Re: question regarding meds and O2

[Guest guest]

Please talk to your doctor.. Going cold turkey can be dangerous.. Your body will start to substitute O2 and ur gonna feel very tired and SOB. Maybe talking to a psycholigist or something might help. This disease has taken its toll on me mentally too but we have to keep strong. E TejedaILD 11/0936 / SC

So, quick question. If I decide to stop all medication and O2 cold turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I want to try going without, but not sure of the results. Can i be weaned off, go cold turkey or do I have to use until the end of time? Feeling overwhelmed, frustrated and lonely. Please advise. Will stopping all stuff make that much of a difference to the development or progression of IPF? IPF/NSIP 08 NC

[Guest guest]

,

Please, please talk to your doctor before you embark on this plan. The reason you are on oxygen is your lungs don't function well enough to supply your body with enough oxygen to function. I'm assuming you've had 6 minute walks and pft's and the tests that we've all had that caused your doctor to come to the conclusion that you need the oxygen. If you need it and try to live without it, your body will suffer.

During the first few months of 2006 I needed supplemental O2 and didn't know it. No one did the necessary tests until I was hospitalized on Memorial Day. By that time I was in congestive heart failure and very nearly died. I'm fortunate that the damage to my heart was reversable and I've recovered well. I've been using O2 24/7 for 3 and a half years and expect to continue to do so unless or until I decide to have a lung transplant at some point down the road.

As for the Cellcept....it's a powerful immune suppressant. I would not under any circumstances quit it cold turkey unless I was told to by my doctor.

, I think all of us can understand and empathize with your frustration. Do you have someone you can talk to aside from your doctor? A counselor, a clergyperson? Do you take an anti-depressant? I took Zoloft for the first year or so after my diagnosis. I needed it to get through that period. I wouldn't hesitate to take it again if I needed it. Do you sleep well? If not, address that with your doctor too. I guess what I'm trying to say is you need to look after yourself. Be kind and patient with yourself...give your body what it needs to keep going and get the support to live at peace with what we all have to live with.

Lastly, you don't live very far away from me and yet we've never gotten together. There is a meeting of the support group in Cary the third Saturday in January. I will pick you up and bring you if you want. Being in the same room with a bunch of other people going through the same thing helps . You are not alone!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: breathe-support Sent: Mon, December 14, 2009 12:55:17 AMSubject: question regarding meds and O2

So, quick question. If I decide to stop all medication and O2 cold turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I want to try going without, but not sure of the results. Can i be weaned off, go cold turkey or do I have to use until the end of time?

Feeling overwhelmed, frustrated and lonely. Please advise. Will stopping all stuff make that much of a difference to the development or progression of IPF?

IPF/NSIP 08 NC

[Guest guest]

talk to your doctor

if you turn off the oxygen, keep checking your SAT's

that will tell you whether or not you need to use o2

it will also help you determine how many liters you need

i was 24/7 last year

now i use if for exertion and sleep

one of my definitions of exertion includes talking on the phone, because talking makes me cough

sleep because your breathing tends to become more shallow

to summarize -- your body will tell you whether or not you can stop using O2

as for the rest of the meds -- you need medical advise from your doctor

the cellcept is working for me, and has decreased my need for a transplant at this time

i was on 10 mgs of prednisone, pulmonary tried to get me down to 7mgs

when i reached 7 mgs, started having problems, and went back up to 10 mgs after consulting with pulmonary

the air family can not give medical advise, only your doctor can do that,

we can tell you what works for us, but all of us are different

we can give you questions to ask your doctor, but cannot tell you what to do

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: question regarding meds and O2To: breathe-support Date: Monday, December 14, 2009, 12:55 AM

So, quick question. If I decide to stop all medication and O2 cold turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I want to try going without, but not sure of the results. Can i be weaned off, go cold turkey or do I have to use until the end of time?

Feeling overwhelmed, frustrated and lonely. Please advise. Will stopping all stuff make that much of a difference to the development or progression of IPF?

IPF/NSIP 08 NC

[Guest guest]

great answer mary beth PLUS your offer to pick up to take her to the support group is wonderful

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: Monday, December 14, 2009, 8:23 AM

,

Please, please talk to your doctor before you embark on this plan. The reason you are on oxygen is your lungs don't function well enough to supply your body with enough oxygen to function. I'm assuming you've had 6 minute walks and pft's and the tests that we've all had that caused your doctor to come to the conclusion that you need the oxygen. If you need it and try to live without it, your body will suffer.

During the first few months of 2006 I needed supplemental O2 and didn't know it. No one did the necessary tests until I was hospitalized on Memorial Day. By that time I was in congestive heart failure and very nearly died. I'm fortunate that the damage to my heart was reversable and I've recovered well. I've been using O2 24/7 for 3 and a half years and expect to continue to do so unless or until I decide to have a lung transplant at some point down the road.

