[Equipment] Central Apnea

[gbbarrie]

[attachment=39038][attachment=39037]

Dormeo pid='430742' dateline='1642438900']Gbarrie, in every conversation with them, reiterate that you are having severe apnea even with the treatment they have recommended for you.  

Sleeprider, what settings would you recommend on the current machine?  If you provide the information, then if Gbarrie feels he must talk with the clinic before making changes, he can tell them precisely what he is going to do.

Gbarrie, I'm still curious to know the answer to these questions:  Do you have some way of knowing that these hypopneas are central in nature (rather than obstructive)? For example, did you have a bunch of central hypopneas flagged in your sleep study? Anything else you can tell us about how your doctor arrived at the diagnosis of central apnea?

I have never seen my sleep study when I mentioned it at my last visit I was told " you don`t need to see it we look after that "  I am going to contact them and make an appointment to see her but having this info will certainly help.

[pholynyk]

In Canada, (Ontario at least) your health records are yours, held in custody by your doctor. You do have a right to a copy of them at a nominal cost. My clinic charged $20 for each of my reports. I didn't ask for the raw data records, mostly because They are too detailed until interpreted.

[Wheel357]

In Canada, (Ontario at least) your health records are yours, held in custody by your doctor. You do have a right to a copy of them at a nominal cost. My clinic charged $20 for each of my reports. I didn't ask for the raw data records, mostly because They are too detailed until interpreted.

I found that a simple call to the actual clinic that did the study emailed me my file at first request, no cost. The doctor doing the interpretation, that is a whole other issue so far. I am in Ontario Canada as well.

[gbbarrie]

gbbarrie pid='430566' dateline='1642349014']     These are new screen shots after a phone meeting with my sleep Dr, she seemed to be thinking that I was doing OK until I asked her if she had personally seen my reports - she then took a few moments to find and open them and then her attitude changed especially after I told her I was not happy with the settings of my machine she made some adjustments and this is the result, I must admit I did not think there would be such a big change overnight.
Thank you for giving me the knowledge to push my sleep Dr into action, I think this is what happens when you only speak to assistants the real message doesn`t get through.

I have attached screen shots as requested hope this is what you wanted and hope this will give me something to discuss with my Dr.
My machine is a loan machine so I am not sure how happy they would be with me messing about with settings but they are approachable
so I might call them and discuss it with them but I think they are most likely to refer me back to my Dr.
Thanks for your input.

[Sleeprider]

That is a significant improvement, reducing AHI from over 30 per hour to less than 5 per hour. It is the result of more than doubling the pressure support from 4.0 cm to 9.0 cm, moving settings from 14/9.0 to 16.0/7.0 (IPAP/EPAP). The machine is now capable of trigging IPAP and breathing for you, whether you need it or not. ASV remains the correct therapy to allow you to breathe spontaneously and to use adaptive pressure support to help you breathe as needed. We have given you the information needed to discuss alternative devices, specifically ASV. ST has shown that with enough pressure support you keep breathing, however the ASV is designed for your problem, and the ST is intended to treat disease and hypoventilation. Keep pushing for ASV.

[gbbarrie]

That is a significant improvement, reducing AHI from over 30 per hour to less than 5 per hour.  It is the result of more than doubling the pressure support from 4.0 cm to 9.0 cm, moving settings from 14/9.0 to 16.0/7.0 (IPAP/EPAP).  The machine is now capable of trigging IPAP and breathing for you, whether you need it or not.  ASV remains the correct therapy to allow you to breathe spontaneously and to use adaptive pressure support to help you breathe as needed.  We have given you the information needed to discuss alternative devices, specifically ASV.  ST has shown that with enough pressure support you keep breathing, however the ASV is designed for your problem, and the ST is intended to treat disease and hypoventilation.  Keep pushing for ASV.

I did ask about ASV but she said it is not covered by OHIP or the Ventilator Equipment Pool and the cost to me would be in excess of $ 5,000 which is out of reach just now, I am impressed by the drop in AHI and hope the accumulative results will make me feel much better soon, actually I am not as tired as I was during the day. 
Thanks again for your assistance.

[Sleeprider]

A used Resmed S9 VPAP Adapt model 36007 with 8698 hrs cam be purchased on DotMed for $550. That is the older model ASV, but has auto EPAP pressure and full ASV functionality. I don't know how difficult importing a used machine to Canada would be, but others have done it. Considering this is the recommended therapy for central and complex apnea, what does that tell you about OHIP that there is no provision for this device? It means people with central apnea will not be treated with the right device.

We will need to see if the new settings on the ST continue to provide the level of efficacy shown in your first try.