Read what Dr. Barry Krakow, author of Sound Sleep, Sound Mind: 7 Keys to Sleeping through the Night, has to say about my new book, Totally CPAP. This is Part 5 of a multi-part in-depth, critical review. This is taken from his blog. Read Part 1, Part 2 Part 3 and Part 4.
In Chapter 7, Dr. Park adds “More Helpful CPAP Tips.” He covers several key factors such as cleaning your PAP equipment, travel tips, battery back-ups, situating your device in the bedroom, and how to manage your PAP device in the hospital should you be undergoing surgery. These were covered so well, I have no further comments. In the second half of the chapter, Dr. Park delves into other clinically relevant situations and factors, which we will discuss here, using the same format of highlighting some of his key pearls and occasionally providing our commentary.
1. Re-check or re-calibrate PAP pressures
This area is of great interest, because it raises the question about what to do when the response is changing. Is the machine defective and needing re-calibration to confirm pressure settings are accurate and doing the job they are supposed to do? Or, has something changed necessitating a more thorough analysis with another night in the sleep lab? As you know from past posts, our sentiments lies with returning the patient to the sleep lab, because pressure settings frequently change in most patients, despite the conventional wisdom followed by many sleep specialists and proffered by many insurers that claim settings rarely change and one titration night in the lab is all that’s ever needed. Dr. Park mentions how data downloads with more modern equipment can provide some sense about whether things are running smoothly, but in our experience we find the downloads often provide qualitative information and less commonly offer sufficient information to guide a manual adjustment of settings. No matter how expensive and how inconvenient, the experience of the sleep lab is a much more reliable way to address these problems. Keep in mind, however, that you will find yourself in a struggle either with your own sleep doctor or your insurance carrier, because they often do not appreciate the concept of a dose-response relationship between your pressure settings and your outcomes changing over time. I cannot repeat this enough times: if your response is waning, as Dr. Park declares, it is a big mistake not to return to the sleep center for additional care and nine times out of ten you want to be tested again in the sleep lab.
2. Patients changing their own pressures
This area is another key element in extending care back into the patient’s domain. I believe the vast majority of patients must be trained to adjust their own pressure settings, if for no other reason than so many sleep doctors are stuck in the conventional wisdom that pressure settings are a static process. In reality, pressure settings should be viewed dynamically. I have noticed this issue first-hand in my own use of ASV and ABPAP over the years. There are times where I am literally adjusting settings daily, weekly or monthly to accommodate some change I am noticing in outcomes. There is no reason why patients could not be instructed in this approach to care, and given the resistance to testing in the sleep lab by so many sleep doctors and insurers, this self-care model can also work very well to further enhance the relationships between patients and their DME personnel. The model of health care for the future is clearly heading toward patient-centric and away from doctor or medical system centric. I appreciate that some patients cannot learn to approach their care in this manner, but arguably anywhere from 30 to 60% of PAP users could learn this approach, and it’s just common sense that healthcare systems should be implemented to encourage patients to understand how to gather subjective data about themselves to then make informed decisions about changing the objective pressure settings on their machines.
3. CPAP use during naps?
I agree with Dr. Parks approach here and simply want to reiterate that if you nap for longer than 30 minutes, it is probably worth considering using your PAP especially when you have known cardiac risk factors or frank heart disease. One other point worth stating is that finding yourself napping on a regular basis should raise red flags about whether you are receiving optimal results from your PAP machine.
4. Allergies and PAP use
Dr. Park makes the excellent point that of course you can use your device when you are congested, but you probably won’t get the same results. More importantly, he points out the necessity for paying close attention to your congestion issues and resolving them prophylactically so you can maintain optimal results. At our center, we call this a “zero tolerance policy” and we consistently educate our patients on the need for aggressive maintenance of nasal airway patency.
5. Sleep position while using PAP
Dr. Park’s specific question is whether you can sleep on your side to which he responds in the affirmative. I would like to add that any sleep position works with PAP, but it may take periods of trial and error to find out how to make things work effectively. For some reason, many OSA/UARS patients presume PAP therapy only works properly when you sleep on your back. The irony, of course, is that some patients suffer from airway anatomy obstructions or neck problems either of which makes it impossible to use PAP while sleeping on your back. I cannot even count the number of times I’ve conversed with patients who were surprised when informed they could use PAP on their back, their side, or even on the stomach (prone position). Personally, I worked through these scenarios and found sleeping prone is my best position, and it usually only requires a few extra fairly flat pillows to work with to create the proper effect. At one time, I used a very flat pillow under my chest, but now my most effective system involves one very flat pillow to rest my head upon and then a second flat pillow tucked slightly under the side of the first pillow to raise its angle. This step improves the comfort effects by slightly lifting the back portion of my head so it is higher than my chin, all of which leads to a pleasant feeling of my face sinking into my mask. Although there are special pillows advertised to assist in solving some of these problems, I am persuaded a little ingenuity on the patient’s part can yield excellent results. Nonetheless, many patients benefit from these special CPAP pillows to aid their efforts to sleep on their sides and off their backs.