As for the Cellcept.... it's a powerful immune suppressant. I would not under any circumstances quit it cold turkey unless I was told to by my doctor.

, I think all of us can understand and empathize with your frustration. Do you have someone you can talk to aside from your doctor? A counselor, a clergyperson? Do you take an anti-depressant? I took Zoloft for the first year or so after my diagnosis. I needed it to get through that period. I wouldn't hesitate to take it again if I needed it. Do you sleep well? If not, address that with your doctor too. I guess what I'm trying to say is you need to look after yourself. Be kind and patient with yourself...give your body what it needs to keep going and get the support to live at peace with what we all have to live with.

Lastly, you don't live very far away from me and yet we've never gotten together. There is a meeting of the support group in Cary the third Saturday in January. I will pick you up and bring you if you want. Being in the same room with a bunch of other people going through the same thing helps . You are not alone!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Lainfiesta <froggies3us@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Mon, December 14, 2009 12:55:17 AMSubject: question regarding meds and O2

So, quick question. If I decide to stop all medication and O2 cold turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I want to try going without, but not sure of the results. Can i be weaned off, go cold turkey or do I have to use until the end of time?

Feeling overwhelmed, frustrated and lonely. Please advise. Will stopping all stuff make that much of a difference to the development or progression of IPF?

IPF/NSIP 08 NC

[Guest guest]

3ed Sat in Jan... I'll be ready can you pick me up toooo please please please I wanna GO TO,,

Love & PrayersPeggy, IPF 2004

,

Please, please talk to your doctor before you embark on this plan. The reason you are on oxygen is your lungs don't function well enough to supply your body with enough oxygen to function. I'm assuming you've had 6 minute walks and pft's and the tests that we've all had that caused your doctor to come to the conclusion that you need the oxygen. If you need it and try to live without it, your body will suffer.

During the first few months of 2006 I needed supplemental O2 and didn't know it. No one did the necessary tests until I was hospitalized on Memorial Day. By that time I was in congestive heart failure and very nearly died. I'm fortunate that the damage to my heart was reversable and I've recovered well. I've been using O2 24/7 for 3 and a half years and expect to continue to do so unless or until I decide to have a lung transplant at some point down the road.

As for the Cellcept....it's a powerful immune suppressant. I would not under any circumstances quit it cold turkey unless I was told to by my doctor.

, I think all of us can understand and empathize with your frustration. Do you have someone you can talk to aside from your doctor? A counselor, a clergyperson? Do you take an anti-depressant? I took Zoloft for the first year or so after my diagnosis. I needed it to get through that period. I wouldn't hesitate to take it again if I needed it. Do you sleep well? If not, address that with your doctor too. I guess what I'm trying to say is you need to look after yourself. Be kind and patient with yourself...give your body what it needs to keep going and get the support to live at peace with what we all have to live with.

Lastly, you don't live very far away from me and yet we've never gotten together. There is a meeting of the support group in Cary the third Saturday in January. I will pick you up and bring you if you want. Being in the same room with a bunch of other people going through the same thing helps . You are not alone! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08

From: Lainfiesta <froggies3us (AT) yahoo (DOT) com>To: breathe-support Sent: Mon, December 14, 2009 12:55:17 AMSubject: question regarding meds and O2

So, quick question. If I decide to stop all medication and O2 cold turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I want to try going without, but not sure of the results. Can i be weaned off, go cold turkey or do I have to use until the end of time?

Feeling overwhelmed, frustrated and lonely. Please advise. Will stopping all stuff make that much of a difference to the development or progression of IPF?

IPF/NSIP 08 NC

[Guest guest]

Stopping the oxygen will likely deepen the depression you're already

feeling as the fatigue increases and the ability to do things decreases.

On top of that it will damage your heart, leading to Pulmonary

Hypertension. It may or may not cause other damage. It would be a very

bad decision.

As to stopping the cellcept, I don't know. But doing so without

consulting with your doctor is quite unwise.

It sounds like you may well need an anti-depressant and/or counseling

added. But stopping the oxygen would be a very bad decision and will not

help any of your issues, only worsen them.

>

> So, quick question. If I decide to stop all medication and O2 cold

turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I

want to try going without, but not sure of the results. Can i be weaned

off, go cold turkey or do I have to use until the end of time?

> Feeling overwhelmed, frustrated and lonely. Please advise. Will

stopping all stuff make that much of a difference to the development or

progression of IPF?

> IPF/NSIP 08 NC

>

[Guest guest]

DITTO!!

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: Monday, December 14, 2009, 10:31 AM

3ed Sat in Jan... I'll be ready can you pick me up toooo please please please I wanna GO TO,,

Love & Prayers

Peggy, IPF 2004

,

Please, please talk to your doctor before you embark on this plan. The reason you are on oxygen is your lungs don't function well enough to supply your body with enough oxygen to function. I'm assuming you've had 6 minute walks and pft's and the tests that we've all had that caused your doctor to come to the conclusion that you need the oxygen. If you need it and try to live without it, your body will suffer.

