This is the last time I rag on Dr. Thomas Lowder, my exercise study investigator (who uses an old flip phone), for being “old school” or a “throwback”. The words came back to bite me recently. Luckily, he’s a good sport about it.
The new oxygen company finally received the updated prescription from the doctor & delivered my setup yesterday. What most people don’t realize that is if one changes oxygen suppliers, or maxes out a machine (meaning they need an oxygen level over what it provides); it not only requires a new prescription from the doctor but often a “recertification” or testing by a respiratory therapist to verify the new prescription is correct & adequate to maintain proper oxygen levels. A respiratory therapist meets with the person & walks them again with a basic oxygen tank which is set to a certain liter flow while they take oxygen readings to make sure that levels are staying normal.
If they are really on the ball, it won’t just be in the home or in the supplier’s office hallway, it will be in the home & then out the front door or somewhere where the patient walks & exercises to simulate life & daily use for a proper “titration”. Each supplier & company do it differently.
This is why it’s taking so long for the new supplier to decide what my next set-up will be. This is also what my first supplier failed to do properly. I’m getting “re-certified” on Monday based on my new prescription.
One tiny hallway and six passes is not enough to get an accurate flow rate. This was my last supplier’s “certification”. But at least for a while, I had something workable that met my needs.
The other issue that comes into play with getting oxygen equipment from any supplier is the machines that supplier will offer either to rent or buy. It’s not every machine on the market that is made that’s available or stocked. Even if you know one specifically & where to get it, if it’s not on the approved list — they won’t special order it for you.
Often, It’s often a selection of common ones, & is not solely driven by a patient’s insurance; but also by competitive bidding through Medicare or Medicaid. The reason for this (as it was explained to me) is because quite often insurances often work the same way as Medicare/Medicaid & follow the same rules. Some machines are reimbursable to a greater extent by these entities; others are not as much or not reimbursed or authorized for use at all, even if they are FDA approved. Others, the manufacturer actually puts restrictions on who they sell it to (that supplier has to be an authorized distributor only) ; others may not.
Add into the fact, that concentrators of any form have wait lists. When I first selected my Activox, I had a basic set-up for at least a month & half while it was being ordered & also approved through my insurance. It wasn’t like a cane or a walker that I could leave with the same day.
So in my insurance plan, the only restriction is I will get a portable concentrator (electric) and stationary concentrator (electric) OR oxygen tanks & a stationary concentrator, but not both. So if my portable will work for everything but exercise, I cannot get an extra set of E tanks to use just for exercise & use the portable for everything else. I either have to go with the portable concentrator & try to work with the lower flow, or just move to the “old skool” method of tanks completely.
Typically it wouldn’t be so bad if I could still handle intermittent (pulse dose) oxygen, I would just graduate up to the next machines available. But since what I walk around with or do short runs to and from the store or sit around with is at least a liter or sometimes 2 LESS than what I need for exercise it poses a problem. Not just because I need continuous oxygen now all the time.
My oxygen supplier only has portable concentrators available that run up to 5 Liters continuous maximum, period. I’m already using 4 liters continuous for exercise (possibly more for strenuous tasks or possibly several stairs) & I tend to move up a liter every month or 2, even if I’m doing the same amount or less activity. I’m between 2-3 liters continuous for sleeping, sitting, & a few other less active activities.
So I had researched all of this to death well before changing. I was miffed because when I first started looking I found this really great super energy efficient home stationary concentrator that ran on half the electric of others.
No one around here stocked it, and I couldn’t afford the out of pocket price for it outside my insurance. During this process as I was looking into that I did ask several questions on the next step up in systems from various area suppliers about other patient’s machines they had recommended. Some of those were not available either.
So I pressed for more details. I asked why something that could work couldn’t be special ordered like another piece of equipment (like cast or brace), I asked about what all they stocked, what was covered by insurance & what potentially wasn’t. It’s a real shell game & racket but totally dictated by reimbursements & not necessarily patients needs. But at least my new supplier didn’t try to make empty promises.
It seems the only & best solution might actually be these tanks because the portables they stock only go up to 5 liters continuous maximum (which I’m going to probably blow through very shortly).
The Activox I was using had 4 liters pulse (intermittent) but I maxed that out even for walking & was dipping fairly low with exercise. So I did my best to research a month or so ahead of maxing it out because I saw what was happening & because I knew I would probably have to move to a continuous only machine, at least for exercise.
I called 3-4 different area suppliers within my network (the bulk of which were close & would deliver to me) & each were somewhat perplexed when I had told them how my needs had changed. The supplier I went with seemed to have the most & best options although none of them were machines I’d seen others use on a regular basis that would work.
So now I use a combination of a D tank in a Kelty Basin Hydration pack for short trips, driving & where I need to be hands free. This still makes it backpack able but with me running the oxygen continuous between 2-3 continuous a tank this size lasts around 2-3 hours, maybe 4. I was surprised though, this pack is about as light as the Camelbak, a bit cheaper, & fits these tanks perfectly. (My previous Camelbak was not wide enough at the bottom). So this pack still allows me to close the top with it running so provides some weather protection on rainy days.
However, I’m trying to figure out exactly how many of these I need to keep in a week or what they will rent me because they are lighter but of course deplete faster.
The second option I’m using is an E tank. I typically use this for exercising & for trips to the doctor or other places where I’m going to be primarily sitting around for an extended duration. This is useful for exercise because even though the tanks are bigger & bulkier, the cart is still relatively lightweight & I can set it at the liter flow I need next to the treadmill & go or just walk the track. Most E tank carts themselves weigh in the neighborhood of about 6-7 lbs. plus the weight of the tank. Obviously these will last longer since they are larger tanks. Even at higher rates with exercise probably double or triple the time of the D tanks. But lugging them up & downstairs, in & out of vehicles, & sometimes changing them out can be more work than the smaller tanks. However, I can set a full e-tank at 4 Liters continuous & barely make a dent when I’m exercising. I’ve only approached using up one because I was at the doctors office for 2 hours, had worked out a time or 2 with it on 4. So it was probably close to that 8 hour period but over the course of a few days.
I was initially delivered 5 E tanks and 4 Ds. I have used 2 D’s completely, have about 1 1/2 left. I have about 4 tanks left even after I change out this one that’s almost empty. This is since Wednesday. So hopefully I can after the testing also get the correct amount of each mix sent to me so I have more to spare & then can gauge from there.
The problem with the portables around here that the oxygen companies stock is that they would work for me for just light walking around or sitting & short trips. But would not work for exercise or for other strenuous activity. I need the exercise to keep me strong & so I can do other things. I know it will get figured out, but it’s a little maddening. However, I know I am not the only one who has faced this. It’s pretty common amongst women with LAM. One of the subjects that comes up quite often in our support group.
I am doing the best I can to stay active with what I have. Even if it’s more inconvenient, I am feeling better supported with this setup than the previous one.
Hopefully though, there’s still some solution that can be born out in the testing on Monday.