Replies to This Discussion

Permalink Reply by birdshell on November 15, 2009 at 5:24pm

I have a ResMed Vantage, with LCD panel information available daily until noon, as well as weekly, monthly, semi-annual and annual averages. This is enough monitoring for me, but there is the possibility of having more careful monitoring should there be any further indication of need.

I have a copy of my prescription on file with my doctor, which is actually safer than in my possession. It is a lot easier to call and ask for a copy than to find the "safe" spot in which I have placed my copy.

I do know what my AI, HI, and AHI mean as well as cm H2O. I also know what a leak is, LOL.

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Permalink Reply by Jan on November 15, 2009 at 5:38pm

Hi-- I tried looking up what Flow Limitation Index is and only came up with very esoteric research studies etc...can someone give me the layman's explanation of what it is?

Thanks!

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Permalink Reply by The Dreamer on November 17, 2009 at 12:21pm

1. Yes
2. Yes
3. No (though I did turn it on when I was poking around last time, but its only 7/30 day averages....)
4. Yes
5. Sort of - just have summary as well.
6. Yes, sort of....not the detailed script that got me a data capable machine from DME, but just a simple "CPAP @ 7.5cm" for in case I need it when traveling.

I have a Respironics M-Series Pro and use EncoveViewer and USB Reader....

I probably don't monitor my therapy as closely as I used to....used to check it at least every weekend, now a few weeks will slip by without checking it. I'll check it if I suspect a problem or I'm trying something new....like having the flu or trying out FFMs.

I discovered that even though my doctor scripted that he wanted the data to monitor my treatment. The RT only sends the first page of the report (compliance) to the doctor. Says, the doctor has to ask it, to get details...apparently each time. Last couple of times, I just run my own report and take that in.

Though I've graduated early from DME needing to get frequent data...because I'm fully compliant, little to no leaks and low AHI. Though I do pop in more than once a year for other reasons.....oh wait, I haven't been at this for a year yet.

I'm still thinking of getting an extra machine, though I don't know what to get...though I'll probably be on my own (since it'll too soon to get one on insurance anyways...) Not sure I need it to be the same machine now, but I'll want to be able to look at my own data.

The Dreamer.

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Permalink Reply by wlenz on November 17, 2009 at 1:29pm

I try to use professionals that I trust, but we always start out with the understanding that we will go through my therapy together. I insist that I know what is going on. I have a copy of my sleep report; I had to request this. I have a prescription, had to ask for this. I have software, card reader, and download the card data every Sunday. I check the report for anything that might need attention, then file it away. Without this data, you are flying blind. Let's face it, while you are sleeping, you have no idea what is happening. I discovered excessive leaks and corrected them. I evaluated different masks and with the data, could easily tell which one provided the best sleep. My doctor was impressed with the printout and changed the scrip slightly because of the data I provided him. I do not make changes in pressure without his advice, and I believe he appreciates this. We work together and I am satisfied. Before I had the software, the doc would ask me how I am sleeping. Well, I am sleeping better than before being diagnosed and treated, and he would not make any changes. Now, life is better.
Bll

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Permalink Reply by Mary Z on November 17, 2009 at 1:44pm

sleepycarol, I monitor the readout on my ResMed Auto VPAP25 every day. I know what the numbers mean (leak, pressure, AHI, AI, VT, RR, minute volume). I can send the ResScan card to the DME, but haven't had the machine a month yet and was going to wait until then. I don't have software, I understand it's not available for end users for ResMed.
I don't have a copy of the last two (of four) sleep studies and I'm only interested in the Doctors dictation.
I don't have a copy of my prescription, but feel like I could get one any time I wanted it. All in all I am satisfied with my Doctor and my level of participation. I am a RN and try not to nurse myself.

Mary Z.

