Starting O2

[ladybug]

Hi,

So, I'm thinking of asking my doc for O2 to have on hand for times when I'm feeling short of breath and especially for when I know I'm going to be somewhere around smoke (to take before and after).... living in Vegas, even the grocery stores have smoking, so I would hook up to the O2 for several minutes before my shopping and then if I felt SOB, I'd hook up when I got home. I'm also looking into using it at night or during exercise if I need it.

My big questions are these:

1. How do you know when you should take O2 and what to use it for?

2. Will it be beneficial to wear before and after going somewhere smokey or would I have to wear it during the shopping experience? For example, will just the ozygenation pre and post make me feel better?

3. Can I just email a doc and let them know I'd like to start it and have them set it up (amount, etc.) through a home health agency, or do I have to go in to have a "workup" done to determine amount, etc.?

4. Do I need to worry about feeling crappier when I"m off oxygen once I start to take it? Basically, will it accentuate the SOB when I'm not hooked up, so I'll feel like its really hard to breathe since its so easy with O2?

5. Once you start O2, can you ever go off it and still feel well? For example, if I notice it really helps give me energy and a "boost" before going somewhere smokey, but down the road decide I no longer want to use it, will I get a much worse reaction to smoke than before I started it?

Thanks for any info ya'll can give. This is all so new to me, but I know I sometimes feel VERY SOB during the days and when I'm exhausted, and would really like to have it on hand if I'm needing it. I also just got a pulse ox. Are they good measures of when you should put it on?

Thanks-

 

[JazzysMom]

Well I can tell you that using O2 makes you feel wonderful. Its a natural broncial dialator. I never knew I needed it until I actualoy used it then I felt the difference. Of course by the time I needed it I was really bad & the office staff took one look at me & I guess the bluish tinge to my skin put them in a panic & the slapped the O2 mask on me. I do have O2 at home for when I need it. My O2 just contacted the home health/O2 agency & I got it. There is no workup per say. Dependance....now I have got conflicting stories on this. I felt like I would be dependant on it for a long time last year. Everytime we tried to ween me off my turning down the liters I would feel like someone was sitting on me. I did get off of it tho. I still have it at home & I now have Portable O2 as well. This is just in case. I dont need it everyday going by how I feel. If I ever remember I am going to get an O2 sat monitor so I have somethign else to go by, but you usually can tell by your breathing or struggle there of. As far as the smoky areas. Its probably best to use it WHILE in them that way you arent getting the smoke into you as much to begin with. Of course the O2 will make you feel better before/after, but it will also prevent you inhailing so much overall if you use it DURING. Hope this helps a bit. I am still a novice at it, but I am sure others that have used it more can help better!

 

[luke]

Sonia,


In order to get the insurance company to pay for your O2 you must be "qualified". There are several ways to do that but normally a saturation done at the office is the easiest way(your sat has to be 88% or less). If that doesn't work they can do a walk test(just like it sounds they do a SAT level why you walk around) and the last is the overnight oximetry. You state you have an oximeter..are your SAT's normally low?
Supplemental O2 should be used to compensate for low oxygen in the blood. You wouldn't use it to to prepare yourself to go to a smokey place...not to say you wouldn't need it when you got done or while you were there. You may need it when you shop but maybe not while at the house sitting around. Some people only use it at night or during exercise, you don't have to use it continuous. A common statement/question I always heard at the hospital was I don't want to get addicted to O2. My answer... we all are addicted to O2... without it we all die. The difference is that people that require supplemental O2 but do not have it always feel bad, but...it becomes their normal so they are use to it. Once they use the O2 they feel more normal and don't want to go back to how it was before O2. As far as how much you should use....your doctor should check your SAT's with and without O2 when it is odered so he can titrate the O2 until your SAT's stay good. Unfortunately doctors don't do that they just say...2 Liters and send you packing.


Sorry for the lack of flow to my post....I was trying to answer everything and seemed to jump around a bit.


Luke

 

[Landy]

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

I also just got a pulse ox. Are they good measures of when you should put it on?



Thanks-</end quote></div>


I've noticed a few people mention they have the pulse ox. I checked into getting one years ago & insurance didn't cover it at that time, or so I was told.....is this still the case?
As far as being a good measure of when you should use oxygen, I would say that "yes" it would be a good indicator of when 02 should be used in my opinion.

 

[NoExcuses]

I just got my pulse-ox a week ago.

My insurance covered the cost 95% with a prior auth (just stating that I have Cystic Fibrosis). My NP was hesitant to Rx for one because she says it's never covered. But mine was.... you never know unless you try!

I got mine to make sure I don't de-sat while exercising.

Currently I have an %SpO2 of 96%. And for whatever weird reason it goes up when I exercise! <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[ladybug]

I also had to get a pre-authorization from my insurance to get a pulse ox. They covered only a very small portion cause I need to meet my deductible for medical equipment, but they DID cover it. I had to have all sorts of letters written and a walk test done showing that my O2 dropped to 84% with walking (I don't think it always does this, however). Once I did all that, it took my insurance a couple weeks to decide I could have it.

