What can affect O2 readings?

N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


As for choosing courses of action based on tests and not how you FEEL... I don't really agree with you there (and honestly, don't subscribe to everything Warwick has to say as law... and never have... even when I lived in that area... that's why I didn't go to him.) I agree docs with a great track record should be given some "air time" and should certainly be followed as to what they are doing that is keeping people alive so long, but I also think one doc's word is not always perfect for every patient. I have been to 3 CF clinics in different parts of the country, all of whom have chosen to go by how patients feel IN ADDTION TO FEV1 when deciding what is going on with someone. For example, I have reflux and allergies which CAN and DO effect my FEV1. If I were admitted every time my FEV1 goes down without thought to what else could be going on, I would be in and out of the hospital every few months and would therefore becoming more and more resistant to more and more meds. </end quote></div>


I never said anything about Warwick. Or U of Mn.

There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.

And not just in the United States either.

Interesting that you wrote a whole post about him though...


<div class="FTQUOTE"><begin quote>
I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.
</end quote></div>


Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?

Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

Help me understand your logic there.


<div class="FTQUOTE"><begin quote>



If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>

If you are desatting, it doesn't matter WHY.

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


As for choosing courses of action based on tests and not how you FEEL... I don't really agree with you there (and honestly, don't subscribe to everything Warwick has to say as law... and never have... even when I lived in that area... that's why I didn't go to him.) I agree docs with a great track record should be given some "air time" and should certainly be followed as to what they are doing that is keeping people alive so long, but I also think one doc's word is not always perfect for every patient. I have been to 3 CF clinics in different parts of the country, all of whom have chosen to go by how patients feel IN ADDTION TO FEV1 when deciding what is going on with someone. For example, I have reflux and allergies which CAN and DO effect my FEV1. If I were admitted every time my FEV1 goes down without thought to what else could be going on, I would be in and out of the hospital every few months and would therefore becoming more and more resistant to more and more meds. </end quote></div>


I never said anything about Warwick. Or U of Mn.

There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.

And not just in the United States either.

Interesting that you wrote a whole post about him though...


<div class="FTQUOTE"><begin quote>
I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.
</end quote></div>


Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?

Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

Help me understand your logic there.


<div class="FTQUOTE"><begin quote>



If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>

If you are desatting, it doesn't matter WHY.

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


As for choosing courses of action based on tests and not how you FEEL... I don't really agree with you there (and honestly, don't subscribe to everything Warwick has to say as law... and never have... even when I lived in that area... that's why I didn't go to him.) I agree docs with a great track record should be given some "air time" and should certainly be followed as to what they are doing that is keeping people alive so long, but I also think one doc's word is not always perfect for every patient. I have been to 3 CF clinics in different parts of the country, all of whom have chosen to go by how patients feel IN ADDTION TO FEV1 when deciding what is going on with someone. For example, I have reflux and allergies which CAN and DO effect my FEV1. If I were admitted every time my FEV1 goes down without thought to what else could be going on, I would be in and out of the hospital every few months and would therefore becoming more and more resistant to more and more meds. </end quote></div>


I never said anything about Warwick. Or U of Mn.

There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.

And not just in the United States either.

Interesting that you wrote a whole post about him though...


<div class="FTQUOTE"><begin quote>
I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.
</end quote></div>


Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?

Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

Help me understand your logic there.


<div class="FTQUOTE"><begin quote>



If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>

If you are desatting, it doesn't matter WHY.

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


As for choosing courses of action based on tests and not how you FEEL... I don't really agree with you there (and honestly, don't subscribe to everything Warwick has to say as law... and never have... even when I lived in that area... that's why I didn't go to him.) I agree docs with a great track record should be given some "air time" and should certainly be followed as to what they are doing that is keeping people alive so long, but I also think one doc's word is not always perfect for every patient. I have been to 3 CF clinics in different parts of the country, all of whom have chosen to go by how patients feel IN ADDTION TO FEV1 when deciding what is going on with someone. For example, I have reflux and allergies which CAN and DO effect my FEV1. If I were admitted every time my FEV1 goes down without thought to what else could be going on, I would be in and out of the hospital every few months and would therefore becoming more and more resistant to more and more meds. </end quote></div>


I never said anything about Warwick. Or U of Mn.

There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.

And not just in the United States either.

Interesting that you wrote a whole post about him though...


<div class="FTQUOTE"><begin quote>
I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.
</end quote></div>


Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?

Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

Help me understand your logic there.


<div class="FTQUOTE"><begin quote>



If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>

If you are desatting, it doesn't matter WHY.

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


As for choosing courses of action based on tests and not how you FEEL... I don't really agree with you there (and honestly, don't subscribe to everything Warwick has to say as law... and never have... even when I lived in that area... that's why I didn't go to him.) I agree docs with a great track record should be given some "air time" and should certainly be followed as to what they are doing that is keeping people alive so long, but I also think one doc's word is not always perfect for every patient. I have been to 3 CF clinics in different parts of the country, all of whom have chosen to go by how patients feel IN ADDTION TO FEV1 when deciding what is going on with someone. For example, I have reflux and allergies which CAN and DO effect my FEV1. If I were admitted every time my FEV1 goes down without thought to what else could be going on, I would be in and out of the hospital every few months and would therefore becoming more and more resistant to more and more meds. </end quote>


I never said anything about Warwick. Or U of Mn.

There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.

And not just in the United States either.

Interesting that you wrote a whole post about him though...


<div class="FTQUOTE"><begin quote>
I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.
</end quote>


Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?

Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

Help me understand your logic there.


<div class="FTQUOTE"><begin quote>



If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote>

If you are desatting, it doesn't matter WHY.

