I admit this week was frustrating with the weather but today was frustrating for another reason. Yesterday I noticed that I was going a bit low again with my oxygen levels while I exercised. I am maxed out on my portable concentrator – it won’t go higher. So, I decided to run a test today with a tank & see what I need…the result is depressing a bit, I will admit. I did however, report these changes to my doctor because I know they will affect my score.
I took an e-tank which looks like this:
It’s actually one of the larger size tanks in use. It’s what I switch my concentrator out for when I visit my center for check-ups & breathing tests.
I had to put this size tank up to 4 Liters of continuous oxygen using my oxymizer nasal tube so I could stay at safe levels while I was exercising because 3 Liters was barely enough.
So essentially now I have doubled what I had used over last week.
Without my oxymizer nasal tube this would have to run at 8 Liters of continous oxygen while I exercised to be enough support for me to exercise for the 30 minutes that I usually do. It’s because of that special nasal tubing I can get by with half the demand, which still poses a problem.
The problem with needing 4 liters even with an oxymizer is that there are no portable concentrators that go up that high. They all top out at 3 Liters continuous. As it was even on 4 Liters I blew through almost a half tank in 30 minutes.
I can’t exercise with pulse dose (or intermittent) oxygen only because my levels bounce around too much. I need a continual flow of oxygen so the other settings & mode on my portable are useless when it comes to exercising — my body just uses too much. You also can’t use those special nasal tubes on intermittent mode (pulse dose) oxygen.
Luckily, my portable still works for walking around & just sitting around even though I’m using close to 5 Liters on the 6 liters of pulse settings, but it poses a real dilemma for me.
Most suppliers whether you have private insurance or Medicare or Medicaid will give you a limit on the supply of E tanks they give you for back up if you have a portable machine, whether it’s working for you all the time or only part of the time.
I have no idea how many E tanks I would need in a week if I moved to just using them either.
My limit with the portable is only 2-3 back up e-tanks (but I found a way to get a spare for those spares just in case one malfunctions or goes bad).
So, I’m looking at other options.
Another company I was made aware of while I was in rehab for my car accident may be working with my doctor to see if this device would work for me.
I still would end up probably having to move to e tanks but I think I’d get more life out of them.
It’s nice too because it has 3 different modes it can adjust to one for rest, one for moderate activity (like just walking around) & one for exercise.
I think most suppliers don’t stock it because it’s not covered by Medicaid or Medicare.
But this other company is going to check with my insurance company to see if something like this would be covered while I ask my transplant doctor about it.
I’ll end up having to do something regardless if I change suppliers or not because my small home concentrator only goes up to 5 liters and I’m right at 4, so I unfortunately need to “upgrade” that as well.
I need one of my doctors to get me a copy of my updated prescription so I can get a 10 liter concentrator so I have more cushion on my home machine than just a liter.
It’s hard because for those of us who are younger, our options for keeping us mobile at this level are extremely limited. I exercise 4 days a week to combat my decline.
I have to do at least 3 days a week to stay listed.
I don’t want to have to carry around at least 4-5 heavy e tanks to make treks to Philly or have to have 1-2 spares all the time just for short runs, but unfortunately that might be what it might come to.
I’m just hoping that my doctor & this other supplier can come up with something workable for me that won’t require me to stockpile a bunch of e tanks to help me stay active.