"please keep me updated about oximeters "
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What AHI level is good enough to be considered successful CPAP therapy?
My recent reports with the APAP show average AHI of 5.3-6.1 over 10 weeks. I currently notice readings on the machine that indicate a weekly average AHI of 6.9 and a 30 day average of 6.4. (My doc is not aware of those numbers currently). Based on the report numbers of 5.3 , my doc thinks I am doing fine and does not see need to do anything else. He has also given the o.k. for me to discontinue O2 supplementation based on a one night oximetry test with desats averaging 91% with one low of 80% and the SpO2 <90 was for 7.6% of the total time. It seems like these numbers are pretty good but also sort of borderline. Considering that my original sleep studies indicated severe complex apnea, this is a great improvement on paper. I am aware of the cutoff AHI of 5 for diagnosis but this may be subjective for therapy.
Does anyone have an opinion as to whether I should accept the current status as good enough or seek further tweaking? I have expressed to my doc that I do still feel tired often, and sometimes have shortness of breath (while sedentary). He listens to my lungs with his stethoscope, finding them clear, and says nothing in response, indicating there is nothing else for him to do at this time. The results indicate to him that I should continue APAP therapy as is without the O2 and lose weight if possible (I'm working on the weight part, with goal of changing BMI of 30 to 25). I am planning on getting reports from the DME regularly, but the doc is not interested in having them ongoing, with the exception of 2 weeks before a 6 month follow up appointment.
I feel perplexed as to whether this is good enough, as I don't like the way I feel on a regular basis, but don't know what else to say to the docs. They do not have an answer to my expectations of feeling better, nor suggestions, other than lowering my expectations. I think I will try to pursue this with my PCP rather than the pulmo/sleep doc. I'm wondering if I should seek a second opinion, or give it another 6-12 months to see if I notice improvements in my overall well being and stats reports that I will gather independently.
Does anyone have an opinion as to whether I should accept the current status as good enough or seek further tweaking? I have expressed to my doc that I do still feel tired often, and sometimes have shortness of breath (while sedentary). He listens to my lungs with his stethoscope, finding them clear, and says nothing in response, indicating there is nothing else for him to do at this time. The results indicate to him that I should continue APAP therapy as is without the O2 and lose weight if possible (I'm working on the weight part, with goal of changing BMI of 30 to 25). I am planning on getting reports from the DME regularly, but the doc is not interested in having them ongoing, with the exception of 2 weeks before a 6 month follow up appointment.
I feel perplexed as to whether this is good enough, as I don't like the way I feel on a regular basis, but don't know what else to say to the docs. They do not have an answer to my expectations of feeling better, nor suggestions, other than lowering my expectations. I think I will try to pursue this with my PCP rather than the pulmo/sleep doc. I'm wondering if I should seek a second opinion, or give it another 6-12 months to see if I notice improvements in my overall well being and stats reports that I will gather independently.
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Replies to This Discussion
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Permalink Reply by Judy on
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First off, which brand and model APAP are you using? If you have a couple of extra bucks, personally, I would buy the professional software and (if necessary) card reader. Then I would NOT have to rely on the DME provider or anyone else to produce my data reports. And "I" would KNOW what is going on when I need or want to know it.
Since you mention some daytime shortness of breath when sedentary I'd also seriously consider buying my own recording oximeter.
Insurances won't buy either one for you. Its strictly out of pocket. But you don't need a script to buy either one from an online provider.
The Contec CMS-50D Plus (has to be the Plus) is a good one that comes w/its own software and can often be found for under $150 if you shop around online. Sometimes its even on sale for right around $100.
Sometimes you can get the necessary card reader and PAP software cheaper in a bundle than you can get the cable reader alone and then find a pirated copy of the software. Sometimes its cheaper to buy the necessary card reader and go w/the pirated software.
The brand and model APAP you have will tell us which software and cable reader you will need.
Your therapy MIGHT be doing the best that can be done. BUT - expecting an experienced PAP user to go more than 2 weeks w/o checking data and making therapy changes accordingly is out of line in my book. I'd be looking for a new sleep doctor. Since you have Complex Sleep Apnea I really wouldn't advocate your tweaking your therapy yourself - even if you have the PR SystemOne APAP or the Resmed S9 AutoSet. Frankly, I am gonna guess that you need to be switched to a specialized for CSA PAP such as the Resmed Adapt SV Enhanced or the Respironics Adapt SV. Sometimes your insurance requirements interfere w/your getting the needed equipment in a timely manner, i.e. some require an insured to "fail" CPAP therapy before the insurance will pay for a bi-level, etc., etc. That may be the reason your current sleep doctor is dragging his feet and turning you loose for the next 6 months or so. That's a crock and a cop out on his part in my estimation but about what I would expect from most sleep doctors.
