Post
by drubin007 » Thu Jul 30, 2009 12:58 pm
How did I miss this thread until now?
wow. Talk about some drama.
I am not taking sides in any way, but do want to interject torwards Seattle... This is in now way meant to stir the pot or take sides on either side of the field...
I am not your typical osa patient. 40 years old, BMI 24.4Kg, 6"1, average weight, non smoker (for a few months now), seldom drink. I found my way into this world because I was in a doctor (ENT) office because I had a clogged ear. I casually mentioned I snored. Teach me to open my mouth... that bought me 2 nights in a sleep lab, and the discovery that without cpap I drop to 62% oxygen in my blood levels, and have a mere 112 obstructive, 108 hyponeas in a night. Wake up feeling ok though, so still in denial.
Sadly, it took 2 months to get both reports from the doctor showing before and after using a cpap. During this time I faithfully recorded all efficacy data from my resmed machine...(ai, hi, ahi, and leak rates). I also came in here and read a lot and asked a lot of questions (as I continue to do).
All things being equal, I feel the same as I did before I started this journey. I have adjusted my pressure a few times, changed masks, changed the epr and started using a chin strap. Granted, eveyone is different, but to me, data was all I had to go on.
There is a lot of members in here that know if they have a good night or a bad night based on how they feel. I am lucky that I am not one of them. At least not yet. it is that efficacy data that has kept me 100% compliant. As corny as it may sound, trying to achieve an ahi < 5 was (and still is) my goal. I was able to get my leak rate down to 0 most nights on the resmed, but the other numbers? Just could not get there. I saw my doctor for a follow up last week and left him speechless. I wound up going in and telling him my therapy and what I need (I wanted an auto machine, to try and improve on my situtation). He agreed and wrote me a new prescription. I now have a new machine that is an auto, but lacks efficacy data. The doctor, the dme and the fisher and paykel sales rep all agree to give me the performance maximizer software (for free). not only that, but the sales rep is going to come install it and teach me how to use it. 2 nights on a machine without efficcy and it is stressful to me not knowing. I still feel the same, but all this machine tells me is that I had an ahi of 2 one noght and 3 the next. So what does that mean? For me at least, for compliance and peace of mind, I need to see where I am having events, when my mask is leaking, at what range do I recieve maxium benefit.
I am very fortunate in that I do not experience bad problems now, hopefully it is a result of catching it early enough. I feel your pain if you have headaches, and a lot of the other ill effects of it. I am also fortnate to have a dme (well now I am on the second one, as the first did not have this machine) that cares. I have read too many horror stories of other dme's that make death seem a less painful choice.
Sorry, I think I sort of went on a spin there, but bottom line: I think a machine that provides efficacy data (if a crd reader and software are not an option) is a no brainer. Most people will wake up and know they feel good or bad, but to truly know if your therapy is working, I think we need more. I would suspect that si why the compliance rate with cpap is not what it should be.
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