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


As for choosing courses of action based on tests and not how you FEEL... I don't really agree with you there (and honestly, don't subscribe to everything Warwick has to say as law... and never have... even when I lived in that area... that's why I didn't go to him.) I agree docs with a great track record should be given some "air time" and should certainly be followed as to what they are doing that is keeping people alive so long, but I also think one doc's word is not always perfect for every patient. I have been to 3 CF clinics in different parts of the country, all of whom have chosen to go by how patients feel IN ADDTION TO FEV1 when deciding what is going on with someone. For example, I have reflux and allergies which CAN and DO effect my FEV1. If I were admitted every time my FEV1 goes down without thought to what else could be going on, I would be in and out of the hospital every few months and would therefore becoming more and more resistant to more and more meds. </end quote>


I never said anything about Warwick. Or U of Mn.

There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.

And not just in the United States either.

Interesting that you wrote a whole post about him though...


<div class="FTQUOTE"><begin quote>
I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.
</end quote>


Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?

Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

Help me understand your logic there.


<div class="FTQUOTE"><begin quote>



If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote>

If you are desatting, it doesn't matter WHY.

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>







I never said anything about Warwick. Or U of Mn.



There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.



And not just in the United States either.



Interesting that you wrote a whole post about him though...


<b>Sorry, Amy.... My bad. I misunderstood your comment and assumed it was just for Warwick. When I reread I realized you said "many"... However, I find it funny (don't you?) that while you have run into only top centers across the country that give IVs whenever a dip in FEV1 occurs (if that's what you mean by aggressive, since that's what we were talking about), I've now been to 4 centers across the country and none of them hopsitalize or give IVs the instant there is a drop in FEV1 (one is a research center). Things like allergies, reflux, and getting over a cold, etc. are all taken into account and other "remedies"... i.e. reflux or allergy meds, etc.... are tried first and a re-take of PFTs are done in a month or two. I'm not saying either way is better, I'm just saying its funny that the places you've been and the places I've been are so different. <img src="i/expressions/face-icon-small-smile.gif" border="0"> </b>



<div class="FTQUOTE"><begin quote>

I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.

</end quote></div>





Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?



Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

<b>I've many times dropped in FEV1 when getting over a cold (having not exercised much) and have NOT gone of IV meds to help bring it up and have done so on my own with exercise. Many on this site sing the praises of exercise, and I am one of them. Instead of IV meds when I've had drops in the past, docs almost always first suggest upping my exercise and/or treatments and seeing if that will help first. Usually, it has... knock on wood! LOL. </b>

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

<b>Everyone will slip in FEV1. That is the nature of CF. However, if I have increased my FEV1 over the past year with nothing but exercise and then drop when I stop exercising, it is probably not because I need IV's and rather because I need to exercise more, etc.... I have done this and it works. It may not work for everyone and I'm sure others on this site find no other route but to go on IVs when their FEV1 drops, but it does not always mean without IVs you will continue to slip. I think we've all had good and bad days with FEV1 and also probably all have ways we know/think to try before the dreaded IVs. The docs that I've had all agree that we should try other means for a month or two before rushing to use meds (usually it is because they DON'T want patients to become resistant to meds and want instead to try one or two other things... at least this is what MY docs have said....)</b>


Help me understand your logic there.


<b>I think you and I just disagree on what necessitates an IV cleanout. No worries though. I appreciate your opinion. I'm sure many on this site (as well as their docs) have reasons and rationales as to how to increase FEV1, keep it from slipping, keep sensitive to meds (and reasons you should be sensitive to them or reasons to not worry about that), etc. I personally would like to try to do whatever I can to gain lung function that does NOT include IVs until my other means no longer work at bringing up my FEV1. When that happens, I agree with you that it would be silly to continue loosing FEV1. But, if other things work to bring FEV1 up (i.e. acid reflux meds, allergy meds, exercise, etc.) why would you choose to do IV meds instantly instead of trying other things??? This logic makes no sense to me. </b>


<div class="FTQUOTE"><begin quote>







If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>



If you are desatting, it doesn't matter WHY.

<b>This is true to an extent except for my logic as mentioned above... IF its because of allergies, I could try allergy meds, if its because of pollution, I could ask for a change in station, if its because of climate, I could get a treatmill at home so I'm not working out in an 85 degree gym! These are things that, if I knew they could affect my O2, I could DO SOMETHING ABOUT first and see if that worked. If none of these have any affect at all on O2 and the absolute ONLY thing that is making me desat is CF, then so be it... bring on the oxygen!</b>

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

<b>No, it would still cause me damage, but perhaps allergy meds would be more reasonable as a first step, no?</b>

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

<b>No, its still hard on my body. Got it. But, if its THAT polluted here that I can't workout without O2, but can do everything else without it, I'd like to ask for a change of station so I can workout without it. Again, this is something I can control.</b>

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

<b>I actually did some research on my O2 machine tonight and its accurate within a + or - 2%. So, pretty accurate, but it did say your finger must be dry (I'm sweating when I run) and that ambient light can effect a reading and render it completely inaccurate. So, though I do think my meter is pretty darn accurate, even its own website says there are margins of error and reasons for poor readings.</b>

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....</end quote></div>

<b>I agree entirely. This is why I orginally started posted on this topic. I come here to get other peoples' take on the situation and have gotten some amazing (and often complex) insights that I will certainly bring up to my doctors. I would like a formal study done and everything to be analyzed regarding my O2, HR, etc. and have it analyzed by my CF doc, cardiologist AND exercise physiologist (I know this is asking a lot, but I owe that to myself) to see what an appropriate level of physical fitness is for me (with or without oxygen). I wish they'd do this for all CF patients. They do workups for athletes prior to bodybuilding, running marathons, etc. so why not do them on people like us who are prescribed exercising as a treatment? They tell us "exercise is great and you must workout", but the docs I've contacted leave it at that and don't go into how hard, how much, what to do, etc. That would be very helpful, I think. </b>

<b>Anyway, I do appreciate your thoughts on this, Amy. I also appreciate what others have had to say via the posts AND PMs. I will take all this info. and apply it when I go to clinic and talk to them about O2.

