Our CPAP Journey

[CPAPJourney]

I have gotten so much help from this forum, I have decided to keep a thread documenting our journey to overcome my husband’s sleep apnea. It has been so helpful to us to be able to read about others’ experiences, and we have already used some advice from here to make or insist on specific choices. I am doing this for my husband because he works very long hours and is so tired all the time, he has no interest in researching stuff on the internet. I, on the other hand, love to research stuff so it just makes sense – he goes to work and I go to work at home.

[CPAPJourney]

Part 1 Background and Pushing Through Denial
We’ve been married four years. I am in my mid-40s and my husband just turned 50. My husband is thin, and doesn’t smoke or drink. He went for his annual physical a couple of months ago and the doctor raved about his great condition. And, he finally got his blood work done – first time in four years.

I had been trying to get him to do a sleep study for at least two years. He snores very loud and I haven’t been able to sleep in the same bed with him since I was 7 months pregnant (over three years ago). He resisted, saying that I snore just as loud and my snoring keeps him awake. He can nap anytime anywhere and falls asleep in two seconds. He blames this on his job, which is very demanding and fairly long hours. But thankfully, he finally got the sleep study scheduled and did the sleep study.

At this point, he was telling me he didn’t feel “foggy” and didn’t think that he had any of the signs of Sleep Apnea. His Epworth Sleepiness Scale was only 7. He agreed to get the sleep study “for love” (because of the snoring) and made me promise I’d get one too, because I snore so loud. I told him that if he has Sleep Apnea, and we get it treated, and my snoring still keeps him awake, that I would get a sleep study. And if he ended up with no Sleep Apnea, I would get a sleep study. I’m supposed to have sinus surgery already for chronic sinusitis and I have a deviated septum, so I am hoping that might help with my snoring. But I have no problem doing a sleep study after that!

[CPAPJourney]

Part II - Sleep Study Results Summary
While we were waiting for his sleep study results, his blood work came back and his lipid panel was off the charts. Triglycerides 580 and HDL only 20. Then his sleep study came back – AHI 37 and RDI 73 – the RDI so high because they added the snoring that was causing EEG arousals. He had 0% REM sleep.

Luckily, he did a split study and they were able to get him sleeping normally with a CPAP machine. The recommended machine was a CPAP like the Respironics M Plus with a C-Flex, which was used in the study. I don’t know if the crazy blood work (which he had redone to confirm) is related to the sleep apnea, but I hope so. He is now on a medication to lower his Triglycerides. Apparently, Triglycerides over 500 are very dangerous because of the damage they can do to your liver and pancreas. My poor hubby! He eats really well, he’s not overweight, he’s never been sick with anything serious – and then all this.

[CPAPJourney]

Part III - Sleep Study Results – Detail
For those of you like numbers, like me, here’s the detail from the study with some comments by me:

Split study, with 115 minutes without CPAP and 259 minutes with CPAP (adjusted from level 5 to level 9).

Sleep Stages (without CPAP, with CPAP, normal)
N1: 4.9%, 4.4%, 5%
N2: 48%, 44.2%, 50%
N3: 47.1%, 12.5%, 20%
REM: 0%, 38.9%, 25%

Looks to me like most of the problem was excessive time in deep sleep stage (N3) and no REM sleep, and the CPAP was able to reduce time in both N2 and N3 stages and increased time in REM stage.

Other Indexes (without CPAP, with CPAP):
Apneas: 31, 0
Hypoapneas: 38, 19
Max Duration (secs): 36, 28.5
Avg Duration (secs): 20, 19
RERAs: 0, 0
AHI: 37, 4.5
RDI (= AHI + RERAs + Snoring): 73.07, 4.52
Sleep Efficiency: 97.8, 97.3
Snoring with EEG Arousal (per hr): 36.3, 0
PLMS arousal (per hr): 1.6, .2
Desat per hr: 16, .2

- Severe sleep apnea
- Severe respiratory related sleep fragmentation
- Loud non-positional snoring
- No EKG abnormalities
- No clinically significant PLMS
- No Bruxism
- No Cheyne Stokes Breathing

Body Position (supine, left)
Minutes: 77%, 23%
OA: 31, 0
Hypoapneas: 27, 2
AHI (#/hr)” 37.4, 0
RDI: 70, 7.6 (90%, 10%)
RERA: 0, 0


All the Apnea and Hypoapnea trouble is sleeping Supine. But what this is missing is how much snoring happens when he is Supine, vs. on his side. The snoring should have been classified as RERAs, but were instead added into the RDI as “Snoring”, and then it doesn’t appear in this group of stats. Looking at the graph, the snoring is just as bad if not worse when he is on his side. So, it seems to me, if he sleeps on his side all the time like he says (which who knows whether or not is true), all of his sleep disturbance is caused by snoring, not apneas and hypoapneas. So if there is a way to cure the snoring plus encourage him to sleep on his side, he’d be fine. Say for example, his snoring is caused by a severely deviated septum that can be repaired. UGH, but can’t seem to catch a DRs attention enough yet to go through this logic (more in later post).

