When I used O2 for the first time last year I felt devistated. I thought of it as another "setback" & 1 foot closer to the grave. I came to realize with support from my doctors & office staff as well as my personal experience that it does help. That it eases the struggle to breath. So this time around I am suppose to be on O2 24/7 until further notice basically. I am getting the portable gadget tomorrow, but had ???. Tho I am not gasping for air like I was last year or last week, I definitely feel the need to be on O2. I can get around doing small things without it, but I feel a big difference when I have it on & doing the small things. The big things is a must. Anyway......all this time I am thinking that its "normal" to breath the way I do without the O2. Once adapted (unless I am really bad) to breathing a certain way I dont feel the need for O2 UNTIL I use it. Then I feel the difference. I keep repeating myself sorry. My basic ??? is how much "tolerance" or lack of do you or should you deal with before relying on O2. Like I said I can get around without it, but feel a BIG difference if I use it. Is this normal? Is this to be expected? Is this something to worry about? Does anyone understand my post???!!!!!!!!!!!
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???? about O2
- Thread starter JazzysMom
- Start date
sarabeth87
New member
i've only been on 02 one time and that was when i had sinus surgery. that was the GREATEST i have ever felt in my life. i wouldn't want to be put on it bcuz i would feel like you do being 1 foot closer to the grave, but if i needed it i would definitely use it to give my lungs a break. right now i'm sick with a sinus infection or something, and some 02 would be great, but i'm not at the point where i really have to have it right now.
JennifersHope
New member
Hey Mel,
I know what you mean. Although my lung condition overall is in great shape (steroids makes the inflammation go away) My o2 sats are always a little low, especially at work, when I am running around. I pop on a reading and I can be satting in the low 90s.
Everytime I am in the hospital, I go on 02, I always feel so much better on it, but I don't really need it. I do think that our bodies become adopted to the 02 and then depend on it. It is a nice break for the body, because we don't have to work so hard to get the o2.
All that to say, I think you do get dependant on it but I am not sure.
I will ask at work later today and see...
I know what you mean. Although my lung condition overall is in great shape (steroids makes the inflammation go away) My o2 sats are always a little low, especially at work, when I am running around. I pop on a reading and I can be satting in the low 90s.
Everytime I am in the hospital, I go on 02, I always feel so much better on it, but I don't really need it. I do think that our bodies become adopted to the 02 and then depend on it. It is a nice break for the body, because we don't have to work so hard to get the o2.
All that to say, I think you do get dependant on it but I am not sure.
I will ask at work later today and see...
Eveyone is dependent on O2;however, what I have found is that body gets used to us having lower levels of O2. The body adjusts. When you go on O2 your body and heart can relax the way it should be. Once you come off the O2 and your sats are low again, the body needs to go through that adjusting period again to get used to it and you feel the pain of building your tolerance to low O2 back up. Anyway, that is my opinion on this from my trials, etc.
Being on O2 sucks and is a pain in the butt, but when you need it you need it. By using O2 you may just be increasing your life and life quality, because if you need it and you keep putting it off you are stressing your other organs and may lead to other complications. Changes are your quality of life is suffering too. The timing is key, you don't want it before you need it, but you don't want to wait too long either.
Being on O2 sucks and is a pain in the butt, but when you need it you need it. By using O2 you may just be increasing your life and life quality, because if you need it and you keep putting it off you are stressing your other organs and may lead to other complications. Changes are your quality of life is suffering too. The timing is key, you don't want it before you need it, but you don't want to wait too long either.
The thing about being on O2 is what your O2 sats are. If they are under 90 then your body starts "using itself up" to keep on going. Having low sats hurts your heart and makes it impossible to build muscle - it can effect your brain. (Think of the bad effect of high mountain climbing on folks who don't use oxygen.)
So by using additional oxygen when you need to you are not so much helping your lungs as you are protecting the rest of your body from the ill effects of oxygen shortage.
The best thing to do is to use what you need to be really really active and to get in the best physical condition that you can possibly be in.
In my experience, folks who are new to using oxygen out in public talk alot about "not wanting to become dependent" etc., but truth be told they are just hating the fact that their disability (damaged lungs) has become visible. (At least that was how my husband first reacted.) We all are dependent on O2, after all, and the docs prescribe it because your sats are so low that it is hurting your heart.
