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GregCavalier Offline

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Post: #11
RE: Please Help
(05-02-2012 02:38 PM)Not Sleeping Well Wrote:  I apologize in advance for the length of what I am about to write.

Last year, at the age of 38, I had a heart attack. Fortunately I was treated quickly, damage was minimal, and my heart function remains normal. As part of a follow up visit my doctor asked a few questions...

There is a correlation with heart disease and sleep apnea, so the questions are relevant. It is also true that many pulmonary doctors have ownership in sleep centers. It often works smoother that way, and there is often a little more communication. The sleep center keeps the physicians up to date on mask types and models, so it is often helpful. But, it puts a disincentive for the physician to do anything outside the box, such as try the newer home sleep monitor tests.

As for test results, no I would not think they would vary so much. Weight will impact it, of course. Average pressure settings are usually 8 to 12. One way to cheaply test is to have your physician give your a 24 hour O2 monitor. They are inexpensive and done as an overnight rental. The O2 monitor allows you to see your oxygen saturation while you sleep without CPAP and see if there is desaturation. It is often a very useful way of screening for sleep apnea. I know because that is the process I was put through when I initially balked at overnighting at the lab.
05-03-2012 07:43 AM
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Post: #12
RE: Please Help
(05-03-2012 12:30 AM)PaulaO2 Wrote:  At 12.3 per hour, that's considered mild apnea.

I am surprised it took 11 cmH2O to get it down to 5.4 AHI.

From what I have read, I am surprised also. Then when you consider at home, at an 11, my average over 230 days is 0.5, it makes me wonder if I even need 11. My understanding is that the lower the better, but that the goal is generally below 5.0?

(05-03-2012 12:30 AM)PaulaO2 Wrote:  What I meant, though, was not the doctor's report but the sleep study data itself.

Ah, I understand. I'll be asking for those. I have a call into my doctor's nurse. Of course I'll have to wait until she calls me back.

(05-03-2012 12:30 AM)PaulaO2 Wrote:  What you could do is titrate yourself vs getting another sleep study.

This is what I'd like to do.


Ok, update time. I just got the call back from my doctor's nurse while I was typing this up.

To say that she was less than friendly would be a pretty big understatement! She said I was free to do with my pressures as I wanted, but that it wouldn't be with the doctors ok. I asked why. She said it would make the data on my machine unreadable, or that the data wouldn't be any good if I changed it everyday. I pointed out that I didn't want to change it everyday. I said I wanted to make a small adjustment and track it over a couple weeks to a month's time. She said the doctor wouldn't give his okay for me to 'self-adjust'. I again asked why. She went back to the data on my machine. I pointed out that I've had my machine for 230 some odd days and they've never looked at the data so far. She said that I should be sending my data to the doctor every 90 days. I said it sure would have been nice had somebody told me that. I pointed out that over 230 days my avaerage AHI was 0.5. She said that at the increased pressure they were able to get me to a 0. I pointed out that a 0 on 1 single night didn't seem like that big a deal as I routinely get a 0 2 or 3 days a week while sleeping in my own bed, not while sleeping terribly at the sleep center. She said that if I didn't want to change my pressure, I didn't have to. I said ok, good, can you put it in my charts that I have permission to leave my pressure at 11. She said that wasn't what she meant. What she meant was that they couldn't make me do it, not that they were allowing me to do so and they wouldn't be putting it in my charts that I had the ok.

Anyway, the talk with her was not productive.

I called the DME to make an appointment to have my data downloaded. I told the technician about my ordeal. She pointed out that she wasn't a doctor and that she couldn't give medical advice, but went on to basically say that the desired increase was surprising considering my current numbers.

Then in frustration I called my employer. According to my employer, all they care about is that I use my machine and that it keeps my AHI below a 5. Otherwise, they didn't care what my settings were and that my settings were between me and my doctor.

So, my take away from all of this is I'm free to do what I want as long as I continue to use my machine and my AHI is below 5.

Once again, sorry for the rambling. I have a lot of pent up frustration.

NSW
05-03-2012 09:44 AM
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JumpStart Offline

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Post: #13
RE: Please Help
(05-02-2012 10:10 PM)Not Sleeping Well Wrote:  
(05-02-2012 05:11 PM)JumpStart Wrote:  3. Not sure if your question is how to get your doc to agree to do so, or how to physically insure what your pressure settings will be.

