I would not hesitate to adjust my own settings. I am a person who educates myself, and it is useful and valuable to me to be able to do so. I am also fortunate in that my Dr is one of few (according to anecdotal evidence) who actually pays attention to the data on my SD Card (although he does not use the handy online information that my DME has, but I can't see - he requires me to bring the card in) In the case of an engaged Doctor and an engaged patient, you have the best possible scenario. From watching friends and relatives and participating in forums, too often neither Dr or patient is engaged, and treatment suffers. Worst tho, is the patient who wants to engage but has a Dr or DME that fights them.
IMO in a perfect world, all information is available to any involved in treatment who want it - Dr, Patient, DME. Changes are agreed upon by Dr and Patient and recorded by DME. When Doctors refuse to educate themselves, the patient can and should pick up the slack (and find a new dr)
I am not one of those who believes CPAP is riskless. I think that the lower pressure you can be successfully treated on, the better off you are; to do this well you need full participation of all parties, and sharing of data.
Well said Daria. One comment from someone who has been treated for sleep apnea and a professional who educates other professionals.....you are right that CPAP is not without risks and the more complex devices that deliver AutoPAP, BiLevel, ServoVentilation and Assured Volume and other types of ventilation also have risks. The risks are more related to inadequate therapy than mortal danger but in some cases inadequate or excessive therapy can cause dangerous health conditions already present to become worse. It is not a good idea to make changes to therapy without collaboration with those intimately familiar with the individual's health condition(s) and the operating principles of the therapeutic equipment. If that isn't available, changing providers is always an option.
By identifying the need for better education, collaboration and communications we can improve the outcomes for sleep apnea sufferers. I would encourage everyone in the forums to be sure to complete the questionnaires posted here now and those they receive in the future via MyApnea.org . That is how large numbers of people can have a voice to improve their care and outcomes...............including better collaboration and communication with the healthcare community and more importantly HOW to accomplish it..
Don't misunderstand my stance... If I were to have an educated disagreement with my medical practitioner, I most certainly would want to have the capability to take it into my own hands (and I do have that). I think it is important to understand that we are all individuals and the best therapy will be a tailored therapy - not too much and not too little. An educated patient, or a really attentive practitioner (who has that!) is the only way to achieve this.
It is best for a good, interested medical professional to collaborate with an engaged educated patient. Second best is for the patient to be engaged and educated on her own and self manage. Second best may be best in the case of lack of good doctors whether the reason for the lack is location or money. Medical practitioners are there in this case to educate the patient - but I see very little of this.
Agree. I think we are both saying the same thing. I was just saying part of being an educated patient is to clearly understand the risks and that is hard to do when the whole reason for having to self adjust is that some medical professionals are not providing the guidance and education needed.
One of the goals of this research network is to create a pool of information to allow researchers to identify better individualized protocols for diagnosis and treatment of sleep apnea and therefor achieve better outcomes. The more people in the pool the stronger the evidence of what is needed.
Just to expand the discussion.... Do you think it is appropriate (or ethical) for you in participating in a sleep apnea related forum to teach or assist another user (who you only know via the forum) on how to access the clinical menu setting to change their pressure?
One question is... is self-titration ok.... The deeper question might be... Is facilitating self-titration in others ok?
I think that it is. I tend to come down on the side of autonomy and don't enjoy the idea of a "nanny state"
While I do think that some of the advisers are not as cognizant of the risks as they might be, I have not found the medical community to be any better, and it is the rare professional who is actually well versed enough or has the time to go beyond the standard protocols and tailor a treatment plan for an individual. Ultimately it is up to the individual to choose what advice to select, and as long as a lay adviser is not taking money for it (and therefore has nothing to "sell") I have no issue with ordinary self educated folk advising others. I do support rx for the equipment for 2 main reasons. 1) I think health insurance should cover the cost and 2) I think the quality of the products needs to be regulated.
The reality is that you (with the assistance of your insurer or Medicare in many cases) have paid for this machine. In my opinion, you have the right to know all the intricacies of how to operate that machine. In addition, even if you don't adjust pressures, there are a lot of basic things that you can, as the owner of the machine, may need to adjust such as the time (daylight savings), which can only be accessed in the clinical settings area.
Convenience (or necessity depending on your situation) is also a factor. I live in a Medicare Competitive bid area. Access to the DME is by appointment only. I live 45 minutes away. By not being able to access the machine, I have to make 2 trips: one to the sleep doctor and then one to the DME to make changes to my machine. The days of the DME coming to your home are pretty much over in my area unless your doctor has an order in that you are homebound. My BIL lives 45 MILES from the nearest DME and that is the VA. My sister would have to drive 100 miles to get to a Medicare approved DME. These are smart people, perfectly capable of reading a screen and adjusting things themselves.
I do agree though, working with your doctor is vital to rule out other issues.
If you were diabetic, would you only have your blood sugar tested once a year by a professional, or would you monitor and make adjustments as needed? If you are lucky, you will meet your assigned specialist and he/she will become someone you know how to reach via email. In reality, the only time you will have your card "read" by someone is a technician when and if you make an appointment to try on a new mask once a year. If I didn't check my numbers every morning, I wouldn't know that my auto titrate pressure stays steady between 10.9 and 11.4 and I can guess my AHI by how bad I feel in the morning. Would I rather be in the dark? No.
Right you are. Every insulin dependent diabetic I have ever known is encouraged strongly by the medical community to test and tailor the insulin dose to the numbers and situation. Their lives depend on it, since blood sugar needs to be kept within a certain range in order to support life. With CPAP it is compliance that is on the line. The risks of over-treatment exist, but the risks of no treatment or under treatment are greater. If a person can manage to find a comfortable therapy and can see the difference it makes, I think that the likelihood of compliance, AND an appropriate treatment level increases exponentially. I have run into several people since I became a hosehead that were struggling with uneducated treatment that was completely ineffective. Leaving it up to someone else - dr, dme or whatever is more likely to result in poor treatment from what I have seen. My son just began treatment for very severe apnea - AHI > 100. The first night he may well have hung it up if I had not been there to help him increase his pressure from a suffocating (for him) panic inducing 7 to a level where he felt comfortable and able to withstand the treatment. Fortunately, he has a doctor who is happy to have an educated and engaged patient. She agreed with all of the changes we made. It is a very good point though, that he did keep his doctor informed, and is under advisement for what she considers OK.