > able to get off O2 for the time being. But I never shyed away from> using> > O2 if I needed it for getting in relly good shape. Using

the O2 meter> > constantly as I exercised, I could work out with confidence. If during> > exercise you find your O2 level dropping below 90%, adjust the O2> upward> > and keep going. Our need for oxygen varies with activity, and thus our> > O2 supplementation needs will vary. The more you can stay active, the> > better your chances for needing less O2 supplementation. But in the> mean> > time, I strongly suggest staying the course.> > > Â> > > As for Cellcept, I don't take it, but you may be having some> > side-effects which may include anxiety, tiredness, upset stomach, or> > headache. These side effects may increase with dosage, but doÂ> > consult with your pulmonoligist first before taking the cold turkey> > route on meds. Unfortunately treatment for pf is limited, but Â> >

hopefully one day soon, we'll have better options So hang in> there> > and do all you can for yourself, if and until that day comes. Â> > > Jerry/Mississippi/ 54/IPF/dx April 05> > > Â> > > Â> > >> > >> > > Who believes that hard times help us appreciate the good times even> > more.> > >> >>

[Guest guest]

dyanne

it drives me crazy trying to figure everything out

there is one fasting med that i take with 2 other meds

a friend of mine will only take that med by itself

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: question regarding meds and O2To: Breathe-Support Date: Thursday, December 17, 2009, 11:01 PM

Joyce,I really need to ask the pharmacist because I simply divide up the 14 meds/some 2x a day, some 1x a day/ into morning and evening and the same with the 6 vitamins and suppliments. No one, not a doctor or nurse or the guy at Walgreens/I get ALL my meds at one drugstore/has ever said don't take so and so with such and such but like I said Ive never asked either.Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, chocolate in one hand, Margaritas

in the other, loudly proclaiming "Holy **** What a ride!"."

> > >> > >> > > From: Jerry Brown jerryb888@ .> > > Subject: question regarding meds and O2> > > To: Breathe-Support@ yahoogroups. com> > > Date: Monday, December 14, 2009, 2:47 AM> > >> > >> > > Â> > >> > >> > >> > >> > >> > >> > >> > >> > > ,> > >

Â> > > Only if your O2 blood level is well above the 90% mark while at rest> > or engaged in lite activity should you consider not using supplemental> > O2, and even then discuss that with your pulmonologist. Besides the> > possible harm to your heart due to an increased load as it tries to> pump> > oxygen throughout your body, you would certainly feel more tiredÂ> and> > much sooner in the day, as your recovery time from> exertion> > would be greater.> > > Â> > > That being said, almost 4 years ago, I was able to loose 50 pounds> > through exercise and good eating habits, and the benefit was that I> was> > able to get off O2 for the time being. But I never shyed away from> using> > O2 if I needed it for getting in relly good shape. Using

the O2 meter> > constantly as I exercised, I could work out with confidence. If during> > exercise you find your O2 level dropping below 90%, adjust the O2> upward> > and keep going. Our need for oxygen varies with activity, and thus our> > O2 supplementation needs will vary. The more you can stay active, the> > better your chances for needing less O2 supplementation. But in the> mean> > time, I strongly suggest staying the course.> > > Â> > > As for Cellcept, I don't take it, but you may be having some> > side-effects which may include anxiety, tiredness, upset stomach, or> > headache. These side effects may increase with dosage, but doÂ> > consult with your pulmonoligist first before taking the cold turkey> > route on meds. Unfortunately treatment for pf is limited, but Â> >

hopefully one day soon, we'll have better options So hang in> there> > and do all you can for yourself, if and until that day comes. Â> > > Jerry/Mississippi/ 54/IPF/dx April 05> > > Â> > > Â> > >> > >> > > Who believes that hard times help us appreciate the good times even> > more.> > >> >>

[Guest guest]

