Now what do I do

[tvmangum]

Ok. I gave my new sleep doc another chance today when I went for my 1 month follow-up. Before going to the appointment I reviewed what everyone said regarding my heart conditions, readings from my machine, etc, to make sure that I didn't make any big mistakes such as saying something incorrect and to remember the order to ask questions.

First, I checked to see who provided the doctors "board certification" in sleep medicine and found that it is the American Board of Sleep Medicine and he completed it in 2005.

Next the doc reviewed the report from my data download. He said that everything looked fine on the report. I asked him about Monday night/Tuesday morning when I had approx 12 apaneas while I slept. I then got the lecture to not pay attention to the data from the machine where it shows the different events. He told me that the only thing that I should pay attention to is statistical part of the report that shows my AHI is 7.4. He went on to say that the machine is not smart enought to correctly measure and report AHIs. If I had been thinking I would have asked, "If the machine is not smart enough then why should we trust the report where it says the AHI is 7.4? That data comes from the machine that you say not to trust?"

I then went into the whole left heart insufficiency discussion and episodic events discussion that we have had before. I was told that the research is constantly changing and that I actually had the left heart insufficiency and OSA relationship backwards. I said that I had read where there was a correlation between left heart insufficiency and worsening OSA and that it could possibly be what is causing the problem getting my pressure "dialed in." Once again he said that I was wrong. He then said that the machine was working as it was designed and that I was, according to his own words, "cured." Anyway, I get to go back in 3 months for another follow-up and I hope by that time to actually have all of the raw data from my sleep/titration studies.

Now what do I do?

[Muse-Inc]

Gosh, not real helpful was he. Can't remember what your cardio doc said about this situation, remind me. Do they follow each other's reports? If it were me, I'd get an APAP and see if improved my numbers. Reducing events and preventing desaturations reduces stress on the heart from apnea. I found this article very educational http://circ.ahajournals.org/cgi/content ... type=HWCIT.

My cardio doc and I discussed it and what I had in Figure 3: http://circ.ahajournals.org/cgi/content ... FIG3189420

This article is good too http://advan.physiology.org/cgi/content/full/32/3/196

Good luck on finding a direction forward.

[roster]

Can you post another detailed chart of a typical night or two?

Too bad about that doc. I know you can't have confidence in a doctor who thinks CPAP "cures" sleep apnea.

[rested gal]

He told me that the only thing that I should pay attention to is statistical part of the report that shows my AHI is 7.4. He went on to say that the machine is not smart enought to correctly measure and report AHIs. If I had been thinking I would have asked, "If the machine is not smart enough then why should we trust the report where it says the AHI is 7.4? That data comes from the machine that you say not to trust?"

I love that!! Even as an afterthought, I love it!!

Refresh me, tvmangum...what pressure were you prescribed? And do you have EPR turned on? If so, what level of EPR and is it set for full time EPR?

If your AHI of 7.4 is mostly from the HI (hypopnea index) and if the AI (apnea index) is very, very low, then I'd say an AHI of 7.4 with a ResMed machine is fine. That's just my opinion about the hypopnea reporting from a ResMed machine. Doesn't mean there's anything wrong with the way ResMed reports hypopneas... it's a matter of "definitions."

Chart posted by Velbor showing the differing definitions used by the different manufacturers:
April 2, 2009
viewtopic.php?p=356255#p356255

POLL: Typical AHI for ResMed Users - topic started by twokatmew
Aug 29, 2009
viewtopic.php?p=399610#p399610

AHI question... - topic started by LaurieJ31981
Aug. 1, 2009
viewtopic.php?p=390817#p390817

High HI affecting AHI rating. Should I be worried - topic started by ChrisC
Mar. 30, 2009
viewtopic.php?p=355205

Alternative ways to decrease the AHI - topic started by christo
Dec. 21, 2008
viewtopic.php?p=324087#p324087

Good links, Muse!

I'm not so sure an APAP would be a good idea when there is an existing cardiac problem. I wouldn't want to switch from CPAP to APAP without checking that out with a very knowledgable sleep doctor.

