[Diagnosis] First sleep test AHI 61 Is this really bad?

[dumbusername]

Hi,

Was advised to a sleep test while I was in the hospital having a knee replacement.  They had me on a CPAP in the recovery room because I stopped breathing often enough to freak out the nursing staff.  Waited 3 months to take the sleep study because of pain interfering with sleep.  Went and met with the doctor today and she gave me a copy of the full study.  Actually, my primary care physician is now on maternity leave, so I met with a physician that I did not know.  

This physician acted like the results were no big deal showing me that my AHI was 61 during NREM and then 20 with CPAP. During REM I had an AHI of 63 but only 10 with CPCP.  The doctor then said she would put in an order for a CPAP machine and I will have to wait to hear from my insurance company to see if it will be approved.  If approved the CPAP "people" will come to my house and set the machine up.  I said, "thank you" and the appointment was over.

Then I read the report and was like, "WTH"?  I'm looking at all these numbers and they seem a little scary!  Here is what was stated in 
(BOLD indicates where doctor highlighted report)

RESPIRATORY EVENTS:  Very severe OSA was noted with an AHI of 61 events per hour. The non-supine of 51 events per hour rose to 146 per hour during the 14 minutes of supine sleep.  The SpO2 nadir was 85%. 

COMMENT: Initial sleep latency was short at 1 minute with a high normal sleep efficiency of 95% during the diagnostic segment. Sleep was very severely fragmented with an arousal index of 64 events per hour.  During the titration segment, the patient had a prolonged initial sleep latency at 49 minutes and slightly low sleep efficiency due to pain. Sleep fragmentation was still severe, but the arousal index decreased by more than half to 28 events per hour.

I've spent some time reading the site and have at least a basic understanding of what some of this means.  I'd appreciate any member insights as I have nothing with which to compare these numbers.  I'm reading up on the different CPAP machines and will try my best not to get "stuck with a brick"!  

This post translates into HELP!!!!  

Thanks

[Gideon]

Welcome to the Apnea Board.  We can and will help you thru this.

My untreated Apnea was 90 AHI, it is now around .5.  No guarantee on where you will end up.  That said many of us were diagnosed with Severe Sleep Apnea.

You want one of these 3 machines unless you need a higher level machine,  most here prefer the ResMed as it reacts quicker to events.

Post your sleep  study.  I don't know but it is possible that you may need a higher level machine.  Your sleep study will give us insight on that.  If not then one of these machines.

• ResMed AirSense 10 AutoSet (best choice) (E0601) (Fixed CPAP, Auto CPAP)
  
• ResMed AirSense 10 AutoSet for Her (best choice) (E0601) (Fixed CPAP, Auto CPAP)
  
• Philips Respironics DreamStation Auto CPAP Machine (DSX500x11) 
  

(Not all DreamStation Models, Check SN on bottom, bricks look the same) (Fixed CPAP, Auto CPAP) (best choice)

Fred

[kiwii]

It's okay, you've come to the right place. There are people here that can help you.

As for the scary wording: Don't be scared. There are lots of folks with severe apnea, some with much higher numbers - it is nothing to be scared of. It is nothing to ignore either. Be diligent with your treatment, but there is no reason to be frightened.

[PaulaO2]

I really wish they would come up with a better diagnosis chart. Anything over 30 is considered "severe". So when someone has an AHI twice that (common), they can't help but freak. I know I did!

[Spy Car]

Welcome to the forum.

If there is a silver lining in your numbers it's that there is no *if* about whether you'll be approved for CPAP/APAP 

I'd push for the "ResMed AutoSence 10 for Her" because it gives one the most options for treatment (especially as you found this place with many fine people who can help dial your machine in).  I'd ask the doctor to write this machine into his order.

Be sure not to get a "brick" (aka a machine without total efficacy data--not just compliance data--capability). This is important!

I doubt they will argue with you.

Bill

[Walla Walla]

There was another thread discussing the most API's ever seen.  Your not even close to making that list.

 

[trish6hundred]

Hi dumbusername,
WELCOME! to the forum.!
I know this can be scary, but you have come to the right place for guidance.
I wish you luck as you start your sleep apnea journey.
Hang in there for more responses to your post.

