Hi Cindy!Cindy Lou Who wrote:Todzo.
A sister-in-law went through 3 labs without being titrated. They sent her home with a bipap. No experience. No support! After a 3 month struggle she gave up, and gave it back to the DME. Swears she would rather die in her sleep than wear the thing.
If people don't have the positive attitude, perseverance, courage, and support And willingness to do what it takes to make this work. They may fail. Sometimes they have all of the above but don't have support. It feels like they are the only one going through this OSA thing. They may give up.
I have to admit that I am one of those that didn't have big issues with being a hosehead for life. Being a rotating factory shift worker had already trained this body to sleep under some trying conditions. Yes, there was the initial trial and error in finding the right headgear. But the second one was the charm...
My father was a great teaching example. In the mid 80's I heard him struggling to breath while sleeping. The 3rd heart attack killed him after 5 days of his lungs filling with fluid because his heart was so damaged.
I keep coming back to this form because I learned sooooo darn much here.... and still do To the point of embarrassing my Neurologist /Sleep Dr Specialist.... because I knew more about my machine than he did. And that convinced him to buy one for himself.
People here are very helpful. And that's felt and appreciated deeply. They've also walked that mile in your shoes and know what it can be like. Where your Dr and RT most likely has never been there and are clueless. That comes across to many people whether they are consciously aware of that... or not.
The key word for me is support... And I get that 100% from people here.
Bless you all!
Cindy
Thinking about why my own titration was initially successful I think it had a lot to do with the fact that I was living in a bunk bed shelter environment:
1. It was pretty public. Not a great deal of difference between bunking with 150 men vs at the hospital - wired up like a Christmas tree with cameras and all the night. About the same "exposure" feeling either way.
2. The CPAP meant that I would bother my bunkmates less. That was a major stress reducer and stress appears to me to be the major factor in how well my CPAP has worked historically.
I think the whole “one night in a lab” thing needs to change to a “several nights in your bed at home” experience regarding sleep testing and titration. We do not sleep in a lab so testing and titration done there is indeed unscientific and of very limited use and effectiveness as the actual use numbers indicate. Testing and titration need to be done in the native environment of the person being tested or titrated – and to take into account the fact we do not sleep the same every night so several days of data and confirmation of pressure setting are needed to work well in my opinion.
I am glad to know you have found some good support here.
Have a great weekend!
Todzo