In the meantime, if anyone has anything else to add as to what can affect O2 levels (the original question), that would be great. Maybe others have asked their docs or know of studies or anything you wish to add. I'm just curious.

I will keep ya'll posted on my doc's opinion of things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wow, sorry this got so long!!!!</b>
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>







I never said anything about Warwick. Or U of Mn.



There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.



And not just in the United States either.



Interesting that you wrote a whole post about him though...


<b>Sorry, Amy.... My bad. I misunderstood your comment and assumed it was just for Warwick. When I reread I realized you said "many"... However, I find it funny (don't you?) that while you have run into only top centers across the country that give IVs whenever a dip in FEV1 occurs (if that's what you mean by aggressive, since that's what we were talking about), I've now been to 4 centers across the country and none of them hopsitalize or give IVs the instant there is a drop in FEV1 (one is a research center). Things like allergies, reflux, and getting over a cold, etc. are all taken into account and other "remedies"... i.e. reflux or allergy meds, etc.... are tried first and a re-take of PFTs are done in a month or two. I'm not saying either way is better, I'm just saying its funny that the places you've been and the places I've been are so different. <img src="i/expressions/face-icon-small-smile.gif" border="0"> </b>



<div class="FTQUOTE"><begin quote>

I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.

</end quote></div>





Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?



Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

<b>I've many times dropped in FEV1 when getting over a cold (having not exercised much) and have NOT gone of IV meds to help bring it up and have done so on my own with exercise. Many on this site sing the praises of exercise, and I am one of them. Instead of IV meds when I've had drops in the past, docs almost always first suggest upping my exercise and/or treatments and seeing if that will help first. Usually, it has... knock on wood! LOL. </b>

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

<b>Everyone will slip in FEV1. That is the nature of CF. However, if I have increased my FEV1 over the past year with nothing but exercise and then drop when I stop exercising, it is probably not because I need IV's and rather because I need to exercise more, etc.... I have done this and it works. It may not work for everyone and I'm sure others on this site find no other route but to go on IVs when their FEV1 drops, but it does not always mean without IVs you will continue to slip. I think we've all had good and bad days with FEV1 and also probably all have ways we know/think to try before the dreaded IVs. The docs that I've had all agree that we should try other means for a month or two before rushing to use meds (usually it is because they DON'T want patients to become resistant to meds and want instead to try one or two other things... at least this is what MY docs have said....)</b>


Help me understand your logic there.


<b>I think you and I just disagree on what necessitates an IV cleanout. No worries though. I appreciate your opinion. I'm sure many on this site (as well as their docs) have reasons and rationales as to how to increase FEV1, keep it from slipping, keep sensitive to meds (and reasons you should be sensitive to them or reasons to not worry about that), etc. I personally would like to try to do whatever I can to gain lung function that does NOT include IVs until my other means no longer work at bringing up my FEV1. When that happens, I agree with you that it would be silly to continue loosing FEV1. But, if other things work to bring FEV1 up (i.e. acid reflux meds, allergy meds, exercise, etc.) why would you choose to do IV meds instantly instead of trying other things??? This logic makes no sense to me. </b>


<div class="FTQUOTE"><begin quote>







If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>



If you are desatting, it doesn't matter WHY.

<b>This is true to an extent except for my logic as mentioned above... IF its because of allergies, I could try allergy meds, if its because of pollution, I could ask for a change in station, if its because of climate, I could get a treatmill at home so I'm not working out in an 85 degree gym! These are things that, if I knew they could affect my O2, I could DO SOMETHING ABOUT first and see if that worked. If none of these have any affect at all on O2 and the absolute ONLY thing that is making me desat is CF, then so be it... bring on the oxygen!</b>

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

<b>No, it would still cause me damage, but perhaps allergy meds would be more reasonable as a first step, no?</b>

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

<b>No, its still hard on my body. Got it. But, if its THAT polluted here that I can't workout without O2, but can do everything else without it, I'd like to ask for a change of station so I can workout without it. Again, this is something I can control.</b>

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

<b>I actually did some research on my O2 machine tonight and its accurate within a + or - 2%. So, pretty accurate, but it did say your finger must be dry (I'm sweating when I run) and that ambient light can effect a reading and render it completely inaccurate. So, though I do think my meter is pretty darn accurate, even its own website says there are margins of error and reasons for poor readings.</b>

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....</end quote></div>

<b>I agree entirely. This is why I orginally started posted on this topic. I come here to get other peoples' take on the situation and have gotten some amazing (and often complex) insights that I will certainly bring up to my doctors. I would like a formal study done and everything to be analyzed regarding my O2, HR, etc. and have it analyzed by my CF doc, cardiologist AND exercise physiologist (I know this is asking a lot, but I owe that to myself) to see what an appropriate level of physical fitness is for me (with or without oxygen). I wish they'd do this for all CF patients. They do workups for athletes prior to bodybuilding, running marathons, etc. so why not do them on people like us who are prescribed exercising as a treatment? They tell us "exercise is great and you must workout", but the docs I've contacted leave it at that and don't go into how hard, how much, what to do, etc. That would be very helpful, I think. </b>

<b>Anyway, I do appreciate your thoughts on this, Amy. I also appreciate what others have had to say via the posts AND PMs. I will take all this info. and apply it when I go to clinic and talk to them about O2.

In the meantime, if anyone has anything else to add as to what can affect O2 levels (the original question), that would be great. Maybe others have asked their docs or know of studies or anything you wish to add. I'm just curious.

I will keep ya'll posted on my doc's opinion of things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wow, sorry this got so long!!!!</b>
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>







I never said anything about Warwick. Or U of Mn.



There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.



And not just in the United States either.



Interesting that you wrote a whole post about him though...


