Think I'm getting a handle on this. Or am I?

[SarcasticDave94]

Yep, again typical. Unfortunate for you.

Just my opinion, it's time to really take a long and hard assessment. Mainly the focus is on variants of the question "Do you feel your therapy is doing you good?" and "How do you feel after, and because of, therapy?" It's probably going to sound like a trick question, but if you say yes it's working, then we'll have to assist in getting it better. If the answer is no, then the assistance is frankly to help you fail ST.

The failure method is likely to include the doctors bad settings, and this providing proof that this isn't the right device and that ASV is right.

Part of the evidence is their own report mentioning ASV. Are they going to backtrack and say they didn't mean it? My book then if they didn't mean part, which parts won't they backup? And it leads to if they didn't mean it, I myself couldn't trust them.

[spudhorse]

Part of the problem is that it's hard to know who's driving the ship. In fact, I believe it's a cook and the third officer. There is no captain although I do know the name of the "sleep doctor" who's marginally responsible. I think that's going to be my next stop because everyone else is at the bottom of the food chain who are more interested in keeping their jobs than providing excellent care.

[SarcasticDave94]

No offense intended, but you need to become the captain. It's your therapy, comfort, and health needing improved, not theirs. Become demanding that assuming true, you've had enough of inadequate therapy. Draw a line, this X is how much bad therapy you'll accept, and don't cross it. If it comes down to it, fire them and replace with another team that does know something about Central Apnea treatment.

Whoever wrote the report needs to be made accountable and stand by their recommendation. It says ASV was considered because 50% or more events were CA. That would have been the first half of the split study, without mask. That is evidence of necessity for ASV. Keep your report handy.

[spudhorse]

None taken although I had to go around my cardiologist to get heart surgery (Cardiac ablation for AFib) in another state in September. I think I understand the concept.

This stupid air pump that's shrouded in medical mystery by people who need to keep their jobs and a DME provider who wants to milk every last penny out of me and Medicare was something I thought could be handled "routinely." My endgame may be to buy my way out of the "rent to own" on the machine and buy the one I want (with the prescription I have provided an online store) if I can't get this insanity resolved.

[spudhorse]

The saga continues:
1) I ask the Physician's Assistant "who is the person who specified the ST machine." He gives me the name of a sleep doctor and phone number who read and signed the sleep study.
2) Doctor's office says "No, it isn't him -- it was the Physician's Assistant and, no, you can't talk to the sleep doctor without a referral." (My head spins off).
3) Physician's Assistant says "Oh . . . you want to know WHO is the person who specified the ST machine? That was me.
4) I ask again why I have this machine and not one of the others.
5) Physician's Assistant says "I went with ST due to sleep study recommendations.  I turned the back up rate off just now and we can try that to see how you do. Let me know in a week how you are feeling. If we need to switch to different machine after that we can. " 

Spent a good part of this morning trying to get someone to do a second opinion. You'd think that would be easy but there's a barrier everywhere including licensing requirements. Really nuts!

Perseverance in the shadow of ineptitude!

[SarcasticDave94]

Good job. You're doing something about it. If I were asked, and as best as it is applicable, there's the line drawn. Next week.

If by next week you're not satisfied, mention what the manufacturer recommended treatment for CA is, ASV. They reported ASV to be considered, make them consider it.

ResMed on ASV

Who is ASV therapy suitable for?
ASV therapy is safe and efficacious for certain patient groups with central breathing disorders that can sometimes be challenging to treat, such as:
• Central sleep apnea (CSA)
• Complex sleep apnea (CompSA)
• Mixed sleep apnea
• Periodic breathing


The one area that may cause them hesitation for ASV would be the heart. I don't have AFib but PVCs, and my echocardiogram for the ASV showed a LVEF of 55%, 45 and below was the cutoff. It's due to a flawed test SERV-HF that's overdue for replacing.

For some, ST can be fine even to treat mixed or complex apnea, the better choice is still ASV for most. About the only thing that makes the ResMed ASV less useful is that timing is Auto only, or I could still be on it now.