"please keep me updated about oximeters "
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Well, I saw the new doctor yesterday and I really like her. She just joined Kaiser Hospital, it was her first day, and I was her second patient so she had tons of time to spend with me. She's young and full of fire and also has OSA. The doctor is an hour away from me and wouldn't it figure I'm halfway to the doctor when I remember, I FORGOT MY MACHINE!!!!!!! Oh my gosh, I was so mad at myself. I continued to the appointment and after talking to her for some time she said that I could go back home and get my machine so she could hook it up there to see what kind of info it could give us. I had to drive for 4 hours yesterday so I had a lot of caffeine that kept me awake but then it took me hours to fall asleep last night. Darn.
Turns out that even though I was 100% sure I had all leak issues resolved they couldn't get any information off the machine because there is a massive leak issue. 1.5. I was shocked and still find it hard to believe. They decided to give me a extra small mirage quattro mask and leave me at the current pressure of 18/14 to see if that would resolve the leak issue and to see what data comes up on the machine next week. I go back on the 12th to have the pressure lowered to 13/9. The new doctor wants to get me on a fully data capable machine but needs to get approval since it's only been 2 years.
According to my latest sleep study though at the lower pressure my PLM went up from 25 to 57. Doesn't say on the report if any woke me up. There's only one page of information and it doesn't say much. Rem Sleep 11%. Sleep efficiency was only 64% so I didn't get much sleep.
To all you patients who are still not feeling great I urge you to talk to your doctor and figure out why. Fight for freedom from fatigue! "F.F.F." Though I'm all sure we can come up with some other things those F's could stand for!!! Hopefully I am on my way to getting the proper therapy.
Turns out that even though I was 100% sure I had all leak issues resolved they couldn't get any information off the machine because there is a massive leak issue. 1.5. I was shocked and still find it hard to believe. They decided to give me a extra small mirage quattro mask and leave me at the current pressure of 18/14 to see if that would resolve the leak issue and to see what data comes up on the machine next week. I go back on the 12th to have the pressure lowered to 13/9. The new doctor wants to get me on a fully data capable machine but needs to get approval since it's only been 2 years.
According to my latest sleep study though at the lower pressure my PLM went up from 25 to 57. Doesn't say on the report if any woke me up. There's only one page of information and it doesn't say much. Rem Sleep 11%. Sleep efficiency was only 64% so I didn't get much sleep.
To all you patients who are still not feeling great I urge you to talk to your doctor and figure out why. Fight for freedom from fatigue! "F.F.F." Though I'm all sure we can come up with some other things those F's could stand for!!! Hopefully I am on my way to getting the proper therapy.
Views: 13
Replies to This Discussion
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Permalink Reply by Mike on
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Doctor sounds promising. Wondering why she would need approval to write the script for the new machine. She is the doctor. Whether the insurance company will pay for the machine is not her problem. It's yours. If you want the script she should provide it.
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Permalink Reply by RockRpsgt on
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It is protocol Mike. A good doctor not only diagnosis, and treats, but goes through the steps to insure that a pt has little out of pocket expense. I agree that pts need to take more control of their health and PAP therapy. It is also important for your relationship with a doctor to let them do their job as well. Bonesigh will more then likely get a new machine out of this.
Mike said:Doctor sounds promising. Wondering why she would need approval to write the script for the new machine. She is the doctor. Whether the insurance company will pay for the machine is not her problem. It's yours. If you want the script she should provide it.
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Permalink Reply by bonesigh on
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Thanks guys. It's been 2 nights with the new smaller mask. I don't feel any better. Still like the walking dead ):
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Permalink Reply by amott1973 on
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Sorry you're not feeling any better, but that doc sounds promising. That's a step in the right direction right there! I hope you get the machine. I'm trying to get one too, but running into walls with my primary care doc. Next step will be going to the pulmonologist. sigh.
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Permalink Reply by susan mccord on
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Hi bonesigh--boy, your entry here sure makes me wonder about my machine. I'm finally getting about 5 hours solid sleep on CPAP. Unable to go back to sleep once I wake up. My hosing connection just started leaking within the past 2 days. Seems like a big leak to me, but I have nothing to compare it to. I had a couple of pretty good days yesterday and the day before. Today, after above-reported sleep pattern, I'm really feeling exhausted again. I'm gonna call DME today and have this machine checked over. I'm not at all confident that the pressure's where it should be after things I've read here. I have an appointment with a really good sleep specialist 9/1, but meantime I'm gonna have to do SOMETHING. Your F.F.F. statement describes my attitude totally. I'll do whatever I'm supposed to do--I just don't know what that is at this point! I feel worse now than I did before I was diagnosed. It's frustrating after having 2 days of feeling really pretty good....I've said this before--I'm sure people on here are sick of hearing me say it--but I cannot understand why the beginning stage of treatment is begun with little to no instruction and/or orientation to problem-solving or what to expect. If this disease is so dangerous, and I have no reason to thing that it's not, they sure are leaving a lot of people out here twisting in the wind.....
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twisting in the wind, indeed. that's the reason you find people coming online to find answers. they can't get them elsewhere.
susan mccord said:Hi bonesigh--boy, your entry here sure makes me wonder about my machine. I'm finally getting about 5 hours solid sleep on CPAP. Unable to go back to sleep once I wake up. My hosing connection just started leaking within the past 2 days. Seems like a big leak to me, but I have nothing to compare it to. I had a couple of pretty good days yesterday and the day before. Today, after above-reported sleep pattern, I'm really feeling exhausted again. I'm gonna call DME today and have this machine checked over. I'm not at all confident that the pressure's where it should be after things I've read here. I have an appointment with a really good sleep specialist 9/1, but meantime I'm gonna have to do SOMETHING. Your F.F.F. statement describes my attitude totally. I'll do whatever I'm supposed to do--I just don't know what that is at this point! I feel worse now than I did before I was diagnosed. It's frustrating after having 2 days of feeling really pretty good....I've said this before--I'm sure people on here are sick of hearing me say it--but I cannot understand why the beginning stage of treatment is begun with little to no instruction and/or orientation to problem-solving or what to expect. If this disease is so dangerous, and I have no reason to thing that it's not, they sure are leaving a lot of people out here twisting in the wind.....
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