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Permalink Reply by Darillyn Patterson on November 17, 2009 at 2:06pm

Hmmm....I didn't even know we could monitor it ourselves. My pulmonologist saw me after using the CPAP for around a month or so. I brought my datacard with me. He came back into the office, asked me if I had children, and said, "Tell them that their mother got 100%." He was referring to compliance. I made sure to wear it every night, all night. Then he told me, "Come back and see me in a year, unless you have a problem." He didn't even request that I periodically mail them the datacard or anything!
I'll have to admit that I haven't read/studied the book that came with the machine. It's a ResMed Auto Set II. Before I saw this posting, I called my insurance company. That was just a few minutes ago, actually. I asked if they cover the cost of replacing parts. They said I just need to get a letter of medical necessity from the doctor who prescribed the machine, and they will pay for it. After paying two months' rental for the machine, they gave me the option of purchasing it. They just sent out the check yesterday for purchasing it.
I called the pulmonologist's office and told them that I need to replace the soft rubbery component of the nasal mask that goes around my nose and asked them to send a letter of necessity to the company who provided the CPAP machine.
The only thing I've done is to notate the pressure setting each morning, just before I shut it off. I write the number on the calendar, just for the heck of it. It seems to be different every day. It ranges from a low of 6.8 to a high of 11. For the most part, it usually is somewhere between 7 - 9. The day it was 11, I notated that there was condensation in the hose. Since then, I turned down the setting one notch. Another time when it was 10.5, I noted that there was an air leak and my mouth was dry. I almost never get up during the night. Sometimes I wake up briefly, but I normally stay in bed.
I do not have a copy of my prescription. There are 8 pages of printed material with a number of graphs/charts for my sleep study. My identical twin sister also has the same kind of machine I have, although it's set at a specific pressure. She says it's working for her. I'm not so sure if I could say I'm seeing much of a difference. I don't jump out of bed feeling completely refreshed, anyway.

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Permalink Reply by Judy on November 17, 2009 at 3:07pm

Darillyn, you say you are not jumping out of bed feeling completey refreshed yet, you have that full scored data summary report w/condensed graphs but haven't been at all curious enough to ask about what it all means, you have a fully data capable CPAP, you've seen your reported pressure as low as 6.8 cms and as high as 11 cms and you're SATISIFED to just wait a year to see your sleep doctor again and don't have any questions at all yet??????

Boggles my mind! I'm the opposite of you. Curiosity and wanting the most effective therapy I can get just would NOT allow me to be that complacent! I'''m sure that yoru sleep doctor appreciates more patients like you and hopes he NEVER runs into one like me!

Darillyn Patterson said:

Hmmm....I didn't even know we could monitor it ourselves. My pulmonologist saw me after using the CPAP for around a month or so. I brought my datacard with me. He came back into the office, asked me if I had children, and said, "Tell them that their mother got 100%." He was referring to compliance. I made sure to wear it every night, all night. Then he told me, "Come back and see me in a year, unless you have a problem." He didn't even request that I periodically mail them the datacard or anything!
I'll have to admit that I haven't read/studied the book that came with the machine. It's a ResMed Auto Set II. Before I saw this posting, I called my insurance company. That was just a few minutes ago, actually. I asked if they cover the cost of replacing parts. They said I just need to get a letter of medical necessity from the doctor who prescribed the machine, and they will pay for it. After paying two months' rental for the machine, they gave me the option of purchasing it. They just sent out the check yesterday for purchasing it.
I called the pulmonologist's office and told them that I need to replace the soft rubbery component of the nasal mask that goes around my nose and asked them to send a letter of necessity to the company who provided the CPAP machine.
The only thing I've done is to notate the pressure setting each morning, just before I shut it off. I write the number on the calendar, just for the heck of it. It seems to be different every day. It ranges from a low of 6.8 to a high of 11. For the most part, it usually is somewhere between 7 - 9. The day it was 11, I notated that there was condensation in the hose. Since then, I turned down the setting one notch. Another time when it was 10.5, I noted that there was an air leak and my mouth was dry. I almost never get up during the night. Sometimes I wake up briefly, but I normally stay in bed.
I do not have a copy of my prescription. There are 8 pages of printed material with a number of graphs/charts for my sleep study. My identical twin sister also has the same kind of machine I have, although it's set at a specific pressure. She says it's working for her. I'm not so sure if I could say I'm seeing much of a difference. I don't jump out of bed feeling completely refreshed, anyway.

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Permalink Reply by BeeAsleep on November 17, 2009 at 3:44pm

Do you monitor your own therapy? Yes.

Do you have the software and reader? Yes I do, I use a ResMed S8Autoset II. My APAP only holds complete information for 4 days. If you want to know all the details upload from your machine and put it in the ResScan software program.

Do you check the data via the screen on the machine? Yes, If I want a quick check from the night before I look at the info on the screen.

Do you know what the numbers mean? Yes I do.

Do you have a copy of your sleep study? Yes I do. I insisted on the whole report, not just the summary.

Do you have a copy of your script? Yes I do.

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