<b>Sorry, Amy.... My bad. I misunderstood your comment and assumed it was just for Warwick. When I reread I realized you said "many"... However, I find it funny (don't you?) that while you have run into only top centers across the country that give IVs whenever a dip in FEV1 occurs (if that's what you mean by aggressive, since that's what we were talking about), I've now been to 4 centers across the country and none of them hopsitalize or give IVs the instant there is a drop in FEV1 (one is a research center). Things like allergies, reflux, and getting over a cold, etc. are all taken into account and other "remedies"... i.e. reflux or allergy meds, etc.... are tried first and a re-take of PFTs are done in a month or two. I'm not saying either way is better, I'm just saying its funny that the places you've been and the places I've been are so different. <img src="i/expressions/face-icon-small-smile.gif" border="0"> </b>



<div class="FTQUOTE"><begin quote>

I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.

</end quote></div>





Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?



Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

<b>I've many times dropped in FEV1 when getting over a cold (having not exercised much) and have NOT gone of IV meds to help bring it up and have done so on my own with exercise. Many on this site sing the praises of exercise, and I am one of them. Instead of IV meds when I've had drops in the past, docs almost always first suggest upping my exercise and/or treatments and seeing if that will help first. Usually, it has... knock on wood! LOL. </b>

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

<b>Everyone will slip in FEV1. That is the nature of CF. However, if I have increased my FEV1 over the past year with nothing but exercise and then drop when I stop exercising, it is probably not because I need IV's and rather because I need to exercise more, etc.... I have done this and it works. It may not work for everyone and I'm sure others on this site find no other route but to go on IVs when their FEV1 drops, but it does not always mean without IVs you will continue to slip. I think we've all had good and bad days with FEV1 and also probably all have ways we know/think to try before the dreaded IVs. The docs that I've had all agree that we should try other means for a month or two before rushing to use meds (usually it is because they DON'T want patients to become resistant to meds and want instead to try one or two other things... at least this is what MY docs have said....)</b>


Help me understand your logic there.


<b>I think you and I just disagree on what necessitates an IV cleanout. No worries though. I appreciate your opinion. I'm sure many on this site (as well as their docs) have reasons and rationales as to how to increase FEV1, keep it from slipping, keep sensitive to meds (and reasons you should be sensitive to them or reasons to not worry about that), etc. I personally would like to try to do whatever I can to gain lung function that does NOT include IVs until my other means no longer work at bringing up my FEV1. When that happens, I agree with you that it would be silly to continue loosing FEV1. But, if other things work to bring FEV1 up (i.e. acid reflux meds, allergy meds, exercise, etc.) why would you choose to do IV meds instantly instead of trying other things??? This logic makes no sense to me. </b>


<div class="FTQUOTE"><begin quote>







If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>



If you are desatting, it doesn't matter WHY.

<b>This is true to an extent except for my logic as mentioned above... IF its because of allergies, I could try allergy meds, if its because of pollution, I could ask for a change in station, if its because of climate, I could get a treatmill at home so I'm not working out in an 85 degree gym! These are things that, if I knew they could affect my O2, I could DO SOMETHING ABOUT first and see if that worked. If none of these have any affect at all on O2 and the absolute ONLY thing that is making me desat is CF, then so be it... bring on the oxygen!</b>

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

<b>No, it would still cause me damage, but perhaps allergy meds would be more reasonable as a first step, no?</b>

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

<b>No, its still hard on my body. Got it. But, if its THAT polluted here that I can't workout without O2, but can do everything else without it, I'd like to ask for a change of station so I can workout without it. Again, this is something I can control.</b>

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

<b>I actually did some research on my O2 machine tonight and its accurate within a + or - 2%. So, pretty accurate, but it did say your finger must be dry (I'm sweating when I run) and that ambient light can effect a reading and render it completely inaccurate. So, though I do think my meter is pretty darn accurate, even its own website says there are margins of error and reasons for poor readings.</b>

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....</end quote></div>

<b>I agree entirely. This is why I orginally started posted on this topic. I come here to get other peoples' take on the situation and have gotten some amazing (and often complex) insights that I will certainly bring up to my doctors. I would like a formal study done and everything to be analyzed regarding my O2, HR, etc. and have it analyzed by my CF doc, cardiologist AND exercise physiologist (I know this is asking a lot, but I owe that to myself) to see what an appropriate level of physical fitness is for me (with or without oxygen). I wish they'd do this for all CF patients. They do workups for athletes prior to bodybuilding, running marathons, etc. so why not do them on people like us who are prescribed exercising as a treatment? They tell us "exercise is great and you must workout", but the docs I've contacted leave it at that and don't go into how hard, how much, what to do, etc. That would be very helpful, I think. </b>

<b>Anyway, I do appreciate your thoughts on this, Amy. I also appreciate what others have had to say via the posts AND PMs. I will take all this info. and apply it when I go to clinic and talk to them about O2.

In the meantime, if anyone has anything else to add as to what can affect O2 levels (the original question), that would be great. Maybe others have asked their docs or know of studies or anything you wish to add. I'm just curious.

I will keep ya'll posted on my doc's opinion of things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wow, sorry this got so long!!!!</b>
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>







I never said anything about Warwick. Or U of Mn.



There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.



And not just in the United States either.



Interesting that you wrote a whole post about him though...


<b>Sorry, Amy.... My bad. I misunderstood your comment and assumed it was just for Warwick. When I reread I realized you said "many"... However, I find it funny (don't you?) that while you have run into only top centers across the country that give IVs whenever a dip in FEV1 occurs (if that's what you mean by aggressive, since that's what we were talking about), I've now been to 4 centers across the country and none of them hopsitalize or give IVs the instant there is a drop in FEV1 (one is a research center). Things like allergies, reflux, and getting over a cold, etc. are all taken into account and other "remedies"... i.e. reflux or allergy meds, etc.... are tried first and a re-take of PFTs are done in a month or two. I'm not saying either way is better, I'm just saying its funny that the places you've been and the places I've been are so different. <img src="i/expressions/face-icon-small-smile.gif" border="0"> </b>



<div class="FTQUOTE"><begin quote>

I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.