Hi ,

I think it takes about 6 weeks to see any benefit of NAC. I don't know that you have to be "a well organized person" but you do need to take it as prescibed.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Thu, December 17, 2009 3:21:09 PMSubject: Re: Re: question regarding meds and O2

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

What does NAC do for everyone that is on it? I was just told to start using it.ThanksTo: Breathe-Support Sent: Fri, December 18, 2009 10:30:24 AMSubject: Re: Re: question regarding meds and

O2

Hi ,

I think it takes about 6 weeks to see any benefit of NAC. I don't know that you have to be "a well organized person" but you do need to take it as prescibed.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 3:21:09 PMSubject: Re: Re: question regarding meds and O2

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

Wow Joyce you got me beat....Most of mine are for high blood pressure.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, December 17, 2009 7:52:56 PMSubject: Re: Re: question regarding meds and O2

i can't believe you take all your meds in the am

i take cellcept at 7 am and 7 pm

then i take the fasting meds (3)

then i take some with breakfast (8), lunch (2)

and some before dinner (3)

and bedtime meds (5)

some are taken more than once a day

every two weeks i fill about 6 pill boxes

then on Mondays, i take the once a week med

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

only one of mine is for high blood pressure

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: question regarding meds and O2To: Breathe-Support Date: Friday, December 18, 2009, 12:54 PM

Wow Joyce you got me beat....Most of mine are for high blood pressure.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 7:52:56 PMSubject: Re: Re: question regarding meds and O2

i can't believe you take all your meds in the am

i take cellcept at 7 am and 7 pm

then i take the fasting meds (3)

then i take some with breakfast (8), lunch (2)

and some before dinner (3)

and bedtime meds (5)

some are taken more than once a day

every two weeks i fill about 6 pill boxes

then on Mondays, i take the once a week med

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

What other suppliments should I take with the NAC I know C but what others?

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, December 17, 2009 6:32:07 PMSubject: Re: Re: question regarding meds and O2

I'm glad you asked that. I'm going on NAC this week, I hope it works for me as it has for others in here.

My meds are organized cause I take them all in the morning..... ..15 of them. I have them all laid out on the kitchen table like breakfast.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 6:21:09 PMSubject: Re: Re: question regarding meds and O2

Joyce, Thank you: I want to try NAC again. I tried NAC before and did not build in the habits necessary to continue using it and to develop any opinion of NAC. I did fortify NAC with vitamin C and other need vitamins. I visited Walgreens and replaced my wife's elaborate pill box from Hospice today. I am taking a battery of pills including vitamins each day and I really need some organization. I have prescription for Ashma meds that I am sure are working. Plain old Sudafed does work me. How long does it take a well organized person to see a difference from NAC?

Are you still using mucous relief?

I still have too much work to keep up with all that was once normal beyond this disease. Normally I succeed in exercising and working on clearing lungs each day. I feel-- perhaps wrongly--that these are my two most important daily goals if I want to survive. I hope I make it better with the new pill box as following up on phone calls and appointments too often takes precedence over taking pills. I do the worst job of managing pills and meds when I am traveling distances. Burns

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

I didn't see anyone answer this one so I'll try. For me it keeps down the mucous and coughing. I like it. I seem to be sensitive to medications and I'm on a lot of them. I don't seem to have a problem with NAC.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental>

O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will

vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.>

>>

[Guest guest]

Sometimes a post does get overlooked...

I was on NAC only one time. Back when I was first dx. It was great for the cough and the mucous but after awhile I noticed really bad stomach pain. I stopped taking it and haven't had problems with stomach or coughing since.

Do be sure and take it with food. I used the caps. Purchased at www.puritansales.com. Best price and lots of us here purchase there.

Sorry Terry, didn't see your post.