Oximetry:
Avg O2 (awake, nrem, rem, min): 95%, 96%, NA, 88%
Desat Index: 16
Desat Max: 46

Remarkably good Oximetry numbers, given the high RDI?

[JohnBFisher]

... While we were waiting for his sleep study results, his blood work came back and his lipid panel was off the charts. Triglycerides 580 and HDL only 20. Then his sleep study came back – AHI 37 and RDI 73 – the RDI so high because they added the snoring that was causing EEG arousals. He had 0% REM sleep. ...

... He is now on a medication to lower his Triglycerides. Apparently, Triglycerides over 500 are very dangerous because of the damage they can do to your liver and pancreas. My poor hubby! He eats really well, he’s not overweight, he’s never been sick with anything serious – and then all this.

You might want to do some searches on "sleep apnea and triglycerides". For example:

http://www.emaxhealth.com/107/4299.html

Additionally, if your husband has not had an A1c test done (essentially to measure his average blood sugar) he should have it tested. Sleep apnea also does horrible things to the body, including tending to increase the glucose uptake resistance causing higher than normal blood sugar levels. This can lead ot both high triglycerides and low HDL values. I'm not saying your husband is diabetic, just that poor sleep definitely distrubs the normal metabolism. And that can explain the poor lipid panel results.

Treating sleep apnea can help reverse and prevent a host of cardiovascular problems. That's the good news.

[CPAPJourney]

Part 4 - Our First Meeting with Sleep Doctor
We arrive for our appointment with the pulmonologist who ordered the sleep study. We both like him a lot – I had visited him last year for a different problem. Unfortunately, he was gone on a family emergency, and we were seen by one of his partners. We were ready with all our questions. He was surprised, of course, that we understood the sleep study so well and we caught the inconsistency (described above) in how they were defining the RDI in the report.

He spent about five minutes showing us some charts of other sleep studies, but could tell that we already knew most of what he needed to tell us. But somehow, we didn’t feel like we had a chance to ask many questions. His answers seemed somewhat condescending and not encouraging of us asking more questions. This may just have been because he had a bunch of patients dumped on him for the afternoon. I wish they had just rescheduled us with our doctor.

Then we insisted on the Resmed Auto Set II w/EPR. He prefers Respironics because he likes their reporting better. We had a whole list of reasons why we wanted the Resmed Autoset, but he must have wanted us out of his office fast because he said fine, and crossed out the box he already checked – Remsatr Auto w/ A-Flex, and checked the box for the Autoset II. He had both machines sitting on his shelf and didn’t even take the time to show them to us and let us have any input before he recommended the Respironics. Then he assigns us to Apria, and I said that we would prefer a different DME, because I have had trouble with Apria in the past (billing problems for a bili blanket when my daughter was born). And he said fine, again, and assigned us to a “local” DME. He hands us off to the Admin person and she tells us she will fax it over to the DME, and to give them a few days to call. I can’t imagine where we would be if we had gone into that appointment unprepared! Well, we’d have a Remstar Pro with C-Flex and we wouldn’t have a clue about Sleep Apnea.


Now I am caught up, so next update will be after we get the DME appointment successfully scheduled and the machine approved by the insurance company.

[JohnBFisher]

... I can’t imagine where we would be if we had gone into that appointment unprepared! ...

Now I am caught up, so next update will be after we get the DME appointment successfully scheduled and the machine approved by the insurance company.

Good for you! You and your husband did one of the most important things we all should do - actively manage your health care. And "the system" often fights us at every turn. Thanks for sharing your experience. Many people encounter similar problems. You show the way to take control. Here's hoping you have success finding a good DME in your area.

[CPAPJourney]

Thanks John B Fisher - we'll see if we can work through this quickly.

Strike One (or maybe Two, but I'll need 11 innings of worth of strikes to get through this I think).

