1 month follow up with asv. What the?

[Nooblakahn]

So today is my one month follow up with my sleep center. I've been on my machine a little over one month. I've only had one day where I missed compliance, which I only missed by about one hour. Im sure all will go smooth here.

My rt did tell me I couldn't look at my data... because, "they have the software" so im unsure as to whether I should play dumb and act like I haven't looked at the data... or if I should ask her to fix the time on my machine because I can see that the times are off in sleepyhead.

How would I adjust the time and turn on sleep quality so I can see my on screen data? I've stayed out of the clinicians menu so far, just during the compliance period. Since that is today all bets are off. I don't feel the need to change pressure settings since im usually below 1 Ahi. Only had a few nights that were over.

[pandatx]

My times are off on Sleepyhead too

[SleepWellCPAP]

Hello Nooblakahn,

It is really sad to hear when clinicians tell patients who are interested, not to look at the data from their machines. Having the patient engaged with the therapy makes it a whole lot easier to make corrections and adjustments if necessary.

As far as the sleephead software, I'm thinking that's going to be a Pugsy question. I don't have experience with that product as yet.

Great job staying with the equipement! Sounds like things are going well.

Jim

[NotLazyJustTired]

I see no reason to hold back. It's your treatment; your data! I am keeping a notebook of charts and data I plan to discuss on my follow up.

My clock was off by three hours. It is easy to fix in the clinician's menu. However, if you would like to use that as a stepping off point to demonstrate that you are aware of the data, at this point that probably makes sense. Fear not the clinician's menu!

[Nooblakahn]

Oh. I should mention. The times are off in resscan as well im sure. Ill have to check that. Never occurred to me that it could be a sleepyhead issue.

Agreed. It was a crap move on their part to not turn on sleep quality and tell me not to look at data. They did alot right at this place though.. so I think ill let that slide, since I can and have viewed my data anyways. Maybe they wanted the reverse psychology effect? Telling me I couldn't do it just to ensure I would?
Yeah. Its been pretty easy to stick with the machine. The few times I slept a few hours without it I have felt like junk. That's powerful incentive right there.

[Nooblakahn]

I found a thread where pursuant listed a link on how to set the clock. I've saved that and will fox it with those directions.

[Pugsy]

Fix the clock setting...turn Sleep Quality to On...and do what you want to do about the software.
SleepyHead should show the correct time if you have the proper time zone selected.
ResScan should too.

[Nooblakahn]

Yeah. Im thinking time is off on the machine itself. I didn't think to verify in resscan... I think its off too though.

Thanks for everyone from here for the support and knowledge. It's helpful.

[Nooblakahn]

So I had my follow up and actually met with my sleep doctor. I feel that was kinda a waste of time and money. Not the therapy... just this meeting. He didn't tell me anything I didn't already know... thanks to this forum . He did mention I may not need asv after this machine... he said we have basically an oxygen thermostat. And when we start getting correct oxygen while sleeping our brain doesn't want anymore because it basically thinks we've got enough. The hell? If this is true.. why does everything state we don't know why pressure causes centrals?

The billing portion said they are going to bill my insurance for my machine on 4/25 as it is a two month rental, but they don't need to see my machine next time because my insurance only requires 50% compliance... hmmm interesting today.

[khauser]

So I had my follow up and actually met with my sleep doctor. I feel that was kinda a waste of time and money. Not the therapy... just this meeting. He didn't tell me anything I didn't already know... thanks to this forum . He did mention I may not need asv after this machine... he said we have basically an oxygen thermostat. And when we start getting correct oxygen while sleeping our brain doesn't want anymore because it basically thinks we've got enough. The hell? If this is true.. why does everything state we don't know why pressure causes centrals?

The billing portion said they are going to bill my insurance for my machine on 4/25 as it is a two month rental, but they don't need to see my machine next time because my insurance only requires 50% compliance... hmmm interesting today.

That's simplistic. Even with my very limited knowledge I know it's really a CO2 thermostat, NOT an O2 thermostat. This is the reason CO poisoning is so insidious ... are bodies don't react to lack of O2 as much as over-abundance of CO2. Too much CO2 means we need to breathe more (O2 is low), and too little means breathe less (there's an abundance of O2).

All of that is the idea of it ... how CA's play in to it I am not certain. I got the idea that he was saying that usage of ASV long term may not always be needed because the initial usage might "reset" that thermostat. I have never heard such a thing before...

[Pugsy]

I have read that sometimes the over abundant centrals do go away for some people after a period of time when it is the pressure that is triggering the breathing response. From what I have read several months to retrain things though and people don't have the patience for it a lot of the time. You know how we are...we want things fixed right NOW.
It's hard to be patient when we feel like crap and still are getting horrible sleep quality by trading obstructive apneas for centrals.

[jtmarten]

I'd def tell them you monitor your data. If they're a good, responsible DME, they may be glad; if they're shady, they may drop you.

[Nooblakahn]

Since I have the machine thats helping. Id rather wait till it is paid for and owned by me before they do drop me. Next time I go back... since the machine will be owned by me then.

[JohnBFisher]

Wow! Lots of stuff to follow up on in this one ...

First, do tell them that you read the data and monitor your own therapy. Reassure them you are not monkeying with the data. If they complain, then ask them this:

Do you let diabetics see their blood glucose numbers?

They might answer "I don't know"... But press the point. It's an EXACT parallel. If a diabetic does not monitor their blood glucose levels it can and does lead to death. Too high ... and you die. Too low ... and you die. Well, guess what boys and girls .. Poor sleep can and does lead to death. Stroke, heart attacks, falling asleep at the wheel. Poor performance at work ... You name it and it impacts your life.

You have the right to see the data and track your therapy. I generally don't recommend changing pressures without discussing it with your doctor (and that's especially true when dealing with central sleep apnea).

However, remember that Sleep Apnea is equivalent to diabetes in how it impacts our bodies. You have every right - as does the diabetic - to know and monitor your therapy.

Second, khauser has this one spot on. Our bodies respond to the acidity of our blood. CO2 increases the acidity. As the acidity increases, central chemoreceptors trigger the respiratory drive:

http://en.wikipedia.org/wiki/Hypoxic_drive

It's my understanding that we don't in fact have chemoreceptors that track oxygen levels.

Third, I doubt seriously that you will find a decrease in the number of centrals if you are not on an ASV unit. I hate to be the party pooper, but reality is that if you have central sleep apnea there is some problem either with your brain stem or those chemoreceptors. And if that's the case, applying pressure (to get the airway open) won't magically cure it. Those who saw their centrals go away almost certainly did not have long term central sleep apnea. Rather it was a symptom that surfaced and could be addressed with xPAP therapy. I don't have anything to prove that, but it seems likely based on the experiences of folks on this forum. Sure, with your current ASV you end up with a low AHI ... but that's the unit doing its job.

So, I agree ... wait until the unit is paid for and THEN see about any changes.

Hope that helps.