Look at it this way, I have a friend who was put on O2 24/7 after a bad COPD exacerabtion that included a pseudomonas infection. When he was first on it, he was basically just tottering around on his walker. After staying on it and serious exercise he got so he could go bike riding with his wife. (While bike riding he needed his O2 up to 4 ). Which is better? Tottering around, damaging his heart with every step? Or bike riding and gaining cardiac strength from that?
Being on O2 when you have low O2 sats does not mean that you have one foot closer to the grave. What will get you closer to the grave (from congestive heart failure) is NOT using O2 when you have low O2 sats.
So by using additional oxygen when you need to you are not so much helping your lungs as you are protecting the rest of your body from the ill effects of oxygen shortage.
The best thing to do is to use what you need to be really really active and to get in the best physical condition that you can possibly be in.
In my experience, folks who are new to using oxygen out in public talk alot about "not wanting to become dependent" etc., but truth be told they are just hating the fact that their disability (damaged lungs) has become visible. (At least that was how my husband first reacted.) We all are dependent on O2, after all, and the docs prescribe it because your sats are so low that it is hurting your heart.
Look at it this way, I have a friend who was put on O2 24/7 after a bad COPD exacerabtion that included a pseudomonas infection. When he was first on it, he was basically just tottering around on his walker. After staying on it and serious exercise he got so he could go bike riding with his wife. (While bike riding he needed his O2 up to 4 ). Which is better? Tottering around, damaging his heart with every step? Or bike riding and gaining cardiac strength from that?
Being on O2 when you have low O2 sats does not mean that you have one foot closer to the grave. What will get you closer to the grave (from congestive heart failure) is NOT using O2 when you have low O2 sats.
lovingBenandCambree
New member
I do know that you cannot physically become dependent on O2. I have asked. However, Mentally is a different story. I think that mentally I often times think that I need it when really I am fine. Does that make sense?
Em
Em
I strongly second everything LisaV said. I have been on and off O2 over the course of the past 9 years, and at first was very reluctant. Now, when I need to be using it (which is when I notice that my heart is pounding just from walking from one place to another), I just hook it up and cart it with me everywhere. I take it to work, attend meetings with it, and even drag it along to my son's soccer games. Everyone is used to seeing me with it. I just remind myself that it is saving my heart, my lungs and my brain cells. Even if you need to use it for several months 24/7 while you get your strength back, remember that this is a few months out of many years. You're in this for the long haul!
Debi
54 w/cf
Debi
54 w/cf
I'd rather hurt my heart and let my organs suffer, then walk down the street putting O2 tubes in my nose. Physical suffering is nothing compared to the emotional one. When I reach that stage i'll let myself go as simple as that. I dont want people giving me all sort of looks. I cant do many activities now bec of the low pfts, but I sacrificed them bec I dont want to end up in a club dancing with tubes in my noise. Its just so humiliating and a self torture. My dignity and pride comes before my life.
OH Rami I dont give a damn what people think unless it affects Jazmine. I went to the grocery store today with it & was asked whats up. I told them that I have an inherited illness that I cant pretend not to have anymore. Some days I need it & some days I dont. My concern was only the physical aspect. It seems like I cant tell the difference between actually needing it & preferring it in a way!
You might not be able to tell the difference because you are so in tune with your body and breathing after all of these years that when you"want" O2 it is because you "need it".
If you really want to monitor whether or not your sats are dropping below that magic 90 number (or whatever magic number your doctor wants you to stay above), ask your doc to write you a script for an oximeter and use that to monitor your sats. There are some really really small ones that you can even wear around your neck under your clothes - like the Nonin ones mentioned here <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmonarypaper.org/main.asp?CatID=33&ArticleID=2">http://www.pulmonarypaper.org/...p?CatID=33&ArticleID=2</a> .
If you really want to monitor whether or not your sats are dropping below that magic 90 number (or whatever magic number your doctor wants you to stay above), ask your doc to write you a script for an oximeter and use that to monitor your sats. There are some really really small ones that you can even wear around your neck under your clothes - like the Nonin ones mentioned here <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmonarypaper.org/main.asp?CatID=33&ArticleID=2">http://www.pulmonarypaper.org/...p?CatID=33&ArticleID=2</a> .
If you are at the point of needing O2, I doubt you will be able to comfortablly do much dancing without it, sorry to say. O2 will let you do things you can't without it. You get used to it, people are understanding, and sure you get some looks but who cares. Once people see you with it once, it is not a big deal. You can only stay home for so long and if it means having to take 02 with you so you can go out and enjoy life with your family and friends then it is worth it. Good Luck.