After the Pulmonologist promised the DME he referred us to carries the Autoset II, and after the DME told me they carry it, now they say they don't. This was after they called our Insurance Company to get approval. I called the insurance company and they said APAPs are covered. Is it possible our Insurance Company only covers a particular brand of APAP, (i.e., not Resmed)? The DME actually called the pulmonologist's office back, instead of me, to tell them they don't carry the machine. Maybe they were thinking the pulmonologist's office would just change the machine to the one they want to sell us?

Then the pulmonologist's office called my husband, he called me, and now we are assigned to Apria after all.

I just hope my husband isn't getting too frustrated already.

I am going to call the Insurance Company tomorrow and tell them what happened try to determine if they denied coverage or if the DME in fact does not carry the machine (but couldn't they order it anyway?).

[Muse-Inc]

Thanks John! The link to the article you posted explains why my lipids went wonky while I was having my lovely 6-month backsliding adventure: with the return of many of my OSA symptoms plus much worse daytime sleepiness atop being laidoff, it's no wonder they were bad! Thanks again.

[Julie]

If I understand it correctly, the billing code for both machines should be the same as far as insurance co. goes, and this business of the DMEs telling you you can't have the machine you want is c..p. You have to be assertive with them, remind them the doctor's script was for the machine you want and they need to come up with it for you. At least that's what everyone else seem to say about this (I don't have those problems luckily).

[CPAPJourney]

... While we were waiting for his sleep study results, his blood work came back and his lipid panel was off the charts. Triglycerides 580 and HDL only 20. Then his sleep study came back – AHI 37 and RDI 73 – the RDI so high because they added the snoring that was causing EEG arousals. He had 0% REM sleep. ...

... He is now on a medication to lower his Triglycerides. Apparently, Triglycerides over 500 are very dangerous because of the damage they can do to your liver and pancreas. My poor hubby! He eats really well, he’s not overweight, he’s never been sick with anything serious – and then all this.

You might want to do some searches on "sleep apnea and triglycerides". For example:

http://www.emaxhealth.com/107/4299.html

Additionally, if your husband has not had an A1c test done (essentially to measure his average blood sugar) he should have it tested. Sleep apnea also does horrible things to the body, including tending to increase the glucose uptake resistance causing higher than normal blood sugar levels. This can lead ot both high triglycerides and low HDL values. I'm not saying your husband is diabetic, just that poor sleep definitely distrubs the normal metabolism. And that can explain the poor lipid panel results.

Treating sleep apnea can help reverse and prevent a host of cardiovascular problems. That's the good news.

Thanks for the link - I had actually found this article, and I showed it to our PCP. It seems that the study results showed relatively small changes - <20%. I mean, relative to HIS levels. A Triglyceride level of 580 is 390% above the maximum recommended level of 150. But, I'm still hoping.....maybe there can be a stronger link sometimes. His HDL is 20, 55% less than the minimum recommended level.

His lab results summary that they sent us says "Blood Sugar - Normal". Would that be the A1c level? Or is there a different test for that.

Thanks

[JohnBFisher]

... A Triglyceride level of 580 is 390% above the maximum recommended level of 150. But, I'm still hoping.....maybe there can be a stronger link sometimes. His HDL is 20, 55% less than the minimum recommended level.

Fortunately, there are some good generic medications that help with the triglyceride levels. Raising the HDL levels often just requires improving the LDL and Triglyceride levels.

His lab results summary that they sent us says "Blood Sugar - Normal". Would that be the A1c level? Or is there a different test for that.

Well, it's not certain. Unfortunately, each lab seems to have different methods to report potential problems with blood glucose control. However, I suspect that was just a measurement of his blood gloucose level. The blood glucose (sugar) test simply reports the level of glucose in his blood at the moment. The A1c test shows the average blood glucose level over the past 90 days. (It is actually weighted more to the past 30 days, but is a more accurate long term estimate than the current blood glucose level).

Edit: A little more background about the A1c test... To quote information from the Mayo Clinic (at http://www.mayoclinic.com/health/a1c-test/MY00142):

Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control. And if you have previously diagnosed diabetes, the higher the A1C level, the higher your risk of diabetes complications.

Still, since your husband's triglyceride levels increased SO much, if it was due to poor blood glucose control, his number during that blood test panel would need to be through the roof. So, the two of you should have one less thing to worry about.

So, here's hoping that between medication and better sleep he will be back in tip-top condition!