During the first few months of 2006 I needed supplemental O2 and didn't know it. No one did the necessary tests until I was hospitalized on Memorial Day. By that time I was in congestive heart failure and very nearly died. I'm fortunate that the damage to my heart was reversable and I've recovered well. I've been using O2 24/7 for 3 and a half years and expect to continue to do so unless or until I decide to have a lung transplant at some point down the road.

As for the Cellcept.... it's a powerful immune suppressant. I would not under any circumstances quit it cold turkey unless I was told to by my doctor.

, I think all of us can understand and empathize with your frustration. Do you have someone you can talk to aside from your doctor? A counselor, a clergyperson? Do you take an anti-depressant? I took Zoloft for the first year or so after my diagnosis. I needed it to get through that period. I wouldn't hesitate to take it again if I needed it. Do you sleep well? If not, address that with your doctor too. I guess what I'm trying to say is you need to look after yourself. Be kind and patient with yourself...give your body what it needs to keep going and get the support to live at peace with what we all have to live with.

Lastly, you don't live very far away from me and yet we've never gotten together. There is a meeting of the support group in Cary the third Saturday in January. I will pick you up and bring you if you want. Being in the same room with a bunch of other people going through the same thing helps . You are not alone!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Lainfiesta <froggies3us (AT) yahoo (DOT) com>To: breathe-support@ yahoogroups. comSent: Mon, December 14, 2009 12:55:17 AMSubject: question regarding meds and O2

So, quick question. If I decide to stop all medication and O2 cold turkey, what happens? I am currently on 2 liters 24/7 and cellcept. I want to try going without, but not sure of the results. Can i be weaned off, go cold turkey or do I have to use until the end of time?

Feeling overwhelmed, frustrated and lonely. Please advise. Will stopping all stuff make that much of a difference to the development or progression of IPF?

IPF/NSIP 08 NC

[Guest guest]

Why? If you stop your o2 you will be short of breath and if you continue to

drop below 90% saturation your cells will start to die. Believe you me, I'm on

8lpm and if I stop I turn blue in less than five minutes if I'm moving. Again

Why?

Dyane

>

> So, quick question.  If I decide to stop all medication and O2 cold turkey,

what happens?  I am currently on 2 liters 24/7 and cellcept.   I want to try

going without, but not sure of the results.  Can i be weaned off, go cold turkey

or do I have to use until the end of time?  

> Feeling overwhelmed, frustrated and lonely.  Please advise.  Will stopping all

stuff make that much of a difference to the development or progression of IPF?  

> IPF/NSIP 08 NC

>

[Guest guest]

I am getting totally different information on supplemental oxygen. I have been DXs with IPF since 10/08. My MPD experience has led to much different opinions. After these I make up my own mind. IPF is terminal with no good medication that will delay its progresson. So I am probably one that does not always do what my MPDs say. I know there is a risk in being "ones own cook." I have been told to rely on only one MPD and to do everything I am told. My MPD now tells me see you in "six months."

I have lived without needing oxygen support for over a year. I had hopes for another year.

However, the U of Chicago told me oxygen would do no harm and if using it makes one stronger or more comfortable use it. I inherited my late IPF brother's concentrator and I doubt if my MDP would let me rent an oxygen machine at this time. I have a meter for oxygen and I use it often.

I can change my readings to the better by simply drinking fluids in small amounts when I exercise or began my morning work. My MPD tells me not to do this; however, when I wake during the night I drink water. This does not cause acid stomach for me. Burns

Subject: question regarding meds and O2To: Breathe-Support 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 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

> 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]

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]

,

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 Calif

IPF/UIP 10/08

>

>

>

> Subject: question regarding meds and O2

> To: Breathe-Support

> 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]

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,

Lipodermatosclerosis, 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]

,

Thanks for the explanations. They helped a lot. I'm way behind in my board

reading, so others may have already given you good advice, but here's mine

anyway, for what it's worth.

You don't say how low your sats go with exercise, so it's hard to say if you

need oxygen. But levels of 94-97 are really very good & wouldn't justify oxygen

by themselves.

I'm still wondering several other things: has your MDP prescribed any meds for

your GERD? For your IPF? Have you had a CT scan and PFTs for your IPF? I ask

because your extreme level of mucus seems way out of line (to me, a

nonprofessional) with the status of your IPF so far.

I've read about a couple things that might help you clear it, but they are

considered treatment for bronchiectasis, not IPF (another reason I wonder about

your CT scan). Research the treatment for bronchiectasis on both the National

Jewish and Mayo websites. (I can't remember if I found this info on one or both

of them.)

I'm going to try to catch up on the postings before I say any more.

Cees, S Calif

IPF/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

> > >

> > >

> > > 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.

> > >

> >

>