</end quote></div>





Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?



Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

<b>I've many times dropped in FEV1 when getting over a cold (having not exercised much) and have NOT gone of IV meds to help bring it up and have done so on my own with exercise. Many on this site sing the praises of exercise, and I am one of them. Instead of IV meds when I've had drops in the past, docs almost always first suggest upping my exercise and/or treatments and seeing if that will help first. Usually, it has... knock on wood! LOL. </b>

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

<b>Everyone will slip in FEV1. That is the nature of CF. However, if I have increased my FEV1 over the past year with nothing but exercise and then drop when I stop exercising, it is probably not because I need IV's and rather because I need to exercise more, etc.... I have done this and it works. It may not work for everyone and I'm sure others on this site find no other route but to go on IVs when their FEV1 drops, but it does not always mean without IVs you will continue to slip. I think we've all had good and bad days with FEV1 and also probably all have ways we know/think to try before the dreaded IVs. The docs that I've had all agree that we should try other means for a month or two before rushing to use meds (usually it is because they DON'T want patients to become resistant to meds and want instead to try one or two other things... at least this is what MY docs have said....)</b>


Help me understand your logic there.


<b>I think you and I just disagree on what necessitates an IV cleanout. No worries though. I appreciate your opinion. I'm sure many on this site (as well as their docs) have reasons and rationales as to how to increase FEV1, keep it from slipping, keep sensitive to meds (and reasons you should be sensitive to them or reasons to not worry about that), etc. I personally would like to try to do whatever I can to gain lung function that does NOT include IVs until my other means no longer work at bringing up my FEV1. When that happens, I agree with you that it would be silly to continue loosing FEV1. But, if other things work to bring FEV1 up (i.e. acid reflux meds, allergy meds, exercise, etc.) why would you choose to do IV meds instantly instead of trying other things??? This logic makes no sense to me. </b>


<div class="FTQUOTE"><begin quote>







If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote></div>



If you are desatting, it doesn't matter WHY.

<b>This is true to an extent except for my logic as mentioned above... IF its because of allergies, I could try allergy meds, if its because of pollution, I could ask for a change in station, if its because of climate, I could get a treatmill at home so I'm not working out in an 85 degree gym! These are things that, if I knew they could affect my O2, I could DO SOMETHING ABOUT first and see if that worked. If none of these have any affect at all on O2 and the absolute ONLY thing that is making me desat is CF, then so be it... bring on the oxygen!</b>

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

<b>No, it would still cause me damage, but perhaps allergy meds would be more reasonable as a first step, no?</b>

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

<b>No, its still hard on my body. Got it. But, if its THAT polluted here that I can't workout without O2, but can do everything else without it, I'd like to ask for a change of station so I can workout without it. Again, this is something I can control.</b>

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

<b>I actually did some research on my O2 machine tonight and its accurate within a + or - 2%. So, pretty accurate, but it did say your finger must be dry (I'm sweating when I run) and that ambient light can effect a reading and render it completely inaccurate. So, though I do think my meter is pretty darn accurate, even its own website says there are margins of error and reasons for poor readings.</b>

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....</end quote></div>

<b>I agree entirely. This is why I orginally started posted on this topic. I come here to get other peoples' take on the situation and have gotten some amazing (and often complex) insights that I will certainly bring up to my doctors. I would like a formal study done and everything to be analyzed regarding my O2, HR, etc. and have it analyzed by my CF doc, cardiologist AND exercise physiologist (I know this is asking a lot, but I owe that to myself) to see what an appropriate level of physical fitness is for me (with or without oxygen). I wish they'd do this for all CF patients. They do workups for athletes prior to bodybuilding, running marathons, etc. so why not do them on people like us who are prescribed exercising as a treatment? They tell us "exercise is great and you must workout", but the docs I've contacted leave it at that and don't go into how hard, how much, what to do, etc. That would be very helpful, I think. </b>

<b>Anyway, I do appreciate your thoughts on this, Amy. I also appreciate what others have had to say via the posts AND PMs. I will take all this info. and apply it when I go to clinic and talk to them about O2.

In the meantime, if anyone has anything else to add as to what can affect O2 levels (the original question), that would be great. Maybe others have asked their docs or know of studies or anything you wish to add. I'm just curious.

I will keep ya'll posted on my doc's opinion of things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wow, sorry this got so long!!!!</b>
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>







I never said anything about Warwick. Or U of Mn.



There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.



And not just in the United States either.



Interesting that you wrote a whole post about him though...


<b>Sorry, Amy.... My bad. I misunderstood your comment and assumed it was just for Warwick. When I reread I realized you said "many"... However, I find it funny (don't you?) that while you have run into only top centers across the country that give IVs whenever a dip in FEV1 occurs (if that's what you mean by aggressive, since that's what we were talking about), I've now been to 4 centers across the country and none of them hopsitalize or give IVs the instant there is a drop in FEV1 (one is a research center). Things like allergies, reflux, and getting over a cold, etc. are all taken into account and other "remedies"... i.e. reflux or allergy meds, etc.... are tried first and a re-take of PFTs are done in a month or two. I'm not saying either way is better, I'm just saying its funny that the places you've been and the places I've been are so different. <img src="i/expressions/face-icon-small-smile.gif" border="0"> </b>



<div class="FTQUOTE"><begin quote>

I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.

</end quote>





Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?



Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

<b>I've many times dropped in FEV1 when getting over a cold (having not exercised much) and have NOT gone of IV meds to help bring it up and have done so on my own with exercise. Many on this site sing the praises of exercise, and I am one of them. Instead of IV meds when I've had drops in the past, docs almost always first suggest upping my exercise and/or treatments and seeing if that will help first. Usually, it has... knock on wood! LOL. </b>

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

<b>Everyone will slip in FEV1. That is the nature of CF. However, if I have increased my FEV1 over the past year with nothing but exercise and then drop when I stop exercising, it is probably not because I need IV's and rather because I need to exercise more, etc.... I have done this and it works. It may not work for everyone and I'm sure others on this site find no other route but to go on IVs when their FEV1 drops, but it does not always mean without IVs you will continue to slip. I think we've all had good and bad days with FEV1 and also probably all have ways we know/think to try before the dreaded IVs. The docs that I've had all agree that we should try other means for a month or two before rushing to use meds (usually it is because they DON'T want patients to become resistant to meds and want instead to try one or two other things... at least this is what MY docs have said....)</b>


Help me understand your logic there.


<b>I think you and I just disagree on what necessitates an IV cleanout. No worries though. I appreciate your opinion. I'm sure many on this site (as well as their docs) have reasons and rationales as to how to increase FEV1, keep it from slipping, keep sensitive to meds (and reasons you should be sensitive to them or reasons to not worry about that), etc. I personally would like to try to do whatever I can to gain lung function that does NOT include IVs until my other means no longer work at bringing up my FEV1. When that happens, I agree with you that it would be silly to continue loosing FEV1. But, if other things work to bring FEV1 up (i.e. acid reflux meds, allergy meds, exercise, etc.) why would you choose to do IV meds instantly instead of trying other things??? This logic makes no sense to me. </b>


<div class="FTQUOTE"><begin quote>







If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote>



If you are desatting, it doesn't matter WHY.

<b>This is true to an extent except for my logic as mentioned above... IF its because of allergies, I could try allergy meds, if its because of pollution, I could ask for a change in station, if its because of climate, I could get a treatmill at home so I'm not working out in an 85 degree gym! These are things that, if I knew they could affect my O2, I could DO SOMETHING ABOUT first and see if that worked. If none of these have any affect at all on O2 and the absolute ONLY thing that is making me desat is CF, then so be it... bring on the oxygen!</b>

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

<b>No, it would still cause me damage, but perhaps allergy meds would be more reasonable as a first step, no?</b>

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

<b>No, its still hard on my body. Got it. But, if its THAT polluted here that I can't workout without O2, but can do everything else without it, I'd like to ask for a change of station so I can workout without it. Again, this is something I can control.</b>

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

<b>I actually did some research on my O2 machine tonight and its accurate within a + or - 2%. So, pretty accurate, but it did say your finger must be dry (I'm sweating when I run) and that ambient light can effect a reading and render it completely inaccurate. So, though I do think my meter is pretty darn accurate, even its own website says there are margins of error and reasons for poor readings.</b>

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....</end quote>

<b>I agree entirely. This is why I orginally started posted on this topic. I come here to get other peoples' take on the situation and have gotten some amazing (and often complex) insights that I will certainly bring up to my doctors. I would like a formal study done and everything to be analyzed regarding my O2, HR, etc. and have it analyzed by my CF doc, cardiologist AND exercise physiologist (I know this is asking a lot, but I owe that to myself) to see what an appropriate level of physical fitness is for me (with or without oxygen). I wish they'd do this for all CF patients. They do workups for athletes prior to bodybuilding, running marathons, etc. so why not do them on people like us who are prescribed exercising as a treatment? They tell us "exercise is great and you must workout", but the docs I've contacted leave it at that and don't go into how hard, how much, what to do, etc. That would be very helpful, I think. </b>

<b>Anyway, I do appreciate your thoughts on this, Amy. I also appreciate what others have had to say via the posts AND PMs. I will take all this info. and apply it when I go to clinic and talk to them about O2.

In the meantime, if anyone has anything else to add as to what can affect O2 levels (the original question), that would be great. Maybe others have asked their docs or know of studies or anything you wish to add. I'm just curious.

I will keep ya'll posted on my doc's opinion of things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wow, sorry this got so long!!!!</b>
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>







I never said anything about Warwick. Or U of Mn.



There are several clinics throughout the country with higher than average life expectancies and I was referring to all of them. And the top clinics treat patients agressively.



And not just in the United States either.



Interesting that you wrote a whole post about him though...


<b>Sorry, Amy.... My bad. I misunderstood your comment and assumed it was just for Warwick. When I reread I realized you said "many"... However, I find it funny (don't you?) that while you have run into only top centers across the country that give IVs whenever a dip in FEV1 occurs (if that's what you mean by aggressive, since that's what we were talking about), I've now been to 4 centers across the country and none of them hopsitalize or give IVs the instant there is a drop in FEV1 (one is a research center). Things like allergies, reflux, and getting over a cold, etc. are all taken into account and other "remedies"... i.e. reflux or allergy meds, etc.... are tried first and a re-take of PFTs are done in a month or two. I'm not saying either way is better, I'm just saying its funny that the places you've been and the places I've been are so different. <img src="i/expressions/face-icon-small-smile.gif" border="0"> </b>



<div class="FTQUOTE"><begin quote>

I am currently VERY sensitive to many meds because I go in when I'm actually having an exacerbation and not just cause such and such day my numbers were down.

</end quote>





Here's my question. Who care about being sensitive to antibiotics when you have a low FEV1? What's the point?



Great, so you're sensitive to antibiotics. What good does that do you when you're FEV1 isn't so great? Does that bring your FEV1 back up? Nope.

<b>I've many times dropped in FEV1 when getting over a cold (having not exercised much) and have NOT gone of IV meds to help bring it up and have done so on my own with exercise. Many on this site sing the praises of exercise, and I am one of them. Instead of IV meds when I've had drops in the past, docs almost always first suggest upping my exercise and/or treatments and seeing if that will help first. Usually, it has... knock on wood! LOL. </b>

Being sensitive to antiobiotics doesn't prolong life. Avoiding a slip in FEV1 does.

