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Re: Which law says we can't change our own pressure flow?
Posted: Thu Apr 29, 2010 3:15 am
by pdean44
In essence you are only changing it to what he said he prescribed and supposedly set it to. Since he said he changed it himself then you wouldnt be changing it he did
I have often wondered the same thing about changing your settings. Good info here.
Re: Which law says we can't change our own pressure flow?
Posted: Thu Apr 29, 2010 8:16 am
by sleep lover
here's an interesting and embarrassing AHA! moment. It happened at 2AM. I woke up because my nose was so stuffed I had to sneeze. It dawned on me that perhaps I didn't put the card in correctly. Why at 2AM, I don't know... why the doc nor the tech at Respironics didn't suggest it, I'll never know... but, I hadn't put the card in right. I'd think the window would've alerted me, or that it wouldn't work correctly without it, but it looked exactly as it did before I took it out to bring to the doctor last week. It never crossed my, or anyone's mind. Furthermore, once I put it in right,indeedy, he had put my pressure down to 10.5, thank you very much, but he also took away my AHI and my ramping. At 2AM I wasn't prepared to start up again unramped, I was pissed at the changes he'd made w/o discussing them with me, and I thought I'd give my twitching eye and stuffed nose a break, taking a chance of a stroke or heart attack. Silly me, silly doc, silly Respironics tech. Tell me this is going to get better. I look and feel like kaka. Lisa
Re: Which law says we can't change our own pressure flow?
Posted: Thu Apr 29, 2010 8:44 am
by roster
mrstevegross wrote: I'm not sure about the law, but I can comment on medical device development. I work for a medical device manufacturer, and we are SUPER CRAZY CAREFUL about our device and its settings. Basically, it's not good enough to just say "buyer beware" on settings. If a setting poses a risk (a "hazard" in industry parlance), we have to mitigate it somehow. The FDA would give us a seriously hard time if we didn't.
So, let's consider the CPAP pressure setting. What is the risk of setting it too high for someone? I'm not a pulmonologist, but I would guess that bad things could happen. How bad? I don't know. But probably bad, anyway. So CPAP manufacturers are being careful and restricting who can change pressure settings. The manufacturers always have to keep the FDA happy. If you really want to change the regulations, write to the FDA.
--Steve
Steve, As you indicate you operate under the heavy hand of the FDA and are wise to take appropriate actions.
For me, I began ignoring the instructions of three sleep doctors, the results of three nights in certified sleep labs and the advice of RTs. I took control of my own therapy and self-titrated to an optimal pressure. As a result, my health today is better than it has been in thirty years.
With a little knowledge and good data capability, self-titrating is less dangerous that using a hair dryer (and has a much bigger payoff).
Yes, these machines and masks should be moved to OTC status.
Re: Which law says we can't change our own pressure flow?
Posted: Thu Apr 29, 2010 9:23 am
by sleep lover
Roster,
I agree with you completely. Any chance I could get you to help me do it? If so, if you'd prefer to go offline and email directly, please do, or I'd be happy to call you. Thanks a lot.
My machine is 6 weeks old, and was introduced onto the market two days before it was delivered - I'm hoping they haven't made it impossible to get in.
thanks,
sleeplover
Re: Which law says we can't change our own pressure flow?
Posted: Thu Apr 29, 2010 9:38 am
by roster
sleep lover wrote:Roster,
I agree with you completely. Any chance I could get you to help me do it? If so, if you'd prefer to go offline and email directly, please do, or I'd be happy to call you. Thanks a lot.
My machine is 6 weeks old, and was introduced onto the market two days before it was delivered - I'm hoping they haven't made it impossible to get in.
thanks,
sleeplover
Start a new post and title it "Newbie Needs Help Self-Titrating". Put in the post the details about your prescription. Look at the document below and tell us anything about your case that is pertinent. I probably will make some customer calls after lunch, but others will give you some good help.
Questions to ask about your PSG and Titration Study
by CPAPtalk member rooster
1. Did I have any central apneas? How many?
2. Were there any comorbidities? What were they?
3. Did I breathe or leak through my mouth? How often? What do you recommend to prevent it?
3. Did I exhibit Positional Sleep Apnea (PSA)? Was my apnea more severe in one sleeping position as compared to others? Is my pressure requirement higher in one position as compared to others? (Often sleep apnea is more severe when sleeping on the back.)
4. Is there anything else unusual about the results?
5. How will I know my therapy is preventing apneas?
6. I am determined to own a data-capable machine and software to monitor apneas, hypopneas and mask leak. This will allow me to call your office with specific questions if I have problems with the therapy. Will you help me with the appropriate prescription?
In addition to the questions:
1. Get a copy of your PSG. It is your legal right to have one.
2. Get a copy of your CPAP prescription.
3. Make sure the prescription calls for a humidifier with the machine.
wiki/index.php/Sleep_study
Re: Which law says we can't change our own pressure flow?
Posted: Fri Apr 30, 2010 6:23 am
by shambharwani
My doctor doesn't believe my OSA has affected my mental abilities to take a decision on what pressures suit me better. In fact she encourages me saying "you are at the receiving end (of the hose) you would know better", thanks to her attitude I sleep well and my AHIs are low (<3-4)