My question is how to get my doctor's blessing to do so? I asked his nurse as the nurse is the one that returns all of his calls. She said they didn't like for patients to do that becasue according to her if I changed pressures all the time, the data on my machine would be useless. When I call, I am going to tell them I am going to change my pressures and I want some guidelines. I'm not going to ask permission. Also, I am really curious why she was worried about me messing up the data when, currently, they are completely igonoring that data.

I think it would be safe to say, after your most recent conversation with the doc's nurse, that nothing I could suggest (nor you, for that matter) will result in an effective relationship with that doctor. If it were I, and I had the option, I would move on and find another doctor, either locally or nearby, as I suggested earlier. There is hopefully some MD near you who is not so autocratic and self-involved.

Breathing keeps you alive. And PAP helps keep you breathing!
05-03-2012 10:12 AM
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Post: #14
RE: Please Help
(05-03-2012 10:12 AM)JumpStart Wrote:  I think it would be safe to say, after your most recent conversation with the doc's nurse, that nothing I could suggest (nor you, for that matter) will result in an effective relationship with that doctor. If it were I, and I had the option, I would move on and find another doctor, either locally or nearby, as I suggested earlier. There is hopefully some MD near you who is not so autocratic and self-involved.

I agree completely. My plan at this time, tell me if this sounds good to all of you, is to get my data read and transfered to my doctor. Once he sees the data, see if his opinion on self adjusting or on changing my pressure from 11 to 17 changes. If nothing changes, change doctors. The only reason I am going through all of this, is I really liked this doctor. Unfortunately I really dislike his nurse. If I disliked them both I'd change for sure. Seeing as how it is always the nurse that I deal with, I should probably just change...

I tried to get an appointment today with my family doctor to bounce these ideas off of him. Unfortunately he is out of the office until next week.

Let me ask this, do appointments work better to ask simple questions? I really hate to go through the trouble of an appointment just to ask a simple question. I guess I am unsure of when it is okay to call with a question and when I should just make an appointment?

NSW
05-03-2012 10:41 AM
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PaulaO2 Offline
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Post: #15
RE: Please Help
What you are looking for are trends. Your data of the 200+ days are a definite trend.

If you decide to change the pressure, then you need to do it long enough to establish a trend with each change. One night, even five, is not enough. There are too many factors that go into our quality of sleep and apnea events are just part of it. We generally recommend two weeks minimum before anything really can be said one way or the other. Just take it slow. It would be great if you could get your hands on an Auto since it would do it for you faster.

You will want to keep very accurate records then send them to your doc whether they officially ask for them or not. All your work wants is compliance and AHI data. If you do not already know, find out who needs this information. Ask if a simple spreadsheet that you keep track on is enough or if they need the entire report. A spreadsheet would be easy to keep up. Just put in hrs used and AHI and make a graph from it.

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05-03-2012 11:52 AM
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Post: #16
RE: Please Help
(05-03-2012 10:41 AM)Not Sleeping Well Wrote:  Let me ask this, do appointments work better to ask simple questions? I really hate to go through the trouble of an appointment just to ask a simple question. I guess I am unsure of when it is okay to call with a question and when I should just make an appointment?

If you want to try to save this relationship (for lack of a better term), then I would do as I suggested earlier, and make an appt for the sole purpose of having my questions answered. I would notify his/her office when I made the appt that was the purpose. I would have a written list of questions when I went. When asked the purpose of the visit, as they sometimes do at time of the appt, I would NOT say follow-up, or allow them to put that down. Your purpose is to get answers to questions you are not otherwise receiving, and I would state that. And I would further make it clear to the doc during the appt that I felt cut off, that I was not getting effective responses from his nurse, and that something would need to change. I would also ask if it was necessary to have an appt just for the answer to a question. One doc I had, in a somewhat similar situation, simply told his nurse that if I called, to notify him and he would call me back. No intermediary stuff either for her or me. Worked great, and eventually his nurse became more human :grin: - not great, just more human! It has been my experience that many doctors are very good at medicine, and lousy at everything else, from family life to office management. He/she may not even be aware of the problem.