[Sleeprider]

You definitely need treatment, and you definitely need Auto CPAP. What is disturbing is that you were not adequately treated during the titration study. This shows you should receive an Auto CPAP and a machine that provides data so we can try to optimize results. The fact your AHI was only reduced to 10 events per hour is a bit alarming, and the only way we can know why, is if you get a copy of the study and post it here. You should get a copy of your results anyway and retain them for your permanent record. It is possible that you are dealing with a more complex apnea since the titration still showed 10 events/hour. '
Please get a copy of your results, and do NOT get stuck with a CPAP machine with no detailed data capability. Get one of the machines suggested by bonjour, preferably the Resmed Airsense 10 Autoset.

[HalfAsleep]

Hi,

Was advised to a sleep test while I was in the hospital having a knee replacement.  They had me on a CPAP in the recovery room because I stopped breathing often enough to freak out the nursing staff.  Waited 3 months to take the sleep study because of pain interfering with sleep.  Went and met with the doctor today and she gave me a copy of the full study.  Actually, my primary care physician is now on maternity leave, so I met with a physician that I did not know.  

This physician acted like the results were no big deal showing me that my AHI was 61 during NREM and then 20 with CPAP. During REM I had an AHI of 63 but only 10 with CPCP.  The doctor then said she would put in an order for a CPAP machine and I will have to wait to hear from my insurance company to see if it will be approved.  If approved the CPAP "people" will come to my house and set the machine up.  I said, "thank you" and the appointment was over.

Then I read the report and was like, "WTH"?  I'm looking at all these numbers and they seem a little scary!  Here is what was stated in 
(BOLD indicates where doctor highlighted report)

RESPIRATORY EVENTS:  Very severe OSA was noted with an AHI of 61 events per hour. The non-supine of 51 events per hour rose to 146 per hour during the 14 minutes of supine sleep.  The SpO2 nadir was 85%. 

COMMENT: Initial sleep latency was short at 1 minute with a high normal sleep efficiency of 95% during the diagnostic segment. Sleep was very severely fragmented with an arousal index of 64 events per hour.  During the titration segment, the patient had a prolonged initial sleep latency at 49 minutes and slightly low sleep efficiency due to pain. Sleep fragmentation was still severe, but the arousal index decreased by more than half to 28 events per hour.

I've spent some time reading the site and have at least a basic understanding of what some of this means.  I'd appreciate any member insights as I have nothing with which to compare these numbers.  I'm reading up on the different CPAP machines and will try my best not to get "stuck with a brick"!  

This post translates into HELP!!!!  

Thanks

The substitute MD might just not be familiar with sleep issues.
One thing at a time...
IMO, all you really need to focus on initially from the doc is a prescription for the equipment you want. Maybe look over the features of an Autosense 10 Autoset for Her, climate line hose. From these construct your arguments in favor of that equipment. There's a model prescription for the doc in the wiki or something. You'll hardly need to involve the doc after that.
Then follow through on all your compliance obligations so you don't have the machine taken away for non-compliance. IIRC you'll have to meet the doc again at 31+ days. This will take commitment and putting up with set backs. You'll get plenty of support here.
After that, there won't be more than once in a while check-ins with a doc, and you'll be over bureaucratic baby-sitting.

Good luck!

[SaldusMiegas]

hi dumbusername,

welcome to apneaboard.  You have come to a good place for help.  Here's a look ahead ... 

You might want to call your insurance company before you hear from the DME (durable medical equipment) provider so that you know precisely what your options are.  Since you are recovering from recent knee surgery maybe you have reached your out of pocket limit this year, in which case whatever you need for CPAP might be fully paid by insurance until the end of the plan year, right?  

If that is the case, then it would be to your advantage for the insurance company to purchase your new machine outright versus rent-to-own over 13 months.  That could save you hundreds of dollars out of pocket.  Not all insurance plans will buy versus lease-purchase, but it is worth asking your insurance company directly. You cannot count on the DME to advise you on matters that potentially reduce their profits until you get to know them and trust them.

My insurance did cover the purchase and consequently had no requirement to demonstrate compliance or effectiveness. It was our option to buy or rent, and we were maxed out of pocket that year so we got the benefits and savings I suggest above for you.  The DME wrote up a standard 13 month rent-to-own contract, and I pushed back because I knew what my coverage options were. The DME didn't volunteer that info and of course when I pressed them on it they found it to be true. 