<b>Everyone will slip in FEV1. That is the nature of CF. However, if I have increased my FEV1 over the past year with nothing but exercise and then drop when I stop exercising, it is probably not because I need IV's and rather because I need to exercise more, etc.... I have done this and it works. It may not work for everyone and I'm sure others on this site find no other route but to go on IVs when their FEV1 drops, but it does not always mean without IVs you will continue to slip. I think we've all had good and bad days with FEV1 and also probably all have ways we know/think to try before the dreaded IVs. The docs that I've had all agree that we should try other means for a month or two before rushing to use meds (usually it is because they DON'T want patients to become resistant to meds and want instead to try one or two other things... at least this is what MY docs have said....)</b>


Help me understand your logic there.


<b>I think you and I just disagree on what necessitates an IV cleanout. No worries though. I appreciate your opinion. I'm sure many on this site (as well as their docs) have reasons and rationales as to how to increase FEV1, keep it from slipping, keep sensitive to meds (and reasons you should be sensitive to them or reasons to not worry about that), etc. I personally would like to try to do whatever I can to gain lung function that does NOT include IVs until my other means no longer work at bringing up my FEV1. When that happens, I agree with you that it would be silly to continue loosing FEV1. But, if other things work to bring FEV1 up (i.e. acid reflux meds, allergy meds, exercise, etc.) why would you choose to do IV meds instantly instead of trying other things??? This logic makes no sense to me. </b>


<div class="FTQUOTE"><begin quote>







If everyone were to tell me the O2 test is the most accurate test and is rarely effected by things like pollution, allergies, reflux, etc.</end quote>



If you are desatting, it doesn't matter WHY.

<b>This is true to an extent except for my logic as mentioned above... IF its because of allergies, I could try allergy meds, if its because of pollution, I could ask for a change in station, if its because of climate, I could get a treatmill at home so I'm not working out in an 85 degree gym! These are things that, if I knew they could affect my O2, I could DO SOMETHING ABOUT first and see if that worked. If none of these have any affect at all on O2 and the absolute ONLY thing that is making me desat is CF, then so be it... bring on the oxygen!</b>

What if you were desatting because of allergies? Does that mean you don't still need O2? <b> NO </b> You are still desatting and damaging your body. Does your body go "oh I'm desatting due to Allergies so it wont' cause me damage?" ??????

<b>No, it would still cause me damage, but perhaps allergy meds would be more reasonable as a first step, no?</b>

What about pollution. Does your body say that your heart isn't damaged by desatting because it's due to pollution? It doesn't change that you're desatting.

<b>No, its still hard on my body. Got it. But, if its THAT polluted here that I can't workout without O2, but can do everything else without it, I'd like to ask for a change of station so I can workout without it. Again, this is something I can control.</b>

So the machine is accurate in measuring your oxygen saturation. You have CF and there may or may not be other htings that are making your lungs worse. So the machine is accurate - it knows your oxygen saturation at that moment and does take into account everything that affects O2.

<b>I actually did some research on my O2 machine tonight and its accurate within a + or - 2%. So, pretty accurate, but it did say your finger must be dry (I'm sweating when I run) and that ambient light can effect a reading and render it completely inaccurate. So, though I do think my meter is pretty darn accurate, even its own website says there are margins of error and reasons for poor readings.</b>

I'll conclude with the expression "Don't shoot the messanger." You may not like what the pulse ox monitor is telling you, but de-crediting what the machine does won't get you anywhere and will not change the truth....</end quote>

<b>I agree entirely. This is why I orginally started posted on this topic. I come here to get other peoples' take on the situation and have gotten some amazing (and often complex) insights that I will certainly bring up to my doctors. I would like a formal study done and everything to be analyzed regarding my O2, HR, etc. and have it analyzed by my CF doc, cardiologist AND exercise physiologist (I know this is asking a lot, but I owe that to myself) to see what an appropriate level of physical fitness is for me (with or without oxygen). I wish they'd do this for all CF patients. They do workups for athletes prior to bodybuilding, running marathons, etc. so why not do them on people like us who are prescribed exercising as a treatment? They tell us "exercise is great and you must workout", but the docs I've contacted leave it at that and don't go into how hard, how much, what to do, etc. That would be very helpful, I think. </b>

<b>Anyway, I do appreciate your thoughts on this, Amy. I also appreciate what others have had to say via the posts AND PMs. I will take all this info. and apply it when I go to clinic and talk to them about O2.

In the meantime, if anyone has anything else to add as to what can affect O2 levels (the original question), that would be great. Maybe others have asked their docs or know of studies or anything you wish to add. I'm just curious.

I will keep ya'll posted on my doc's opinion of things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wow, sorry this got so long!!!!</b>
 
L

LisaV

New member
Anything that effects how much oxygen you can get into your lungs will effect the readings (that includes the small things you noted). The real concern is that other than bad lung function per se, the thing that is most likely to effect the reading is heart damage.

See

Causes for Low Oxygen When Heart Rate Increases <a target=_blank class=ftalternatingbarlinklarge href="http://www.medhelp.org/forums/cardio/archive/10845.html">http://www.medhelp.org/forums/cardio/archive/10845.html</a>

How Oximeters Work and What Effects Their Readings <a target=_blank class=ftalternatingbarlinklarge href="http://reviews.ebay.com/Pulse-Oximeters-FACTS-Guide_W0QQugidZ10000000001217352">http://reviews.ebay.com/Pulse-...ugidZ10000000001217352</a>

Reprinted from Respiratory Care " AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation" including "LIMITATIONS OF PROCEDURE/VALIDATION OF RESULTS" <a target=_blank class=ftalternatingbarlinklarge href="http://www.rcjournal.com/cpgs/etehdcpg-update.html">http://www.rcjournal.com/cpgs/etehdcpg-update.html</a>

You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.
 
L

LisaV

New member
Anything that effects how much oxygen you can get into your lungs will effect the readings (that includes the small things you noted). The real concern is that other than bad lung function per se, the thing that is most likely to effect the reading is heart damage.