Breathing keeps you alive. And PAP helps keep you breathing!
(This post was last modified: 05-03-2012 12:38 PM by JumpStart.)
05-03-2012 12:36 PM
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Not Sleeping Well Offline

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Post: #17
RE: Please Help
Thank you to everybody for their help and advice. I have been pretty upset the last few days. It doesn't feel as if my doctor wants me to have a hand, or an interest for that matter in my own health. Thanks again to everybody here.

Paula, or anybody else here, let me ask some more questions.

1. Two weeks is generally the recommended minimum time to monitor a change for results. Is there an optimum time? I understand the longer the time the better, but I also realize there is a point of diminishing returns. So, is two weeks also a good length of time to monitor a change, or would say a month be better?

2. When this all started I knew nothing about CPAP and APAP. I agree that based on my desires and me being able to tell that some nights are better than others that it might be nice if I had an APAP instead. I plan to bring this up with my doctor (probably my family doctor as I am pretty sure I am firing the pulmonogist). Does anybody have any suggestions to help me convince the doctor that APAP is the way to go?

3. One other question. Starting with my pressure of 11 and 230 day average AHI 0f 0.5. Does it matter what direction I adjust to start with? My hope would be to maybe not need the machine with continued weight loss. I realize that may not happen, but that is my hope. Would it be okay to adjust down to see how I do?

(05-03-2012 11:52 AM)PaulaO2 Wrote:  You will want to keep very accurate records then send them to your doc whether they officially ask for them or not. All your work wants is compliance and AHI data. If you do not already know, find out who needs this information. Ask if a simple spreadsheet that you keep track on is enough or if they need the entire report. A spreadsheet would be easy to keep up. Just put in hrs used and AHI and make a graph from it.

Paula, I'm a little lost here. I would definitely keep records of my changes for myself. Are you also suggesting I send my hand written records or spreadsheet to my doctor and employer? All my employer wants is a compliance report generated by the machine. They also have asked for a sample of the data. I get the feeling though that my check ups with them will now be less frequent. I basically think they wanted to see that I would establish a pattern of using my machine and I get the feeling they are now pretty much satisfied. That being said, I expect to occasionally have to turn in additional compliance reports. As for sending my downloaded data to my doctor, today was the first day they even mentioned I should be sending it to them, but I definitely will. Are you also suggesting I send them a copy of my personal record of changes?

(05-03-2012 12:36 PM)JumpStart Wrote:  If you want to try to save this relationship (for lack of a better term), then I would do as I suggested earlier...

Jumpstart, I agree with everything you said. My plan right now is to make an appointment after my doctor gets the report from my CPAP machine. I'm having it downloaded tomorrow morning. If he is open to me self-adjusting and everything goes well, fine. Otherwise, I plan to fire him and schedule an appointment with my family doctor. I plan to tell the family doctor what all is going on, tell him I will be involved in my own care, ask about APAP instead of CPAP, and see where it goes from there.

Thanks again everybody! I really appreciate it. You have helped me to feel a little better about this.

NSW
(This post was last modified: 05-03-2012 01:50 PM by Not Sleeping Well.)
05-03-2012 01:30 PM
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PaulaO2 Offline
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Post: #18
RE: Please Help
(05-03-2012 01:30 PM)Not Sleeping Well Wrote:  1. Two weeks is generally the recommended minimum time to monitor a change for results. Is there an optimum time? I understand the longer the time the better, but I also realize there is a point of diminishing returns. So, is two weeks also a good length of time to monitor a change, or would say a month be better?

This would depend on the data you get. If you notice a change or any kind of pattern, then you would adjust the time accordingly. For example:

You lower the pressure to 10.5
By day ten, the AHI has not changed but a tenth of a point or two
You could decide to go ahead and drop to a pressure of 10

Or

You lower the pressure to 10.5
By day ten, the AHI has gone from .2 to 6
You would definitely want to raise the pressure back to 11.

Quote:2. When this all started I knew nothing about CPAP and APAP. I agree that based on my desires and me being able to tell that some nights are better than others that it might be nice if I had an APAP instead. I plan to bring this up with my doctor (probably my family doctor as I am pretty sure I am firing the pulmonogist). Does anybody have any suggestions to help me convince the doctor that APAP is the way to go?