By the way, I don't recommend going through all the things that generally lead people to max out their out of pocket limits on medical insurance, but if you are there then you can probably use a break, so it's worth looking into.  Talk directly to your insurance company and ask them for specifics of what your options are for acquiring the machine, and also what your policy covers for ongoing supplies and equipment.  

So I was fortunate to get my machine purchased up front for zero out of pocket, and I wasn't locked into a long term relationship with a DME on a 13 month lease. Turned out they are an excellent DME and I have stayed with them even when I moved to another area.   Which brings up a second point about DMEs ... you aren't required to buy everything from the same DME who provided your machine. You are the customer just like for any other purchase. You may have other options if one DME doesn't work out well for you, but again check with your insurance plan and stay in network. If your DME is doing or recommending things that don't seem right to you, push back on them, ask questions of them, ask your insurance, and come here and ask questions.  Information is a powerful advantage and there is no reason to let the DME have that advantage over you with all the information available to you for the asking. Once you find a good DME, keep them.  Chances are they will ship to wherever you might live as long as they are still "in network" if you change locations (or even insurance companies).

If your current insurance requires the standard Medicare-style CPAP approach -- which is to rent the machine, demonstrate compliance and effectiveness during the first 90 days in order to continue coverage, then you own it after 13 months -- don't sweat it.  It was still worth asking the question above. The most important thing is to get on a path to better quality sleep.  

It's typical for insurance to cover certain supplies (air filters, mask inserts) quarterly and replacement of some gear (masks, hoses, water reservoirs) every six months. You might get more use out of your gear (it typically lasts longer than the covered replacement intervals) but at least initially you can use the covered service intervals to acquire a spare or two over time so you are sure to have one on hand when an old one wears out.  Once you are getting the benefits of the therapy you will not want to be without while you order a replacement for something that wore out or broke. 

While you can't fully count on the DME to advise you on lease vs buy options, do take advantage of their technical expertise to help you choose and fit the proper headgear.  Also do some research here and on youtube for reviews and how-to videos for choosing, properly fitting, and cleaning your equipment. 

You will probably only see your sleep doc once every three to six months on this topic, and if it is your primary care physician then she will probably appreciate your being proactive especially if you show her the data that demonstrates you are making good decisions. So it will be important for you to download sleepyhead and monitor your data especially in the beginning while you are still searching for the sweet spot on the right mask and machine settings.  The sleep report and titration study are a good starting point for settings, but now you will be able to look at data that reflects how you actually sleep at home in your own bed and using your own equipment versus six hours one night in a Frankenstein bed at the sleep lab. 

You will very likely post some of your data here to get expert eyes on it for helpful interpretation and feedback. If you post your sleep study report and when you post your sleepyhead data, be careful to remove personally identifiable details. No point picking an anonymous user name and then oversharing your personal data.  By that I mean that some people have entered their name and other vitals into the software, and then inadvertently posted reports with more info than they intended to share.  Best practice is set up sleepyhead for public sharing by not entering too much personal data.  All the important data is captured by the machine and not personally identifiable.  Share all you want but not by accident. 

If you are like most of us, the first few months will include many tweaks to tune your therapy, and probably a few mask changes until you find the one that works best for you. You might get immediate improvement and feel a lot better.  I was one of the fortunate ones that way.  I felt so rotten before CPAP therapy, and it was amazing how much this non-invasive, non-drug-related therapy changed my life.  You can find my story in old posts along with lots and lots of other people's stories if you need some encouragement along the way. 

You came to know about your sleep apnea by accident from an unrelated hospital stay, so perhaps you are not feeling miserable or sleep impaired. On the other hand, a lot of us attributed different symptoms to just getting older, and so don't be surprised if some good and maybe unexpected benefits come with your CPAP therapy.  Given your reported SpO2 of 85% and severe AHI, expect good things to come out of this and be on the lookout for them.   

Bottom line is in every facet of your therapy from now on it is important for you to be proactive, get informed, take charge of your therapy, choose your equipment, decide whether to buy vs rent, collect the data, and with help you find here make good decisions about your therapy that will bring you the best results possible.  And expect good things to happen.

best regards,

Saldus Miegas