Breathing during excerise

[emmayes]

Thank you for all your help!

[Pugsy]

Now, a BiPaP can’t be used outside to walk with, and the pressure is too much to move with.

Why not?
The pressure settings for inside the house aren't going to be any different than outside the house unless you change them?
Now power to the unit would be an issue...gotta have the juice to make it go but that's doable with small batteries maybe.
There are some machines that can use battery power with batteries that aren't huge and heavy. Now they may not last all that long but since you are only wanting for use during the day for a period of time away from the house...might work out.

What pressure are you using anyway?
Do you have to have a humidifier?
Do you use the machine all the time while awake or just on an as needed basis?

You won't be able to go down the nasal canula road if you are thinking cannula like O2 tubing because for cpap/apap/bipap to work there has to be a sealed circuit and you can't get that with a tiny canula...gotta have some sort of cpap mask involved. Now there are some cpap masks that actually have little prongs that go up inside the nostrils but they aren't tiny and they have to inflate for them to created a sealed circuit.

[Julie]

I suggest you PM a member called Madalot because she has similar (if more advanced) issues to yours and she uses a Trilogy machine at home - may have some advice for you.

[emmayes]

Thank you both.

@Julie Thank you I shall PM her!

[Madalot]

Hi and welcome to the forum!

I have the same issue with breathing issues during physical activity - walking, reaching, etc. They called it "exercise intolerance." I get very out of breath and weak during any physical activity.

That being said - it's never been suggested that I use a machine during the day. My nocturnal breathing issues are what prompted the Trilogy, using AVAPS, at night. I don't do anything during the day other than STOP doing the physical activities that make it impossible to breathe. And to that end, I use a power wheelchair 95% of the time.

Because I have no experience with what you are asking, I'm afraid I don't think I can offer much. I'm very sorry.

[Matt00926]

You would need a portable ventilator that has a battery. They usually mount to the person's wheelchair so I'm not exactly sure how it works if the person is still able to walk around. I can't imagine walking around with a portable stand like in the hospital would be easily doable. The brands that I've heard of are the ResMed Astral and also the CareVision LTV. They are usually volume based so the pressure would fluctuate to reach a certain target based on your efforts.

You could get a portable oxygen concentrator but that only assists with oxygenation, not ventilation, and could aggravate CO2 levels if you're a retainer.

I'm curious how it was determined that you don't need to use a Bi-level device at night. If you have muscle weakness, by resting your muscles at night it would probably improve daytime functioning.

[emmayes]

Thanks Madalot, I understand you only use it at night.
Thank you for all your help!
By the way; trying extra oxygen will probably be more dangerous than trying bipap?

[Julie]

As far as 02 goes, you should talk to your MD, but C- or bipap would be impractical in daytime as the machine weighs a few lbs and must be plugged in a few ft away to operate, never mind the mask wearing and 6' long hose attached! Also, the machine's geared to work while sleeping (it doesn't know you're asleep, but does react to 'asleep' breathing patterns vs awake ones that are very different. Have you not seen a pulmonologist?

[emmayes]

As far as 02 goes, you should talk to your MD, but C- or bipap would be impractical in daytime as the machine weighs a few lbs and must be plugged in a few ft away to operate, never mind the mask wearing and 6' long hose attached! Also, the machine's geared to work while sleeping (it doesn't know you're asleep, but does react to 'asleep' breathing patterns vs awake ones that are very different. Have you not seen a pulmonologist?

Mine is not for sleeping, even though normally it is.
Yes my pulmo gave me the machine.

[Julie]

Of course, but I got the impression you want to wear it while exercising (whatever that consists of), which seems quite impractical.

[emmayes]

Of course, but I got the impression you want to wear it while exercising (whatever that consists of), which seems quite impractical.

I do yeah. And it is impractical, not to mention I would look stupid
But if something like that would help me being less homebound and able to walk more than I would take any funny looking and impractical thing for granted.
I just think being able to walk more would be good for my overall health.

[Julie]

How about a stationary bike? There are lots out there... check Amazon.

And again, the results you'd get, even if you did fig. out how to Cpap while exercising (even the bike or ?) would be so skewed as the machine 'does' sleep breathing tho' I get that you think it would help you breathe... but in fact all it does is apply a really little pressure to help keep your airway opening a bit more open... it does not equate to oxygen or any other magic pill.

[Madalot]

As a person in a similar situation, I question the feasibility of trying to do this. I admire your desire, I truly do, but I'm just not sure it's realistic.

I'm not sure they make a machine designed for this. Not saying they don't, but I've never heard of one.

Even if you could find a machine that would work, the settings on it would be difficult because your breathing would be incredibly variable depending on what you were doing.

I find myself breathless doing the normal stuff - walking the little that I can, making my bed, etc., thus why I do as much as I can do from my wheelchair, saving the physical stuff that I HAVE to do and taking it slow and in stretches as necessary. As an example, I just finished my bed and need to empty my dishwasher, but I'm taking a break in between the two chores to rest and catch my breath.

I just cannot imagine trying to have a bipap strapped to me at the same time.

[emmayes]

Very true.
But I simply feel the need to try it out. I am young and cannot imagine this being it. I believe there must be more possible.
(I do use a power wheelchair and all).

I wish it was easy to measure your co2. That way I could easily just try extra oxygen, test my spO2 and CO regularly if it’s all okay, and see if it helps.

[herefishy]

Could you pack your bipap and a battery in a backpack and carry it around?