Self-titration studies

I was at my DME today and got a scolding for changing my pressure settings. This came as a bit of a surprise to me as I had told my RT that I was making small tweeks on the last two visit and she seemed to put up with it. This time she said her boss had talked to her and that it was absolutely forbidin. In fact she claimed it was illegal

Anyway I wanted to show her some of the self-titration studies that have been done as she said she had never heard of that. Does anyone have the links to them. I know that here was at least two done.

One study is: http://ajrccm.atsjournals.org/cgi/conte ... /167/5/716

The link you posted, James, is the best one I know of. You can thank Mikesus (who used to post on this board a long time ago) for it.

And you can find a whole lot of further studies that quoted this study if you click on the like at the right side:

http://scholar.google.com/scholar?q=lin ... %2F5%2F716

Looking at the 'quoted by' of any paper leads to further developments in the subject.
O.

good one for our side James! (insert Theme from Star Wars here)

James -

Why didn't you just show them the EPA software you developed. It appears they need to be educated before they turn you over to the authorities.

James, sometimes we ARE surrounded by a bunch of idiots.
You are probably a nicer and more diplomatic person than I am.
I would like to compare your knowledge base with both the DME and his/her boss.
Illegal? Show me the law!
Danger?
show me the facts!
this is another excellent study on self titration:
http://www.sleep-solutions.com/clinical ... n_CPAP.pdf

It is truly sad that so many uninformed and vulnerable patients are relying on some of those who really know NOTHING about the praactical issues we all face.
How many docs and DME rely TOTALLY on the info provided by the sales reps?
Their minds are made up. Do not confuse them with facts.
James, I hope you took this opportunity to help educate these people, but I doubt they are willing to even listen since THEy are the experts.

Our mission is still far from complete. It has barely begun.
One patient at a time and there is a lot of work to do.

Just curious, James, how did you reply to this?

If you can find a cooperative doctor, one who approves of your tweaking your settings, talk to him/her. Then just tell the DME/tech that you are doing this with your doctor's blessing. This might even shame them into learning something that they need to know.

I spent a whole lot of time with my doc, showing him the software and explaining it to him. Then I spent at least 45 minutes with a student doctor in training in his office (he asked me to educate her). Both found it fascinating and useful. I think the trick is to find a flexible doctor, often one who is relatively young (though not always), since they are still in a learning mode and want to be up on the latest and are more data/computer savvy. My GP doc is geeky and likes computer stuff, internet stuff, etc.

DreamStalker wrote:James -

Why didn't you just show them the EPA software you developed. It appears they need to be educated before they turn you over to the authorities.

DreamStalker,

Great question!
She would of fallen down or been sitting down and fainted if she would have seen Jame's great invention of Encore Pro Analyzer...

But, we do have to remember that James lives in Canada where the cpap rules are all togother different and restricted compared to ours here in the U.S.!!!

SleepyNoMore

DreamStalker wrote:Why didn't you just show them the EPA software you developed. It appears they need to be educated before they turn you over to the authorities.

I actually talked to the RT about my software on my very first visit with her. The RT really seemed to be impressed with my OSA knowledge on my first two visits. She said I was the most well informed patient she had ever had. She even took me around the office telling other about my software, etc.

However on my third trip in she was completely different. She said her boss had talked to her about me and that I must set my pressures back to the prescribed ones immediately. She seemed very grumpy and gave me a bit of a lecture. I thought it was kinda funny since I am probably old enough to be her father...

tomjax wrote:Just curious, James, how did you reply to this?

I told her that I didn't believe it was illegal. I'm actually a bit worried about it all. Its taken me months (2 years actually) to get a sleep doctor that as decent and to find out I had central even though I was struggling terriably. This RT said she would be contacting my Doctor immediately about all this and I'm hoping it doesn't turn the Doctor against me.

RosemaryB wrote:If you can find a cooperative doctor, one who approves of your tweaking your settings, talk to him/her. Then just tell the DME/tech that you are doing this with your doctor's blessing. This might even shame them into learning something that they need to know.

My ENT has been very supportive in this respect. He even sent me to the local DME to show them my software but they where totally uninterested and didn't even want to see a demo.

My sleep doctor here in NS was great and she seemed interested, always asking to see my charts. However she moved to the US and now the director of the sleep lab has taken over my case and I'm not sure what she is like yet.

Along the lines of what I just said in another, nearby post, if we're "guilty" (breaking the laws) of monitoring and adjusting our own therapy, the people in Canada with diabetes (Type 1's and Type 2's who inject insulin and adjust their own medications) must all be in prison.

As tomjax said......

Illegal? Show me the law!
Danger?
show me the facts!


Den

rested gal wrote:The link you posted, James, is the best one I know of.

I actually met the main author of this study, Dr. Michael F. Fitzpatrick. He is the doctor that I went to see back in May of 2008 in Kingston, Ontario. He was initially very interested in my case but wanted to start from scratch with a sleep study. I was so anxious at that time to get help that I was unable to fall asleep in the lab (pretty common for me) As a result he lost interest in my case.