Graduations & retirements are usually cause for celebration.
Except for this instance. I noticed after my evaluation that while my exercise tolerance had decreased somewhat from July (when I had the blip where I suddenly lost air), though I had recovered decently, I hadn’t completely rebounded. However, 2 liters during exercise seemed to only last me about a month or two. Now, I was pushing it with 3 liters being enough. This wouldn’t be an issue except my current portable oxygen concentrator (POC) tops out at 4 liters. I like having a cushion of a liter or 2 to spare.
This week that cushion evaporated. So now, I’m looking to upgrade. I figured I’d have to eventually but wasn’t expecting to this soon. Usually an “upgrade” in this instance is in fact a downgrade. More weight, possibly louder, have to pull it around rather than toting it on my back. More oxygen means more issues with battery life. So when I anticipated that 3 liters was approaching a bit too low of a saturation for my comfort zone, I mentioned it to my doctor at my evaluation. He didn’t sound surprised & agreed that I needed more. He wasn’t so sure it would all just resolve in a pulse-only machine like I currently have with just an extra liter or two either. He thought I might want to look at a machine that has both continuous & pulse flow now, especially continuous for exercise. The issue with that is, most of the “portable” continuous options top out at 3 Liters. (However, there are ways around that). But given the fact that most of those “upgraded” portables are over 10 pounds, well, that poses an issue. I could go back to bottles, but then I’d also burn through those more quickly on continuous or have to use larger tanks & pull them around like I would one of these concentrators anyway. I figured though, I better start researching this now & hacking it now before I had completely burned through 4 Liters & was forced to.
I’m not happy with my current oxygen supplier anyway. They were pretty rude to me (and my caregiver/bestie) from the start. This office didn’t seem to like that I’m one of those informed patients that asks a lot of questions & pushes for information on every available option before making a decision. I’m polite, but as a result of asking too many questions & them screwing up my first delivery (& me calling them on the mistake that caused it), I’ve been labeled “difficult”.
As a result, I decided either at the end of the year or when I needed to look at a different set-up I was going to leave them. Now is just as good a time as any I guess. I had only gone with them because between May and July (just before I got sick) I was doing a fair amount of traveling & needed something that could go on a plane and/or meet me where I’m at (in addition to needing something easy & convenient for exercise & improv). I wasn’t sure I could just do that with a local supplier since these were out-of-state travels mostly. I felt ok with going with them first too because they were in-network with my insurance & heard good things about other branches from other patients about how easy they were to coordinate travels & deliveries. However, in addition to the difficulties with the local office, I also had claim issues. My claims were backed up for 4 months because they failed to send in all the required information to the insurance company. I had to call them twice before that got resolved. I also had one instance where they failed to tell me that they only coordinated travel one-way & that I had to call the number on a concentrator (that concentrator was in California) to coordinate the return. That was a pain & didn’t seem right either. So these issues were ones that played a big part in my deciding to switch.
The two places I spoke with seemed to actually want my business or at least volunteered to research & see what they could provide in terms of solutions. One is another national supplier, another is local but I know how their rental options work. This local office was also extremely helpful with information when I was looking at potentially buying or trying to request a specific piece of equipment versus just renting a set-up. They seem to like that I’m educated & ask intelligent questions & if they don’t know they don’t tell me “no”; they research.
I see now though, that while it may seem like it costs more, I will have to rent versus buy because of the rate my oxygen needs are increasing at various intervals.
I knew this process would take a while to research options (or make the switch in transferring service), so I called on Friday knowing full well it would be sometime next week before I heard back from either but at least put it on the table & set out to gather some basic information.
What it’s looking like is a Sequal Equinox or Eclipse 5 as the probable solution to this dilemma. They are roughly both the same specification wise, it’s just the equinox is supposed to be a bit lighter & is considered newer. The continuous oxygen only goes up to 3L on both machines (which does irk me, why didn’t they make the Equinox a 5 Liter if it was considered an upgrade/updated model with better features?), but with an oxymizer pendant that could be potentially boosted further or I definitely could make it workable. However, the pulse settings go much higher (like up to 9L) which is a decent cushion to work with. Either way I feel like this might be worth the leap to now because I can get some mileage out of it.
Plus, if I have to be overnight somewhere, it can function the same as my home concentrator would. I wouldn’t have to have an additional stationary concentrator delivered to where I’m at, like I do now (which takes hassles out of last minute trips & visits).
(Pulse-only concentrators like my current “jet pack” are not generally recommended for sleep. I did it occasionally before I needed oxygen all the time, just on fluke overnights to be sure I wouldn’t unsafely drop if I started out low before bed and to have something when I didn’t want to bother with an overnight rental or dragging a stationary concentrator somewhere like a hotel where I didn’t trust it to be picked up or dropped off in timely fashion by the oxygen company. It’s not that it can’t per se, it’s just that sometimes some of us can be shallow breathers in the night, so it’s questionable if the machine is sensitive enough to pick up every inhalation consistently to deliver it as efficiently & reliably as when someone is active & awake).
I’ll update again when this saga is all sorted out. This is going to be interesting either way…but hopefully one of these suppliers will work out & I will be able to work with them more efficiently & pleasantly than with my soon-to-be-past supplier.
It just stinks that liquid oxygen is no longer an option. Liquid oxygen can produce much higher flows both pulse & continuous in a lighter weight fashion than these other POCs or even tanks, but Medicare and Medicaid stopped reimbursing for them as have most insurances. Those who have liquid usually started as liquid & arrangements are made for them to stay that way out of loyalty & medical necessity (especially in older patients with mobility issues).
It’s not even given or offered as an option from any doctors offices or oxygen companies anymore because most companies won’t support it & most doctors & their offices don’t want to have to fight over it so they won’t prescribe it. It’s problematic though because this could have been solved for me from the start in April with a Helios-type of model that I could still tote around on my back & would still have been fine with.
Yet, I’ll figure out eventually how to hack this all like I did when I started.