However, on the CF boards they were talking about distilled water having burkholderia cepacia (aka, b. cepacia) in it. I have pseudonomis, which you can't get rid of and is bad enough, but getting b. cepacia is much worse.
Now I'm getting a little paranoid. I'm breathing this distilled water into my body. It's supposed to be helping me breathe better, but I'm wondering if I'm setting myself up for worse bacteria where I just can't fight it. I wonder if anyone BOILS distilled water. Wouldn't that kill anything in it?
Is this machine more a blessing or an enemy?
Speaking of health issues, last night I developed a sharp pain in my chest and it's still there. I don't know if it's a pulled muscle, something from going out in the cold yesterday, or something more serious. In the CF world you hear of so many scarey stories of embolisms, pleurisy, etc. If it keeps up I will need to see a dr. but the one I trust the most is 2 hrs. away.
I say get your pain checked out. I used to work for an oxygen supplier, nursing home, and hospital. If you have something new come up, and have something serious like CF, don't ignore it. Your concentrator looks a lot more compact than the ones I'm used to. The old ones were even bigger. Hoping you feel better soon. :)
ReplyDeleteI use distilled water in my CPAP machine.. because of my frequent need to nap with the MS, it's way more than 6 to 8 hours a night that I'm breathing this in.. thanks for the info on b cepacia, I had not heard that before.. 1 of my issues with MS is frequent infections, especially lung related.. I think I may begin boiling the distilled water just to be sure! but I definitely cannot stop using the machine.. gasping for air is way worse than time to boil distilled water!
ReplyDeleteOh boy,I didn't know that about distilled water and cepacia...I use that for my nasal rinses.You should definately get your pain checked out if it doesn't get better very soon and yes,you should decorate your O2 concentrator and post pictures...take care!
ReplyDeleteI agree that you should get it checked out - at the very least call the doc and get their opinion.
ReplyDeleteHope you are feeling better soon!
I hope you feel better quickly. I must say that the water and germs talk was way above me, so I cant comment on it, but I hope you get an answer soon.
ReplyDeleteIt seems cepacia is EVERYWHERE nowadays.. how scary!
ReplyDeleteI hope the pain goes away soon and you are feeling better.
I hope you start to feel better soon, but if you can, please go get your chest pain checked out. I'm worried about you, Debbi.
ReplyDeleteMany prayers,
Amanda