I have CCHS. Among other debilitating problems. When YOU go to sleep, your brain/CNS tells your heart to beat and tells you to breathe. Mine does not tell me to breathe.
May 5, 2008 I sat down in a chair and went to sleep. My wife found our Service/Medic Alert dog standing on her hind legs, front paws on my chest, licking my face. She could not wake me. My wife saw that and tried to wake me. 30 minutes later, when she remembered to change my M9 oxygen bottle from 2 LPM PRESSURE DEMAND, over to continuous I woke up. I knew my wife was there. A friend (retired professional lifeguard) told me to squeeze his hand, and I did. I could not remember how to wake up. My oxygen levels were that low. I am now on continuous oxygen and take my ventilator everywhere I go. My beloved little dog, Tolly, has saved me 3 times in the last 20 days.
I am telling you this to reinforce WHY I have to have continuous oxygen and to educate you to a very insidious problem. Many medical people think this may be "SIDS". A genetic test can help identify it in your family. I told our kids about it. A friend has had two babies in her family die from SIDS, they are being tested for the genetic disorder.
I was born with it. It went away and came back when we were in a BAD wreck on a major highway. We figure that also caused the damage to my heart. IF you have a friend or loved one who is falling asleep a lot, or is real hard to wake up...I am NOT saying they have this problem, but it does bear watching. Especially if you shake them and they do not immediately wake up.
One article said there were only 200 confirmed cases of CCHS in the world in 2006. My Pulmonologist said that is because people don't recognize it. CCHS is diagnosed by exclusion. And the DNA test. Ambry does it a lot cheaper than Rush Hospital and Ambry will bill Medicare for you.
I wanted a light weight oxygen concentrator. SeQual Eclipse II is perfect, but I was told the light weight ones break a LOT more than the heavy duty Platinum XL5, etc. Insurance only pays for one unit.
But we found the Platinum XL5 on the internet, brand new, free shipping for under $600. Almost less than a tank of fuel. Ouch.
The moderator can delete this post after a week or so, if they desire to do so. It was only meant to educate and also tell about an answer
if a person needs a continuous flow concentrator. I will buy one and keep it on our boat for now. The one in the house was carried to Denver in our Monaco last summer. I can get our son to load it for me.
If you and I can save one baby from SIDS, this post is worth my time typing it and your time reading it.
For what it is worth, an RT I know in another state told me to get whatever I am being provided by Medicare. He say the filters, etc. are interchangeable and I might be able to save at least fifty to one hundred dollars a year on that alone.
I ordered the Platinum XL5 with oxygen sensor for $562 delivered.
He also told me any person who is already familiar with one unit, might not want to change horses in the middle of the stream. Again, for what it is worth. The Platinum XL5 sells at retail for around $1400. Then
most places on the internet sell it for $700-$800. If you ever need anything off the web, keep looking. It pays off.
I have what may be a somewhat similar disease..In a nutshell, I have pulmonary fibrosis resulting from radiation treatments 25 years ago. Over the years due to lung restriction my oxygen intake was getting worse and worse, and got to the point where my CO2 levels became extremely high..I kept falling asleep, was getting confused, and had extreme headaches. I was admitted to the hospital and that night went into respiratory arrest. Thankfully I was in the right place at the right time and was resuscitated. They found during that hospital stay that for some reason when I sleep my brain seems to forget to tell my lungs to breathe. They believe it is from years and years of my breathing very shallow breaths due to the fibrosis, so they say that my body had actually adjusted to the high CO2 levels but then got to a point where I just crashed. They say this is more common than it sounds. I, unfortunately, never allowed to sleep without my bipap machine (which is at a very high pressure) and I am on 2 liters continuous all night, plus 2 liters on exertion. The bipap is my saviour because the docs say my only other solution is a permanent tracheostomy, so I cannot complain about the uncomfortable mask I must wear. I have been looking for an affordable continuous oxygen system and will check out the platinum XL5. Good luck to you with your health issues..
Mark and Vikki
2008 Gulfstream Amerilite 21MB
2008 Chevrolet Silverado 1500, Ext Cab
1. I am sorry to hear about your Pulmonary Fibrosis. I also breathe
very shallow.
2. I started out with the Respironics BiPap Auto, then ... when things
got a lot worse, I was put on the Respironics BiPap Auto SV and THAT
MACHINE is a Hurricane in a bottle. No other machine I know of can
hit a pressure of 30cmH2O.
Offline