If your insurance paid for the current machine, they are not going to pay for another one for probably 5 yrs. If, however, the machine is still a "rental", they may switch the rental to an APAP. As for the validation, tell your GP about how weight loss often changes the pressure needed and an APAP would show this as well as automatically adjust.

Quote:3. One other question. Starting with my pressure of 11 and 230 day average AHI 0f 0.5. Does it matter what direction I adjust to start with? My hope would be to maybe not need the machine with continued weight loss. I realize that may not happen, but that is my hope. Would it be okay to adjust down to see how I do?

If your AHI is that good (and it is very, very good) you could justifiably go down in pressure by a half point at a time. Or you could leave it alone. It is working and why fix something that isn't broken? Many people would love to have an AHI that low.

Quote:Paula, I'm a little lost here. I would definitely keep records of my changes for myself. Are you also suggesting I send my hand written records or spreadsheet to my doctor and employer? All my employer wants is a compliance report generated by the machine. They also have asked for a sample of the data. I get the feeling though that my check ups with them will now be less frequent. I basically think they wanted to see that I would establish a pattern of using my machine and I get the feeling they are now pretty much satisfied. That being said, I expect to occasionally have to turn in additional compliance reports. As for sending my downloaded data to my doctor, today was the first day they even mentioned I should be sending it to them, but I definitely will. Are you also suggesting I send them a copy of my personal record of changes?

No, and you answered my question. They (the employer) want machine generated data so that is what you should give them. You could use a highlighter and mark the numbers they are looking for (hrs and AHI).

IF you are going to be mucking with the pressure, then you definitely want to keep records for yourself. It can be a simple notepad by the bed where you keep track of the day you moved the pressure and from what to what you changed it to. For example:

5/3/12 - moved from 11 to 10.5; next change to be 5/17

It would be too easy to forget when you changed it and to what.

It is always a good idea to keep track of doc appts and the outcome and the decisions and whatever. I have multiple issues and I keep an updated text file of dates of diagnosis, test dates, what we tried, what worked, what didn't, etc. This came in very handy recently when I went to a new doc and handed him the file. He was able to see immediately what medications I had used and what did not work. There is no way I would have accurately remembered all that and was able to avoid wasting both our times re-trying something. Instead, he narrowed down our choices tremendously.


The best case scenario is for you to settle things with your sleep doc or to find another one. While we advocate patient empowerment, we also advocate seeing your doc on a regular basis.

PaulaO2
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-03-2012 02:17 PM
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CHanlon Offline

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Post: #19
RE: Please Help
(05-03-2012 01:30 PM)Not Sleeping Well Wrote:  3. One other question. Starting with my pressure of 11 and 230 day average AHI 0f 0.5. Does it matter what direction I adjust to start with? My hope would be to maybe not need the machine with continued weight loss. I realize that may not happen, but that is my hope. Would it be okay to adjust down to see how I do?

Just to touch on this, your numbers are amazing, people have pointed that out already, so that's not a surprise to you. Odds are that you can lower the pressure without too much ill effect - remember you want to stay < 5 AHI.

It's also likely that that number - your pressure - will go down as your weight declines (awesome job on the weight loss, btw, that's pretty amazing all on its own) but I don't know of anyone that's every gotten off CPAP once they've been diagnosed. And in your case, where your job is involved, I'd say that isn't going to happen, unless you can present them a sleep study that shows you're below the AHI horizon for treatment.
05-03-2012 02:39 PM
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Post: #20
RE: Please Help
(05-03-2012 02:39 PM)CHanlon Wrote:  I don't know of anyone that's every gotten off CPAP once they've been diagnosed. And in your case, where your job is involved, I'd say that isn't going to happen, unless you can present them a sleep study that shows you're below the AHI horizon for treatment.

That is how I see it too. I know a lot of people have a hard time coming to grips with having apnea, or want to deny it, but honestly, I still wonder if I have it and I think my numbers may back that up. If I have it, I am fine with that, and I'll use my machine, but I'd like to be using it at the lowest possible setting.

Does anybody have any methods for not having high anxiety considering the sleep tests? I sometimes wonder if I could have a study done while getting my normal sleep if I wouldn't do significantly better. Instead I go and have some of the most vivid nightmares of my life. I'm thinking on my next sleep study, I'll ask for a home study. Thoughts?
05-03-2012 03:00 PM
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