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Ooops! Another thing I think we all forgot to ask: what is your AI? We like to see the AI 1.0 or less. The AHI is much less important if the AI is 1.0 or less and the rest of the AHI is made up of hypopneas. It also gives an indication of just what therapy adjustments MIGHT help.
AND, of course, in the end it boils down as Rock Hinkle asked, to HOW DO YOU FEEL?
And, yup, like jnk, I'm just another opinionated patient. Rock Hinkle is the pro.
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Permalink Reply by RL on
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Thanks for all your thoughts everyone. My current rental unit is PR SystemOne APAP with heated humidier. I agree with you all that how I feel should be as important as stats, if not more so. I would like to get my own oxymeter to keep an eye on the O2 level every so often and would also like to get my own software and reader once I know I will have this particular APAP long term. It is a hassle to go to the DME to get print outs all the time, but I think for now it is worth it. I do need to wait for now on these purchases until my employment status is more definite (currently on a temp job after a lay off, using COBRA for current health care). I also want to make sure I'm getting what I really need asap in case I can not afford the insurance at some point. As a minimum, I have my original PR CPAP with no efficacy data and one steady pressure. It was purchased for me right off the bat by my insurance, right before the employer switched insurors. Too bad it wasn't the APAP then. At least my pressure with the APAP generally stays close to my original pressure of 7. I have asked three different medical team people if one night with an oxymeter was really adequate to determine if the APAP is sufficient without the oxygen and they each said yes. I believe the only way I will know if this is really o.k. over time is to buy my own oxymeter, which I will do as soon as my budget allows. I use Apple computers so I don't know if the software is compatible for this and also for the APAP software. If I have to buy an extra computer just to run this software, that will take more time to afford. Thanks Judy, for the brand recommendation. I will keep that on file until I can get one.
I am not satisfied with how I feel on a regular basis, but my partner thinks I am better, more functional, less complaining. Maybe he is more objective. I do think my fuzzy brain factor is lessening and some days it may also be affected by migraine. I also think I need to work on getting more sleep, more exercise and talk to my PCP about the situation. I also am thinking I should see an ENT doc to check for other issues in that direction.
For reference, I am looking at three sets of APAP reports with the following results:
Avg. OA Index - .8 .6 .5
Avg. CA Index - 2.8 3.5 3.3 (that is with oxygen)
Avg. Hyp.Index 1.7 2.0 1.9
Avg. RERA Index .2 .2 .2
Avg. AHI 5.3 6.1 5.7
I don't expect my PCP will have more insight into these stats more than the pulmonologist but I will keep collecting data and bringing up issues as I see them with the docs. I will also take advantage of any chance I get at A.W.A.K.E. group meetings or elsewhere for second opinions. I don't think my pulmo would advocate for me to get the Adapt SV unit, as he thinks the APAP is doing fine. I may ask if I could try one as a rental just to see if there is any difference. Not sure if the insurance would go for that. I'm considering trying to talk to the sleep doc who evaluated my PSGs and included notation of possible need for ASV. He is not in my current team, and would have to be consulted apart from the sleep lab per their protocol. If I can loose 20-30 pounds, then I can push for another sleep study. That will take some work! I'll keep all of your suggestions in mind as I continue to seek improvement in health and quality of day to day function.
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I know apneas are complete lack of breathing verses hypopneas at partial. My husbands AI 0.1 to 2.3 and hypopneas in the 5-11 range on a nighttime basis. Hypopneas were way greater than apneas during the sleep study as well. How do you judge treatment with hypopneas being more frequent? Wouldn't we be seeing a reduction in hyponeas with cpap?
Judy said:Ooops! Another thing I think we all forgot to ask: what is your AI? We like to see the AI 1.0 or less. The AHI is much less important if the AI is 1.0 or less and the rest of the AHI is made up of hypopneas. It also gives an indication of just what therapy adjustments MIGHT help.
AND, of course, in the end it boils down as Rock Hinkle asked, to HOW DO YOU FEEL?
And, yup, like jnk, I'm just another opinionated patient. Rock Hinkle is the pro.
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Permalink Reply by RockRpsgt on
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RL, We have seen a huge improvement in your numbers since the beginning. Whatever you and your team are doing seems to be working. Do not lose faith as I see continuous improvements in your future. Even the healthiest of people have bad and good days. PAP therapy will not change these trends of life. Trust in your docs and in your partner.
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I am still waiting for a reply to this question. jnk?
The Wife in OSA Life said:I know apneas are complete lack of breathing verses hypopneas at partial. My husbands AI 0.1 to 2.3 and hypopneas in the 5-11 range on a nighttime basis. Hypopneas were way greater than apneas during the sleep study as well. How do you judge treatment with hypopneas being more frequent? Wouldn't we be seeing a reduction in hyponeas with cpap?
