OXYGEN ???

[cindi o'h]

hello All.

I have a question regarding oxygen. I was tested a month or so ago at the pulm. while walking for as fast as I could for as far as I could before collapsing. It was determined that I didn't need oxygen.

But, I think I could use some at least while I am exerting myself. I go up one flight of stairs and then I am all done in. I sit and huff and puff and pee my pants and huff and puff for another few minutes before I can catch my breath. I think if I had a hit or two of O2 before I start my ascent, then I wouldn't be peeing my pants all the time.

Also, I would like to move my body more, but hesitate because of the consequences.

My question is this. Do you think I can have some O2 for when I am exerting myself? Does anyone just take hits for when they are on the move?

Thanks.

Cindi o'h

p.s. I was supposed to start pulmonary rehab., but haven't because of the house thing. Also was supposed to start on a nebulizer at home but didn't because of the same reason and the $$$ issue. Once I get moved, I will be more diciplined about following through and getting on a regular exercise program that makes sense to me.

[Patkid]

No helpful insight on our end.........but lots of love, you know!!!

Love

Pat and Brian

[Fay A.]

Cindi,

You can actually do real harm to your body-not just your lung(s)-if you receive supplemental oxygen when it isn't needed. Please deal with the nebulizer/Pulmonary Rehab issues first.

When they were doing the PFTs during physical exertion did they have you doing the bike riding or treadmill test while hooked up to various monitors, followed by arterial blood gas tests? Because if all they did was use the Pulse Ox finger monitor then a lot of things can affect the reading on one of those. Those things work by measuring color and light on the fingertip. Not a great way to determine if someone needs supplemental oxygen only some of the time. And that need can be real.

Thinking of you and hoping that you are soon settled.

[richinsdakota]

Yea, I know the feeling; better now, but when I had the chemo pulmonitis, or whatever it was...I hit emergency room for a little oxy one nite...they measured B/O level at 89 %. 88 required by ins. to get oxy. of course. Im better now that lung is cleared up, but can identify with stairway exhaustion,etc., still have that. I just have to live with SOB, whenever I exert, I guess. sigh.

So, dunno the answer, they are stingy about oxy., and there doesnt seem to be a small tank for just such emergencies as you describe, far as I can find out. I suppose oxy could do some harm, ...tho it doesnt seem like a few lite hits would hurt at SOB time...dunno..ask the experts?

Hope you get better answers...Rich B.

[Addie]

Another thought from someone who knows nothing about needing oxygen...but who has had some noticeable sob lately......due to low bloodcounts!! Mainly going up and down the stairs! I huff and puff.

Before you presume anything....when was the last time you had a CBC?

[cindi o'h]

Thanks

Fay..nothing fancy as you suggested just the pulse ox meter on the finger with me shouting out the readings to the tech. I am so sick of being short of breath. It is affecting my quality of life more and more. My muscles are wasting badly between not being able to exercise and all the prednisone I am on. There is actually fat on my legs where my muscles used to be. It is gross. I used to be an athlete.

Don M... right. I am with you on the SOB thing...just for emergencies (like climbing stairs!!! hehehe)

And, Addie, you might have something there with the CBC. It did cross my mind this morning as I was reading your pitiful counts. I can well imagine you are short of breath.. Don't know why you would be still kickin' either..must be the grape juice.

Cindi o'h

[Fay A.]

Cindi,

From what you are describing you sound like you should have access to supplemental oxygen. I would like to suggest that you insist that proper Pulmonary Function Tests be performed, before they deny O2. Seriously, I don't know if you remember back when DeanCarl was having trouble getting authorization for a scooter, but those folks were making their determination based upon improper information. He and Gay disagreed with the VA and he got his scooter, with help from his Doctor.

Bottom line, I'm not especially keen on have arterial blood gases drawn, or riding a bike for however long it takes, but they give my Pulmonologist the right information about me. I have supplemental oxygen, because sometimes my sat levels drop to the low 80s. I can be sitting still, i can be walking. Makes no difference. When they drop I am SOB and need the O2. Period.

Hope you get some help, Cindi.

[cindi o'h]

Thanks, Fay. They did draw arterial blood gases and they were within normal limits. It was supposed to hurt and I didn't feel it. So that was good. With the arterial blood gas do you think I would still need the fancy bicycle test with the clothes pin on the nose and all that? I am really okay at rest, it is just when I move that I have trouble. Makes me not want to move. Which makes me worse. I feel like I am spiraling downwards.

The good part is that the cardiologist gave me the go ahead on moving and said not to worry about my heart. So that was a load off.

Thanks again, Fay.

cindi o'h

[shineladysue]

Cindi,

Mike is on oxygen 24/7. He was put on after going through a series of qualifying tests. The pulmonologist put him through pft, 6 minute walk etc., testing his oxygen level at rest. They also sent him home with an all night monitor to wear and turn back in. He did poorly , even at rest. He scored , with the finger thingy... 89, even at rest and went down to 80 when walking . It wasn't , as fast as he could, it was at his own pace and he couldn't finish the 6 minutes. I only know that he can't exert himself , at all, and just getting around is done slowly. I would also like to add that the nebulizer can be a god send. He and my mom (mom has emphysema) use one and it helps to keep those airways open. That one is a must. Get that as soon as you can. I think you may greatly benefit from it. Hope you can read all this . It's kind of run on.. Hoping you can get some help. Not being able to breathe is the pits.... Take care Cindi.

Love ya,

Sue

[mayos]

The 6 minute walk tests done by pulmo docs are O2 exertion tests of sorts. I have one of these walks scheduled each visit and I'm prescribed nightly O2 and "PRN" portable O2 on exertion. Please address these SOB issues before more damage is done to your lungs.

[cindi o'h]

Yes.. I was able to complete 2.5 minutes of the 6 minute walk before I collapsed.

I will check out the nebulizer now harder than ever and I will also pound harder about getting the oxygen. Hopefully, it will help to make me feel better and help me to recover.

Is O2 therapeutic as well as just making things easier?

Cindi o'h

[flacrakr]

Cindi:

I can definitely relate to the huffin' and puffin' up stairs. I just have to go pretty slow if I want to have enough breath to talk to anyone once I've reached the top. I don't know if a couple of hits of O2 would be that bad or not. I do see football players on the sidelines puffin' on the O2 when they're winded. Maybe its a mix of air with more O2 in it.

Here's hoping all goes well.

Oliver

[mayos]

I don't think administration of O2 is presently considered a cure of any sort.....maybe more of a "crutch"....since less exertion on our hearts nets us healthier bodies. Also...it's proven that supplemental oxygen decreases allover body pain simply by the O2 reaching peripheral areas...enriching blood vessels that otherwise would be oxygen starved. Each doc has his own personal take concerning oxygen use. My pulmonary hypertension specialist doesn't believe PPH patients are helped by O2 at all. For myself....after 4 yrs of oxygen therapy I'd have to admit I wouldn't want to be without it. A sleep study netting O2 levels below 89 warrants a nite time O2 concentrator...and a pulse ox reading of the same during a 6 minute walk test is grounds for portable O2. I commend you for pushing for answers concerning your own SOB troubles. Although getting used to being on O2 can be a struggle...quality of life issues should really come first. Good luck...