April 14, 2013

Sleep Apnea - Are You a Prepared Patient?

What do you know about your sleep apnea? Do you know your equipment? Do you know what your options are – for equipment, equipment replacement, parts replacement, and other supplies? I am sorry to report that many people do not and some do not care. Others hate the equipment and still others let vanity rule. There are some things about my equipment that I do not like, but I still use the equipment as I feel better using it and know what will happen if I don't.

You will have to excuse me for a little ranting, but I have a friend that only wears his mask for short periods each night and then takes it off. Why does he do this? I don't know as I have helped him adjust the snugness and even had him order the nasal mask liners from this source, but still he would not wear it throughout the night. With the nasal mask liners, he was able to loosen the tension on the mask straps even more. Finally, I started kidding him that it was vanity that caused him to remove the mask. He questioned why I would say this. I said that he was so self-conscious about the lines the straps could cause that he did not want them when he woke in the morning.

He finally admitted that this bothered him and I won't go into some of the things I said to him, but if we were good friends, he would have told me to get lost and never see him again. We did settle on a weekend and I worked with his significant other (SO) to adjust the straps and he did give it an honest try. Even his SO said that he did not have lines an hour after he awoke. Then the following weekend to prove this, I took away his nasal mask liners and had him tighten the straps to prevent air leaks. It took almost three hours for the mask lines to go away. He was finally convinced and now he wears his mask all night.

Yes, there are many choices that are available to people with obstructive sleep apnea. One choice that you do not have is walking into a medical supply store and choosing a piece of equipment, a mask, and other supplies, paying for them, and walking out with them. You must have a prescription, obtain equipment that your insurance will cover, and have counseling by your sleep doctor or a sleep therapist. Even if you can afford to pay for the equipment, the law does not allow them to sell you the equipment without a prescription.

Equipment choice may be more flexible as the doctor can influence the choice and sometimes force the insurance to cover equipment they do not want to, but this still may be a point of contention. So be careful when writers claim that you can make the choice.

This article makes a lot of sense and does cover many of the facts that need to be covered. I do appreciate the fact that she mentions mild, moderate, and severe sleep apnea. I even needed to laugh at her analysis leading up to her question – are you a dead man walking. Yes, sleep apnea of any type can cause you to die if not properly managed.

The sleep study is the first step that needs to be accomplished. This will determine your apnea hypopnea index (AHI). This is then used for the type of machine the doctor may recommend, the pressure setting(s), and the type of sleep apnea you are diagnosed as having. The next piece of vital information is your oxygen level according the author and in checking with my sleep doctor, it is not a measure they do other than as part of the sleep lab at the beginning and end of the lab experience. This is something some sleep labs did not measure until recently. High blood pressure in connection with low oxygen levels puts us at risk for a heart attack or stroke.

In summary, to become a prepared patient, your objectives should be:
  1. Take responsibility and lead your healthcare team.
  2. Know your AHI and oxygen levels.
  3. Understand the anatomical features that cause your OSA .
  4. Know your equipment choices, machine pressure and take responsibility to learn patient controlled comfort and adjustment features.
  5. Report all problems and challenges to your healthcare team as quickly as possible for resolution.
  6. Maintain due diligence by scheduling routine follow up visits with your sleep doctor.

I would add that you need to forget about vanity and do some testing to see how long the lines from the straps actually last before giving up. This is when number 5 above should be used and discussed with your sleep team.

I admit I don't remember the exact number for my AHI, but in both sleep studies, it was over 100 apneas per hour. I have attended several of the maintenance sessions and not had any problems. They have called me in several times to download the data from the disk, but after doing it once or twice, the insurance company quit complaining and asking for more. My sleep doctor knows that I use my machine and asks how I keep it so clean. I say that I use only distilled water and clean the filter monthly or more often if needed. I use a clean cloth to wipe the outside of the machine.

My wife complains that I don't clean the nasal mask often enough, but with the nasal mask liners, they do a pretty good job of keeping it clean, so I don't need to clean it that often. Apparently, I take better care of my equipment than most do. The sleep specialist is always surprised that I don't need replacement parts at the frequency of many people. I am now happy that I do take care of my equipment as Medicare is monitoring how often people need to replace equipment parts and has set some limits.  For most supplies, it used to be quarterly, but now much of it is biannually, except for some parts.

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