Normally, I might overlook something like this article, but since I found it through HelpHOPELive (who helps manage my transplant fund), I decided to take a look (it came through their Twitter feed). I’m glad I did, because I know that even though this is not “prime time” yet, it makes me hopeful. The reason for that is, while I love what oxygen does for me, I loathe it because it is such a “shell game” & pain point both financially & practically. I can’t stand the “politics” & “business” coming in between what people really need when they need it. It’s a true headache & hassle to stay mobile as needs change & usage of this vital life gas increases with advancement of illness.
I’ve consistently complained to any healthcare professional, oxygen supplier/durable medical equipment provider, insurance company, or any advocacy organization that will listen. My blue face garners sympathetic looks & solidarity in words but is primarily a fruitless exercise.
While respiratory therapists are usually the most sympathetic, they have no good solutions & their hands are tied because the bulk of oxygen decisions are dictated by Medicaid & Medicare. Which in turn, influences how private or group health insurance coverage is dictated. If they don’t want to reimburse or cover something, it doesn’t happen, period.
I recently switched concentrators because I needed more oxygen than my last machine could offer. I needed a machine that did both intermittent & continuous oxygen flow. This is the one I have now:
While it gets me where I need to go & I can generally plug in somewhere (or charge it in my car), it’s not as easy to haul around as my Activox was. It’s also not as quiet. I get maybe 45 minutes to an hour between charges depending on the setting (versus the 4+ hours I usually had on my other machine). I understand the reasons for this as far as the machine mechanics go, but still it is sometimes problematic.
To exercise now, I have to use an oxymizer, which looks like one of the ones shown below. (I’m not a vain person but I think these are ugly as sin. Also generally uncomfortable to wear for extended periods). This allows me to use less oxygen to exercise which I need because the highest setting on this portable is 2 continuous flow, and I typically require 3 continuous flow or more on a standard tank. This allows me to get that higher flow with a smaller setting on my machine.
The problem is that while they do make more energy efficient & smaller home concentrators, as well as certain models of portables that go up to 3 liters continuous, my oxygen suppliers don’t stock any of them. So I can’t get or use them without shelling out the full cost myself.
It’s different too than getting a walker, cast, brace, or another piece of medical equipment. I can’t have them special order it for me & have it billed through my insurance. If I use a manufacturer then I have to worry about what if something goes wrong? How many days is it going to take to fix? What will my back-up be? Will insurance pay or only rent (more often the latter is the case). Is it even an option to use my insurance? Then do I need more tests or a new prescription from lung doctor (or both) before I can even order it?
So I’m really going to be hurting & probably going to be going around lugging tanks & bottles if my needs change again or if this machine & this type of “conserver” are not enough later on.
Liquid oxygen is lighter & easier to carry (also the flow settings go higher) but most suppliers won’t offer or deliver liquid anymore unless a patient originally started out with it. Doctors won’t write for it because they don’t want to fight for coverage or fight to validate the need for the prescription. This is all because Medicare/Medicaid stopped paying for it first.
As a result, overall if you need over 3 liters of continuous oxygen to do anything (walking/exercise) there currently are little to no good oxygen options on the market, unless you pay for it yourself & that’s crazy expensive to do. So basically, as the saying goes, “you’re screwed”. You’re stuck lugging around a cart with a big tank & carrying at least 2-3 of those wherever you go. How much life (hours) you get out of those tanks too depends on how much you need.
So as a result, this was why I was so excited to see this article because it’s a practical & real solution if it is actually developed. Plus there’s incentive outside the lung disease, healthcare, & medical communities for something like this to come to fruition which is always a plus. It could piggyback on the fitness, recreation, & sporting goods markets so business heads shouldn’t say it won’t make money.
With crowdfunding of devices on the rise, I really hope someone does take a chance & develop this because it would be a lifesaver in more ways than one.
It’s funny how the sicker I get & the heavier it feels to even lift my hands above my head without getting short of breath or having oxygen level spikes; how much heavier the equipment that is supposed to help keep me mobile gets. I understand why, but there needs to be another solution out there that’s a truly accessible & practical alternative.
I hold out hope for oxygen users everywhere (present & future).
For you skeptics, here’s verification from Snopes that this is under development in Denmark. Or at least it was as of 2014.