6. Beards and CPAP
As Dr. Park points out the first step is to use nasal pillows to avoid any problems with facial hair. However, if someone sports a beard, there is a higher probability his chin might be small or recessed, which worsens risks for mouth breathing. So, the number of patients with a beard who can successfully use nasal pillows is probably smaller than the proportion who ultimately need full face masks or chinstraps or both. Then again, for some, using a chinstrap with a nasal pillow might solve these problems. Although we have no experience with beard sealant ointments, we are learning patients have found them most useful in mashing down the beard in such a way the full face mask seals fairly well.
7. Whom do you call for CPAP supplies?
While this question should be a minor one, it actually turns out to be a common source of snafus, thanks to the way the government has interfered with selling CPAP supplies. Because the main players in sleep medicine are the sleep centers and their professional staff combined with the DME companies and their staff, we often find that poor communication occurs between the two groups. The reason the federal government is partially to blame is their creation of rules and regulations not only making it difficult for sleep centers to operate as DMEs, but even more problematically they create so many rules and regulations for DMEs to follow the two groups (DMEs and sleep centers) often find themselves in conflict, because certain information was not passed correctly from one entity to another. Take the example of Medicare patients: if a primary care physician sends a referral to the sleep center for a specific patient, the DME company may not accept it if it does not include the phrases, “referred for sleep testing” or “referred for OSA evaluation” or both. If it states, “referred for sleep evaluation” it might be rejected. We have experienced dozens of instances where a DME returned the referral as incomplete and refused to send in the fax prescription for the PAP device to receive Medicare authorization. This administrative nonsense delays care and occurs on a daily basis, and some of the idiosyncrasies take up more than an hour of staff time for just a single patient. Above all, it is imperative that a patient make a solid connection with staff at the DME to facilitate communication about receiving essential supplies (masks, tubes, headgear, etc.). But, don’t be surprised when the DME informs you some piece of data or a medical note is missing from the sleep center and is holding up delivery of your equipment.
8. Life span of a CPAP device
Most devices last several years. It is not uncommon to meet patients using a device for 5 to 10 years. But here’s a pearl about switching to different devices that often is not appreciated by patients, probably because the information is not passed onto them by their sleep doctors or DMEs. At any point if you are deemed a CPAP failure case, regardless of how short or long you have owned the device, you can switch to another more advanced device, and the insurers will cover the new device. In other words, your efforts to gain a more advanced device will not be rejected if CPAP failure is demonstrated. Most commonly, if you fail CPAP or APAP, you can rapidly qualify for BPAP or ABPAP. And, if you fail these bilevel devices due to central apneas, then you can qualify for ASV modes. This info is critically important for patients to know about, because many sleep centers don’t seem to realize they can move their patients onto a more advanced PAP device and move them rapidly when they are not responding well to CPAP or APAP. There is no time interval that states you must use CPAP for 3 months or 6 months and so on to be declared a PAP failure case. Even in the sleep lab, if you cannot tolerate CPAP, then technically you have failed CPAP and can be switched to BPAP for the remainder of the night, after which you can be prescribed BPAP immediately without having to take a CPAP device home and fail it again.
10. Summary Points
The main takeaway from the anecdotes Dr. Park mentions in this section is that patients who are diligent and resourceful are more likely to become successful users. Without Dr. Park saying so, I would point to the opposite conclusion in which patients who have a more dependent style of coping with life in general and who lose their momentum in the face of just the slightest roadblock often fail to achieve optimal results with PAP. In fact, these are the patients who give up entirely, return their devices or simply give the PAP machine a comfortable burial site in their closets. This problem is ubiquitous in sleep medicine, and the insurers have caught on, because they know that unless someone makes a conscientious effort to tie up all the loose ends, CPAP failure is looming close at hand. From their point of view, that is when finances are a primary focus, it makes good business sense not to pay for a device when someone won’t or can’t use it. And, all these points go back to Dr. Park’s initial imperative: you really must find a way to want to use PAP and once you find the way, you need to maintain your willpower in maintaining your use. My only caveat in all these philosophical ruminations about PAP is that lots of folks, who might be categorized as in a gray zone halfway been super conscientious and highly dependent personalities, are among the many that if given the chance to use advanced PAP would most assuredly find the way and the will to move forward to stay the course.