So when I was at my ALS doctor in May, she said because of Covid-19, they were unable to do the lung capacity test. The last time I was there I scored a 91% on the lung test, but that was five months ago. I learned then that the federal health program that applied to this would only approve a breathing assist device when my lung Capacity fell below 70%. So my doctor informed me because of Covid-19, they waived the 70% rule and I could get a breathing assist device. I foolishly turned her down as I didn't feel like I needed it. But after getting back to Wisconsin a couple of weeks latter, I had a phone call with my Nurse Advocate. This is someone who works with me and guides me through the ALS journey. And when I told her about this, she said "isn't it better to have the device and not need it then to not have the device and need it?" Well, you all know I am driven by logical arguments and that was a tough one to disagree with. So I sent a message to my ALS doctor saying I had reconsidered her offer and would now take the device. I made this request on 6/18/20. I am so glad I took the advocates advice, it took over a month to get the device! Thank God I didn't need it. But now to my header.
The guy should up yesterday with the device. I don't think I have to pay anything for this, it is all covered by my insurance. But did they load me up with devices! Four different units!
First, here is the device I will need when I stop getting enough oxygen when I sleep. Pretty basic device, anyone of you familiar with CPAP devices will recognize this. It works a little differently than CPAP though. This device actually mimics the breathing process and pushes and pulls air in along with your own breathing.
This device is to humidify the first device in the winter.
This third device is to pull secretions out of my throat when I am not longer able to clear them. No problem with that now, in fact, I am not having a secretions at all at this time.
This device is the super secretion removal device. It is for when the first one doesn't work. It has a wand you stick down your throat but without gagging. Real interested if I will ever use this.
So in summary, those three extra devices were a surprise to me and I suspect it is the company taking advantage of the health insurance company. No idea what all this costs, but it is all medical grade equipment under power so I am thinking it is a lot. But I just keep telling myself, better to have it and not need it then to not have it and need it.
Last and not related to the above post, is a picture of the PC and stand that will speak for me when I can no longer speak. (Which is coming soon I fear) I had to pay for this, over $20,000. It also strikes me as the most useful device I will use. Funny how that works. No insurance for this. Good thing it just cost me little pieces of green paper of which I seem to have plenty of.
See you all later. Russ