Resting vs. Max heart rate

LisaV

New member
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.
 

LisaV

New member
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.
 

LisaV

New member
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.
 

LisaV

New member
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.
 

LisaV

New member
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.
 

LisaV

New member
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.
 

coltsfan715

New member
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey
 

coltsfan715

New member
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey
 

coltsfan715

New member
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey
 

coltsfan715

New member
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey
 

coltsfan715

New member
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey
 

coltsfan715

New member
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey
 

ladybug

New member
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>
 

ladybug

New member
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>
 
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