[-SWS]

I was told that the research is constantly changing and that I actually had the left heart insufficiency and OSA relationship backwards.

Not to confuse an obstructive problem (OSA) with an episodic central breathing problem (CSR/PB, CSA, mixed). Your doctor has the correlation correct: unaddressed OSA can cause heart problems. That correlation is well known.

But when it comes to central problems, the reverse correlation is extremely well known as well: heart problems can cause episodic or consistent central breathing problems. Since the spikes did not occur during your sleep study, and since neither doctor nor APAP machine can differentiate central apneas/hypopneas at home, then significant home-measured AHI spikes might be central and thus heart-related. They should not be completely ignored by heart patients IMHO. But a reminder that I'm not a health professional of any kind.

I was told that the research is constantly changing...

Indeed it is... which leaves plenty of theoretical room to suspect that left-heart insufficiency can cause episodic obstructive AHI spikes as well:
http://healthlibrary.epnet.com/GetConte ... iid=171839
http://ajrccm.atsjournals.org/cgi/conte ... /179/3/241

...That is at least when/if less-common upper thoracic/neck fluid loading occurs as a matter of erratic left-heart insufficiency. The above ongoing work tends to support the possibility of increased pharyngeal collapsibility (i.e. obstructive SDB) when edema related to left-heart insufficiency occurs.

In summary: If left-heart insufficiency causes intermittent pulmonary edema, then intermittent central SDB can occur; if left-heart insufficiency leads to intermittent tissue edema in the upper thoracic/neck area, then obstructive SDB can, at least in theory, be intermittently exacerbated.

If your AHI of 7.4 is mostly from the HI (hypopnea index) and if the AI (apnea index) is very, very low, then I'd say an AHI of 7.4 with a ResMed machine is fine.

That's my opinion as well. But if I were a heart patient, I'd keep an eye out for AHI spikes in the teens, twenties, and higher...

Now what do I do?

I wouldn't argue with the sleep doctor. Rather I'd watch my sleep data to make sure AHI stays within reason. If AHI spikes get out of hand, then I'd visit the cardiologist instead of the sleep doctor with that data trend.

I'd also work on learning relaxation techniques... which are inherently therapeutic IMHO. Your sleep doctor might suspect anxiety based on sleep data is potentially counterproductive. If so, I'm inclined to agree. Good luck and good relaxation!

[tvmangum]

I will try to answer the questions as best as possible.

Muse-Inc: The cardio at Duke just wants to make sure that I stay on top of things. My heart problems are bicuspid aortic valve, regurgitation, left bundle branch block, insufficiency and early stages of congestive heart failure. Surgery is a possibility within the next 2 years.

Rooster: I'm not really sure what graphs/reports you want to see but I can e-mail/pm them to you.

Rested-Gal: My prescribed pressure is 15cm with a fulltime use of EPR set at 3.0.

If I have not answered a question or if you want more info, just let me know.

[roster]

Rooster: I'm not really sure what graphs/reports you want to see but I can e-mail/pm them to you.

Could you post detailed reports for two typical nights like the ones you posted before (see below)?

I am not experienced with the ResScan software but others are. Is there another pressure graph in addition to the one you posted?

Ok . . . you guys were right. Purchasing the software and card reader was a good step. Now I need help with the reports.



If I'm reading this right, the events portion indicates that I had 7 apneas during the night with them lasting from 10-11 seconds. I also had multiple hypopneas during the night. I'm not sure what to think of the pressure information.



What about this portion of the report?

Do you guys see anything I need to be worried about?

[tvmangum]

Here you go.

[rested gal]

insufficiency and early stages of congestive heart failure.

If it were me, I'd try to get the cardio doctor and the sleep doctor talking to each other -- particularly about whether an Adaptive Servo Ventilator machine might be advisable instead of the usual types of "CPAP" machine. I don't know that that kind of machine is what you need, but I'd want doctors who are very knowledgable about ASV machines and your cardiac condition to think about it and say, "yes, let's go to an ASV", or "no, ASV is not what you need at this time."

