I can’t help but be a little frustrated. Last weekend I noticed I was having breathing issues again on my Niov. I had it maxed out & it still wasn’t enough support for me even sitting around anymore. I was still having periodic drops with it set to the highest level.
This time I tried an experiment, I went to just a regular flow of oxygen roughly equivalent to what I use in my bedroom on a tank & I rebounded right away.
The problem with this change is that my tanks used for getting around don’t last near as long on these liter flows. I now need them on a continuous level to match my breathing patterns. It appears any type of conserving type machine or dosing just doesn’t give me what I need anymore which reduces greatly how long my tanks last.
So instead of getting about 5-6 hours out of my large tanks, I maybe get 3-4. I talked to my supplier about it.
They’ll have a respiratory therapist call me & hopefully we can come up with a solution if they won’t rent me two concentrators.
That way the tanks are saved for just being out and about.
I may also have to give them the Niov back since it works fine, but doesn’t meet my needs to keep my levels stable all the time now. It’s a disappointment but I can’t say I’m not surprised.
I just know since I came home from my hospital stay at the transplant center last Thursday & through that weekend I blew through more of my supply than I previously had.
I knew their truck deliveries are delivered Tuesdays. I try to set my deliveries for those days so I can get the maximum supply of tanks available on a consistent basis, but it seems I’m always sweating until the next delivery.
By the weekend, I’m always trying to parcel them out but have enough to at least spend some time with my friends or company. But this is another reason why my social activities are impacted. Some days I don’t have energy to deal with the math.
I know I will figure out a rhythm to this eventually but this math is exhausting.
Just when I figure out what need for a week or so, then my needs & demands change again or I go into a hospital & end up having to stretch a week’s supply into longer so I can never get a consistent reliable number to tell them they need to provide me with in a week, I can only guesstimate based on the prior week.
I also know the heat & humidity are making things somewhat worse as well.
But to be honest, I’d much rather spend my time mapping out fun activities than calculating tank life & counts each week.
I know the problem is too most suppliers are not used to active younger patients so they always find accommodating them to be more of a challenge.
But yesterday I was at the end of my rope. I was told after the time they were supposed to get here that they couldn’t come until Wednesday. They made this change with no notice, even after I called them Monday to say I was low because the Niov wasn’t keeping my levels stable. It was working fine, it just couldn’t keep up with my breathing.
I tried to ride it out with my concentrator at home from my bedroom upstairs, but later that day I had another spike & wound up in my local ER because my levels were going all crazy. (This saga is another story in & of itself for another day)
So their change posed a real problem too because I didn’t have enough oxygen to make a trip to Philly down and back if they were able to change my appointment thanks to this change. They even told the ER doctors they were out. What kind of supplier does this? As my bestie says “This isn’t Poland Spring water delivery”.
I didn’t really believe them once they straightened things out that they would show up today but they did. They did bring another concentrator for the main level of my house. So now my tanks can just be reserved for going out.
If I was at a lower liter flow than I am presently, I might have gotten away with a home fill system. But at my levels it wouldn’t be efficient because I need too much & the home fills take too much time to fill.
For now thanks to added pressure from my local ER docs I was able to get another concentrator added to my regular delivery today which is a start…
I may also change suppliers again but since I just switched a month ago I’m hoping I won’t have to restart that nightmare again.