From: Beverley Joy

Sent: Saturday, December 19, 2009 9:54 AM

To: Breathe-Support

Subject: Re: Re: question regarding meds and O2

I didn't see anyone answer this one so I'll try. For me it keeps down the mucous and coughing. I like it. I seem to be sensitive to medications and I'm on a lot of them. I don't seem to have a problem with NAC.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.> >>

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.717 / Virus Database: 270.14.113/2573 - Release Date: 12/17/09 23:35:00

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I've been on NAC since about July, and I've been having a lot of stomach pain, maybe that's the reason. Does any one else have this problem?PatTo: Breathe-Support Sent: Sat, December 19, 2009 1:27:21 PMSubject: Re:

Re: question regarding meds and O2

Sometimes a post does get overlooked.. .

I was on NAC only one time. Back when I was first dx. It was great for the cough and the mucous but after awhile I noticed really bad stomach pain. I stopped taking it and haven't had problems with stomach or coughing since.

Do be sure and take it with food. I used the caps. Purchased at www.puritansales. com. Best price and lots of us here purchase there.

Sorry Terry, didn't see your post.

From: Beverley Joy

Sent: Saturday, December 19, 2009 9:54 AM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Re: question regarding meds and O2

I didn't see anyone answer this one so I'll try. For me it keeps down the mucous and coughing. I like it. I seem to be sensitive to medications and I'm on a lot of them. I don't seem to have a problem with NAC.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Bruce <brucemoreland@ gmail.com>Subject: Re: question regarding meds and O2To: Breathe-Support@ yahoogroups. comDate: Wednesday, December 16, 2009, 1:42 PM

My saturations very greatly at different times. But, a typical situationI could sit at 2 lpm and 96%. If I walked around the house slowly at 2lpm I would drop to around 90%. If I tried to do anything like unloadthe dishwasher or put laundry in then they would drop quickly to around85%. So, I'd turn up to 3 lpm for light activity and stay around 90-92%or for heavier activity to 4 lpm.Your saturations will drop when you do activity. How much depends on theperson. But, if I tried to do the activities I mentioned above withoutoxygen, my saturations would quickly drop into the 70's and if Icontinued then lower. Therefore, I don't do it without adequate oxygen.There are some things that I can't get enough oxygen period so justcan't do. If I were to try to lift a very heavy item or push one acrossthe floor, my saturations would drop below 90% even if I was on 6 lpm.> >> >> > From: Jerry Brown jerryb888@ .> > Subject: question regarding meds and O2> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 14, 2009, 2:47 AM> >> >> > Â> >> >> >> >> >> >> >> >> > ,> > Â> > Only if your O2 blood level is well above the 90% mark while at rest> or engaged in lite activity should you consider not using supplemental> O2, and even then discuss that with your pulmonologist. Besides the> possible harm to your heart due to an increased load as it tries topump> oxygen throughout your body, you would certainly feel more tiredÂand> much sooner in the day, as your recovery time fromexertion> would be greater.> > Â> > That being said, almost 4 years ago, I was able to loose 50 pounds> through exercise and good eating habits, and the benefit was that Iwas> able to get off O2 for the time being. But I never shyed away fromusing> O2 if I needed it for getting in relly good shape. Using the O2 meter> constantly as I exercised, I could work out with confidence. If during> exercise you find your O2 level dropping below 90%, adjust the O2upward> and keep going. Our need for oxygen varies with activity, and thus our> O2 supplementation needs will vary. The more you can stay active, the> better your chances for needing less O2 supplementation. But in themean> time, I strongly suggest staying the course.> > Â> > As for Cellcept, I don't take it, but you may be having some> side-effects which may include anxiety, tiredness, upset stomach, or> headache. These side effects may increase with dosage, but doÂ> consult with your pulmonoligist first before taking the cold turkey> route on meds. Unfortunately treatment for pf is limited, but Â> hopefully one day soon, we'll have better options So hang inthere> and do all you can for yourself, if and until that day comes. Â> > Jerry/Mississippi/ 54/IPF/dx April 05> > Â> > Â> >> >> > Who believes that hard times help us appreciate the good times even> more.> >>

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9..0.717 / Virus Database: 270.14.113/2573 - Release Date: 12/17/09 23:35:00