#cystic

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For two years, I have been severely limited by oxygen which I sometimes ‘purposely’ forget, so I can have some humanly mobility.

It amazes me that the worse your lungs digress, the heavier those tanks and machines become.

First I was prescribed a heavy tank on wheels, that I used until they brought over a block-like concentrator and a equally heavy condenser. Those two machines were my furnace during the whole day and was very noisy!

With these two machines, came two tanks that gave me 8 hours of O2 on 2lpm or 4 hours of O2 on 4lpm. This meant: no outdoor overnight camping, no long trips and no staying away from the house for over 7 hours...it wasn’t life! It was a restraint.

I begged them for another tank, and reluctantly they gave me one extra for a total of 12 hours. Those tanks held me over for short trips, but when my lungs slipped a little further down, my obligated 2 liters went up to 6 liters and I refused to use that much, so I leveled at 4 liters and 6 hours of oxygen.

I brought my case to my pulmonologist and she agreed that I needed a battery operated concentrator and I was given the Simply Go which was a 12 pound brick. And carrying the extra battery, cords and packaging...it was well over 20 pounds of weight on my back as I could not work or even do daily tasks without just leaving it somewhere on the deck as I jump roped with the hose...tangling up, knocking things over and being on a short 6ft leash.

The hours weren’t any better either! With two batteries at 4lpm, it only tasked me 4 hours. I could squeeze 8 hours out of 2 liters, but once more I was limited by the weight, size and time.

So when my family surprised me with the purchase (over 3500$) for the Inogen 5; I was skeptical.

When it arrived, it was only a small device, about the size of a cereal box, and weighing just under 5 pounds. It was remarkably light and it came with two extra batteries. A carry case and backpack.

I plugged in one of the large batteries and tested it out. One battery at 3lpm seemed to last me 11 hours. Two batteries, 22 hours...I still have yet used the smaller 5.5 hour battery that I call ‘The brick’ as they are about the size and weight of a brick.

I tested to see if I could use it around the house and found daily tasks like laundry, dishes, vacuuming and walking outside was tolerable. Only issue, I have no shoulders due to muscle wasting from CF, so it is a struggle with the strap and my bra straps...lol!

One feature it has is a loud warning alarm which first sounds at 3% battery (only once, which is a downside as I sometimes miss that first alarm) and a final steady beep at 1% for about 1 minute until the machine turns off. Another ‘neat’ feature is the breath detect light that would flash green each time I breathed.

One of the most beneficial features that is amazing is the battery hour counter. You can read the time you have left and that takes away the guessing game or playing ‘beat the clock’! I use it to see when I need to go fetch the other battery if I am going out on a walk or just lingering around.

I few downsides to the Inogen 5 model is that it only has one mode, pulse. The smaller Inogen 5 model has steady pulse in its functions, but the battery life isn’t any good. And considering I use pulse while awake, it works to it’s beneficial. It goes from 1-4lpm...so it covers my oxygen needs (however, 4lpm greatly reduces the battery life).

New lung cell type discovered. Thoughts health innovators?

Cystic fibrosis is a genetic-based disorder which primarily affects the lungs.  The gene affected by cystic fibrosis is CFTR (cystic fibrosis transmembrane conductance regulator), which controls the movement of salt and water in and out of cells. People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, affecting the entire body. …

Now the real question...could it be possible? 🧜‍♀️

It seems a fun fantasy that would make a riveting novel! Even when I was young, I too thought I was born on the wrong side of the ocean as I seem to be drowning on air and breathing my own bodily fluids...and of course having scaly eczema does not help!

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