See

Causes for Low Oxygen When Heart Rate Increases <a target=_blank class=ftalternatingbarlinklarge href="http://www.medhelp.org/forums/cardio/archive/10845.html">http://www.medhelp.org/forums/cardio/archive/10845.html</a>

How Oximeters Work and What Effects Their Readings <a target=_blank class=ftalternatingbarlinklarge href="http://reviews.ebay.com/Pulse-Oximeters-FACTS-Guide_W0QQugidZ10000000001217352">http://reviews.ebay.com/Pulse-...ugidZ10000000001217352</a>

Reprinted from Respiratory Care " AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation" including "LIMITATIONS OF PROCEDURE/VALIDATION OF RESULTS" <a target=_blank class=ftalternatingbarlinklarge href="http://www.rcjournal.com/cpgs/etehdcpg-update.html">http://www.rcjournal.com/cpgs/etehdcpg-update.html</a>

You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.
 
L

LisaV

New member
Anything that effects how much oxygen you can get into your lungs will effect the readings (that includes the small things you noted). The real concern is that other than bad lung function per se, the thing that is most likely to effect the reading is heart damage.

See

Causes for Low Oxygen When Heart Rate Increases <a target=_blank class=ftalternatingbarlinklarge href="http://www.medhelp.org/forums/cardio/archive/10845.html">http://www.medhelp.org/forums/cardio/archive/10845.html</a>

How Oximeters Work and What Effects Their Readings <a target=_blank class=ftalternatingbarlinklarge href="http://reviews.ebay.com/Pulse-Oximeters-FACTS-Guide_W0QQugidZ10000000001217352">http://reviews.ebay.com/Pulse-...ugidZ10000000001217352</a>

Reprinted from Respiratory Care " AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation" including "LIMITATIONS OF PROCEDURE/VALIDATION OF RESULTS" <a target=_blank class=ftalternatingbarlinklarge href="http://www.rcjournal.com/cpgs/etehdcpg-update.html">http://www.rcjournal.com/cpgs/etehdcpg-update.html</a>

You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.
 
L

LisaV

New member
Anything that effects how much oxygen you can get into your lungs will effect the readings (that includes the small things you noted). The real concern is that other than bad lung function per se, the thing that is most likely to effect the reading is heart damage.

See

Causes for Low Oxygen When Heart Rate Increases <a target=_blank class=ftalternatingbarlinklarge href="http://www.medhelp.org/forums/cardio/archive/10845.html">http://www.medhelp.org/forums/cardio/archive/10845.html</a>

How Oximeters Work and What Effects Their Readings <a target=_blank class=ftalternatingbarlinklarge href="http://reviews.ebay.com/Pulse-Oximeters-FACTS-Guide_W0QQugidZ10000000001217352">http://reviews.ebay.com/Pulse-...ugidZ10000000001217352</a>

Reprinted from Respiratory Care " AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation" including "LIMITATIONS OF PROCEDURE/VALIDATION OF RESULTS" <a target=_blank class=ftalternatingbarlinklarge href="http://www.rcjournal.com/cpgs/etehdcpg-update.html">http://www.rcjournal.com/cpgs/etehdcpg-update.html</a>

You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.
 
L

LisaV

New member
Anything that effects how much oxygen you can get into your lungs will effect the readings (that includes the small things you noted). The real concern is that other than bad lung function per se, the thing that is most likely to effect the reading is heart damage.

See

Causes for Low Oxygen When Heart Rate Increases <a target=_blank class=ftalternatingbarlinklarge href="http://www.medhelp.org/forums/cardio/archive/10845.html">http://www.medhelp.org/forums/cardio/archive/10845.html</a>

How Oximeters Work and What Effects Their Readings <a target=_blank class=ftalternatingbarlinklarge href="http://reviews.ebay.com/Pulse-Oximeters-FACTS-Guide_W0QQugidZ10000000001217352">http://reviews.ebay.com/Pulse-...ugidZ10000000001217352</a>

Reprinted from Respiratory Care " AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation" including "LIMITATIONS OF PROCEDURE/VALIDATION OF RESULTS" <a target=_blank class=ftalternatingbarlinklarge href="http://www.rcjournal.com/cpgs/etehdcpg-update.html">http://www.rcjournal.com/cpgs/etehdcpg-update.html</a>

You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.
 
L

LisaV

New member
Anything that effects how much oxygen you can get into your lungs will effect the readings (that includes the small things you noted). The real concern is that other than bad lung function per se, the thing that is most likely to effect the reading is heart damage.

See

Causes for Low Oxygen When Heart Rate Increases <a target=_blank class=ftalternatingbarlinklarge href="http://www.medhelp.org/forums/cardio/archive/10845.html">http://www.medhelp.org/forums/cardio/archive/10845.html</a>

How Oximeters Work and What Effects Their Readings <a target=_blank class=ftalternatingbarlinklarge href="http://reviews.ebay.com/Pulse-Oximeters-FACTS-Guide_W0QQugidZ10000000001217352">http://reviews.ebay.com/Pulse-...ugidZ10000000001217352</a>

Reprinted from Respiratory Care " AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation" including "LIMITATIONS OF PROCEDURE/VALIDATION OF RESULTS" <a target=_blank class=ftalternatingbarlinklarge href="http://www.rcjournal.com/cpgs/etehdcpg-update.html">http://www.rcjournal.com/cpgs/etehdcpg-update.html</a>

You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>



You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.</end quote></div>

LisaV,

I totally agree and this is why I'm working closely with the docs and insisting on an exercise study to see what is going on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Your first two link do not work. Can you try linking me to the articles again?

Thank you,
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>



You need to work with a doctor and the labs to find out why you are desating during exercise. IMHO it is not something for you to self-diagnose, treat, or ignore.</end quote></div>

LisaV,

I totally agree and this is why I'm working closely with the docs and insisting on an exercise study to see what is going on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Your first two link do not work. Can you try linking me to the articles again?

Thank you,
 
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