 

[catboogie]

sonia, just remember, you can't actually use the oxygen around people who are smoking or you may accidentally blow yourself up! it is very flammable, isn't it??

laura

 

[luke]

Laura,

Yes, O2 is flamable but the real fun is that under pressure(in tanks) it is combustible. The general rule is to keep it 8 ft from a flame or electric outlet. It really only matters for tanks of course because concentrators will just flip a breaker if they ever caught fire and they aren't combustible any way.


luke

 

[Joanne]

Actually O2 is not flammable... but it is better to be weary of it, than have an accident.

O2 can accelerate a fire. Like when mechanics weld, they are using 2 gases to cause a very intense flame. There are lots of people that smoke and are on O2... not unheard of.

Joanne Schum

 

[luke]

Joanne,

It is easier for RT's and other health care professionals just to say that O2 is flammable rather than getting into the chemical properties of O2 as an accelerant. But...literally you are correct. But an O2 enriched environment definitely increases the probabilities of fires starting and that is why I stated as such


Luke

 

[lovingBenandCambree]

Sonia,

I know I have told you a bit about my experience with O2, but I was on it continuously for over a year and now I only use it to exercise and sleep, but I feel great during the day when I dont use it. You can come off of it, it isn't always easy, but it does happen.
I haven't read all of the response, but wanted to say that using it before and after wouldn't be that beneficial, it doesn't stay in your system, once you take it off your lungs start working on their own again and your sats go down to what they were without it. Anyway, good luck.

 

[Debi]

I have been on and off O2 for the past 7 years. I use it when I have flareups and usually for many months afterwards until I build my lung capacity back up again with exercise. I use it when my saturation levels drop below 90%. I have a concentrator, a regular size portable system, and a small portable system. I also have an conservation system, which releases the O2 only upon inhalation rather than constantly. What system I use depends on how bad my lungs and general health are at the time. Right now I have been on O2 continuously for about a year - it was a very bad health year for me. I am being too lazy right now to ramp up the exercise.

The difference in how you feel when you use it because you need it is remarkable. You do need to pay attention, though, to make sure you are using the appropriate flow rate for your levels. It is possible to have the flow rate too high, in which case you run the risk of retaining carbon dioxide and really getting into trouble.

Debi
54 w/cf

 

[ladybug]

Thanks, everyone!

Here is a bit of what I plan on doing and why....

I want to ONLY use O2 after being somewhere IF and when I get winded. I usually notice after 1/2 hour at a casino with friends (seem to ALWAYS have to go to them when people come to visit Vegas) I am VERY SOB. I do NOT notice it in the casino usually. It seems that when I get home and try to relax, all of that smokiness is probably "trapped" in my lungs. So, I only want to use the O2 if I feel really crummy when I get home to help me relax and feel a bit better for sleep (though I don't plan on using it to sleep).

I do not want to use it at casinos at this point cause, as stated earlier, I just don't seem that SOB until later. I know many will say I should have it on in casinos, but I really don't want to do that at this point, as I still like to appear "normal" and when my hubby and I actually DO get dressed up to go out (as rare as it does occur), I don't want to strap on O2 since I don't wear it any other time. I like to feel free when we go out, and I know wearing O2 when I don't necessarily really need it will probably bring me down (its a mental thing too). I know its very vain, and I don't want to offend anyone, but for me, I just will not wear it in a casino. If it gets to that point, I simply won't go to the casino.

I know at home, when sitting around, my O2 is still in the low 90's to mid 90's, so I don't think it necessary to start wearing it all the time in my case. My sleep is not interuptted at all at this point and my exercise (though difficult at times) feels refreshing, and I feel ok after my cool-down, so I'm not ready to take the leap and use it for sleep or exercise yet either. I really don't feel that SOB that often, and don't want to add yet another CF "therapy" to my daily regimine (I"m sure ya'll understand) until its necessary. I agree I may feel MUCH better wearing it, but right now I don't know any different and don't feel too bad.

I simply wanted to have it for "relief" if feeling SOB when returning from a hard workout, smokey casino, etc.... when I feel I need some O2. I usually use an albuterol treatment and that does NOT help, so this would be the next step. I feel I wouldn't use it very often, and certainly do not want to get (at this point, since I am still 96% sats.) "dependent" on the feeling O2 gives me. I realize using O2 as a "relief" may not work, but I see athletes using it all the time when off the field so they can perform better when on the field, so I assume the same would be true for me. If I can use it even for a short while and perform and then use it again, I'm at least taking the pressure off my heart and lungs working so hard for some of the time. Ya know?

Maybe I have it all wrong, and I truly apologize for this post getting seriously out of hand as far as making a long story short. I really appreciate ALL the great insight into this topic. I have emailed my CF nurse (400 miles away) to get her impression for my pre and post casino O2. I'll keep ya'll posted what she says/does. Perhaps I am completely incorrect, but my biggest thing is just having it ON HAND just in case, ya know?

I mean, aside from casinos and exercise and all that, it probably isn't a bad idea for me to have it on hand just in case I need to make that 400 mile drive to get admitted for a tune-up and am really having a tough time breathing. So, even for that, I think it would be beneficial.

Thanks again-

 

[lovingBenandCambree]

I know Luke already mentioned this, about having a study done. I had to have a sleep study, which was having the oximeter on my finger all night. I was totally unaware that my sats dropped that low while I was sleeping. It got down to about 84 and I had been sleeping great without any problems at all. I am sure that they will have you do that. Especially for insurance purposes. The insurance needs to have proof that it is needed. Anyway, hope it all works out for you.