Today was a big day for me.  I changed oxygen suppliers again & got calibrated & fitted for my new oxygen system.  It’s called a Niov.  It’s basically a portable ventilation system.

I know that sounds intimidating, but it’s not.

It’s not the prettiest looking thing but it works so efficiently that I don’t mind it.

It’s a mix of old & new thinking which I like.

I’ll probably talk more about it in a few days after I’ve tested it more thoroughly & have more spare tanks, but the test run & set up today went well.

I used it sitting, walking, climbing stairs, doing some exercise, going out to lunch.  I took a big e-tank which I mentioned in earlier posts (it’s the largest size tank that most oxygen suppliers provide.)

Normally I’d kill a half a tank to exercise 30 minutes.

I still have a quarter of a tank left after using it fairly continuously from 11am to around 4pm this afternoon.  Some of that was a good couple of hours just sitting, talking, & getting used to wearing the device, but not all of it.

The cannula was uncomfortable at first. I had to break it in a little to avoid it sliding off me, but what a difference I felt in my breathing.  Even just walking around sometimes I’d feel winded with continuous oxygen & now I feel like I get just what I need.

It delivered what I needed & when.  It was efficient, & if I was breathing too fast from what I calibrated the machine or made several changes in position in a short time, I just put it into the moderate or exercise mode for a little while & I rebounded right away so I didn’t have to readjust any settings.

The best part is I still have room to grow with both the initial settings & then the breathing rates so as my oxygen needs go up I can adjust it accordingly.

The device itself is a little box. It can attach to a belt, but since I wasn’t wearing one I just carried it around.  It wasn’t that heavy, though it did have weight.

[ I think actually though my running belt might work to hook it on to, maybe even a slightly larger one might even hold it.  Then I don’t have to look fanny pack dorky (but hey, whatever works). ]

Because since it’s so much more efficient it means I can go back to lighter & smaller tanks for going out & driving if I don’t feel like using the E tanks all the time.  Changing tanks on it when I need to is no more fussy or complicated than normal. I’m just not having to do it as often as I would without the system.

I found a rolling backpack online that will be the right dimensions to carry two tanks of the next size down with me at a time.

If not I’m not exercising or doing something strenuous I can probably get about 3 hours out of those smaller tanks possibly.  [Which I don’t mind changing those more often because they are lighter & less bulky.]

This means instead of stockpiling a ton of tanks, I don’t need as many & they easily last twice or triple the time of what they would without this device.  I’ll still need some but probably only half of what I’d need normally.

My transplant social worker was a huge help in moving this along for me once I explained what I needed to help obtain this device.

My new supplier was upfront in getting things going & asking for what they needed in the way of documentation & the respiratory tech they sent for me today was professional, thorough, & efficient.

Even though I’m sitting on my home machine as I type this I feel less exhausted today than I might otherwise. Today was a good gauge of a less active or weekend type day.

So I can go full speed tomorrow & then see what happens to get some good gauges of how this system will work for me on a daily basis.

I feel fortunate to have such full support & good delivery of oxygen with this device.  I’m not wasting air & I’m not playing catch up with my breathing.

I feel tired (but worked) & not exhausted.  I’m excited to see how I feel exercising with it tomorrow out at the community center so I can test drive it on a few different things.

Best of all, my supplier is working out a schedule for me here but also can bring me equipment in Philadelphia if I need.  So in the event I get a transplant call (dry run or otherwise) if I need them to they can bring me what I need.

I know there might be some slight wrinkles or a learning curve with this as I get started but it’s a relief to know I have this to carry me through until transplant & that I have not already maxed it out & am just biding time trying to get by & make it work.

Nor will I have to load my car or home with a huge stockpile of tanks just to be sure I have enough for a week or two or to go some place for a day.

The sad thing is I’ve been told by several suppliers that Medicare & Medicaid won’t reimburse for this, which is a shame.   But hopefully that will change in the future.  Luckily, insurances do seem to cover it, especially if it’s explained that there is no other choice to keep people active or support them for exercise especially if they have exercise requirements for listing for transplant.

I’m glad I found out about this device or I’d still be really frustrated with my situation.