ASV machines (ResMed VPAP SV and Respironics BiPAP Auto SV) were designed specifically for congestive heart failure patients with sleep disordered breathing.

[tvmangum]

I mentioned the ASV to the doctor yesterday and even had the RedMed literature about the machines. He did mention it and that they cost around $8,000 and the insurance company would probably not pay for it without many more studies, jumping through hoops, etc., etc., etc. (It was about this time that he stopped to answer his cell phone. He didn't bother to leave the room to take the call he just stayed in his chair and talked to the hospital about the patient and what they needed to do for the patient. I thought that was highly unprofessional and probably on the verge of violating HIPPA since I could hear both ends of the conversation. )

I go back in 3 months and we'll see what's going on again but he doesn't want to do another sleep study for at least a year. He did ask that I try to get the raw data from all of my other sleep studies so he could review them and see if anything was missed in the previous study interpretations that we have.

Depending on the follow-up in March I may be back on the market for a sleep doc. There are just not that many in corner of the world.

[Wulfman]

I mentioned the ASV to the doctor yesterday and even had the RedMed literature about the machines. He did mention it and that they cost around $8,000 and the insurance company would probably not pay for it without many more studies, jumping through hoops, etc., etc., etc. (It was about this time that he stopped to answer his cell phone. He didn't bother to leave the room to take the call he just stayed in his chair and talked to the hospital about the patient and what they needed to do for the patient. I thought that was highly unprofessional and probably on the verge of violating HIPPA since I could hear both ends of the conversation. )

I go back in 3 months and we'll see what's going on again but he doesn't want to do another sleep study for at least a year. He did ask that I try to get the raw data from all of my other sleep studies so he could review them and see if anything was missed in the previous study interpretations that we have.

Depending on the follow-up in March I may be back on the market for a sleep doc. There are just not that many in corner of the world.

Somehow, this doesn't pass the "DUH" test. (and a few others)
In the first place, he seems to be putting the cost of the machine over the quality of your health.......

Next, he's off by several thousand dollars on the cost of the machines.

https://www.cpap.com/advanced-find-cpap ... S-BiLEVELS

I'm thinking that either this guy isn't the sharpest knife in the drawer or he's not working on YOUR behalf.

In my opinion........Time to look for another who will.


Den

[-SWS]

I'd want doctors who are very knowledgable about ASV machines and your cardiac condition to think about it and say, "yes, let's go to an ASV", or "no, ASV is not what you need at this time."

In my opinion........Time to look for another

Depending on the follow-up in March I may be back on the market for a sleep doc. There are just not that many in corner of the world.

Perhaps you can work your sleep-doctor search backwards: call DME providers in your area and ask which doctors prescribe Resmed's Adaptive SV and/or Respironics' BiPAP autoSV machines. If you're lucky enough to get a short list of ASV-prescribing doctors, then you can continue to research them as candidate doctors. Admittedly a lot of doctors do not view ASV machines as end-all treatment for heart disease or even SDB that is related to heart disease. There are a variety of viable treatment methods.

Bear in mind that our collective views on this CPAP message board (mine included) tend to be a bit PAP-machine biased...

[rested gal]

He did ask that I try to get the raw data from all of my other sleep studies so he could review them and see if anything was missed in the previous study interpretations that we have.

Well, that's a belated step in the right direction on his part.

I was looking back at some of your previous topics. Apparently your present sleep doctor has never done a diagnostic PSG on you himself.

I agree with what Brenda (bdp522) wrote in one of your other topics:
viewtopic.php?p=410760#p410760

A couple of thing bother me here.

He told me that there was no reason to be going for my third clinical titration when the data from the machine clearly showed that I was using it every night.

The titration is not to show that the machine is being used every night, it is to be sure that the pressure is correct.

He also told me that the at home titrations were of no use because they really do not provide useable information.

They will show(with the software) what your pressure needs were and what events were at what pressures. You will also have the added benefit of seeing more than 1 night of info.

He also told me to ignore the numbers on my machine.

The numbers on the machine will tell you how you are doing. These same numbers can lead to changes to make your treatment more effective.

These 3 comments would have me looking for a new doctor.

Brenda