Judy said:Ooops! Another thing I think we all forgot to ask: what is your AI? We like to see the AI 1.0 or less. The AHI is much less important if the AI is 1.0 or less and the rest of the AHI is made up of hypopneas. It also gives an indication of just what therapy adjustments MIGHT help.
AND, of course, in the end it boils down as Rock Hinkle asked, to HOW DO YOU FEEL?
And, yup, like jnk, I'm just another opinionated patient. Rock Hinkle is the pro.
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Are you really a self titrator? OMG! Come on jnk. I know that we do not always agree, but that one hurt. You are very wanted here at SG. I personally follow and learn from a great many of your post. Banyons as well. Do not tell him cause I will deny it. Besides I would call you more of a tweaker than a titrator.
Good explanation! Much better than I could have done.
j n k said:Which part, Rock?
CPAP treats hypopneas. It generally takes more pressure to prevent hypopneas than it does to prevent obstructive apneas.
What the home machine reports has to do with what brand and model of machine it is. If it is a ResMed, try to keep home-machine-estimated AI below one as much as you can. After that, see if a slight bump in pressure lessens the number of home-machine-estimated hypopneas without raising home-machine-estimated AI. If it does help the numbers, great, leave it. If it doesn't help the HI numbers (or if it makes estimated AI worse), put the pressure back down where it was. That is what a self-titrator would do.
That is what I meant by my words above: "The numbers from the home machines are there to help you to get your therapy for sleep the best it can be, not to judge the effectiveness of the therapy in improving sleep."
I was trying not to spell it out so I wouldn't offend anybody. :-)
I sometimes get the feeling that we self-titrators aren't so welcome here, so I try to tread lightly.
jeff
Rock Hinkle said:I am still waiting for a reply to this question. jnk?
The Wife in OSA Life said:I know apneas are complete lack of breathing verses hypopneas at partial. My husbands AI 0.1 to 2.3 and hypopneas in the 5-11 range on a nighttime basis. Hypopneas were way greater than apneas during the sleep study as well. How do you judge treatment with hypopneas being more frequent? Wouldn't we be seeing a reduction in hyponeas with cpap?
Judy said:Ooops! Another thing I think we all forgot to ask: what is your AI? We like to see the AI 1.0 or less. The AHI is much less important if the AI is 1.0 or less and the rest of the AHI is made up of hypopneas. It also gives an indication of just what therapy adjustments MIGHT help.
AND, of course, in the end it boils down as Rock Hinkle asked, to HOW DO YOU FEEL?
And, yup, like jnk, I'm just another opinionated patient. Rock Hinkle is the pro.
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Thanks for this wisdom and perspective Rock! I will keep watching my numbers, learning more as time goes by and get the data software as I can. I am thinking that maybe I need to learn more about migraines and see what I can do to minimize that too; maybe other undetermined conditions also. I hope I can learn to tweak my own therapy in time, while still working with the professionals as needed. I will be referring back to all of your comments and suggestions as I keep working on all of this stuff.
Rock Hinkle said:RL, We have seen a huge improvement in your numbers since the beginning. Whatever you and your team are doing seems to be working. Do not lose faith as I see continuous improvements in your future. Even the healthiest of people have bad and good days. PAP therapy will not change these trends of life. Trust in your docs and in your partner.
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Can someone also explains what AHI OAI CAI means and how to interpret the numbers?
I am using ResMed S9 and my presure is 7, AHI= 17.8, OAI 15.5, CAL=0.4
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AHI = apnea/hypopnea index = the number of apneas and hypopneas per hour
OAI = obstructive apnea index = the number of obstructive apneas per hour
CAI = central apnea index = the number of clear airway apneas per hour
apnea = temporary cessation of breathing
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Permalink Reply by Henning on
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This is a reply to your original tread. I think you've locked it. It is not possible to reply.
Your ResMed S9 has a standard SD-Card to store data. You can send this card to your sleep clinic, or you can use a special S9 USB Card Reader and some ResMed software, so you can analyze your data by yourself.
Your ResMed S9 machine stores among others the following data:
AHI - Apnea Hypopnea Index
AI - Apnea Index
HI - Hypopnea Index.
Your AHI is the total of your AI and your HI.
Unlike S8 and other machines, your AI is divided into the following measurements:
OAI - Obstructive Apnea Index
CAI - Central Apnea Index
UAI - Unknown Apnea Index
Here at the beginning of your treatment you should pay particular attention to your AI (OAI). This is much too high, so you have problems with your setup. I would recommend you to contact your sleep clinic.
Henning
E Engel said:Can someone also explains what AHI OAI CAI means and how to interpret the numbers?
I am using ResMed S9 and my presure is 7, AHI= 17.8, OAI 15.5, CAL=0.4
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