We all have ideas. We are in general an older population. We know that while all ideas are not good ideas that the people suffering the ineffectiveness of any given system will have ideas to improve it. This forum is a direct result of that need.
My personal observation is that the Respiratory Therapist should be the interactive individual that we meet with in our treatment plan as it rolls out. The sleep doctors role should be to determine the patients plan according to their presentation and their ongoing treatment by other doctors as their case may be.
The trained experienced respiratory therapist can assist the patient with adjustments and qualified monitoring and record keeping while keeping the patients doctors in the treatment loop. The respiratory therapy field can and should fully expand to provide reasonable cost effective fully interactive treatment for us.
In this way we can best ride the wave of this great new technology and therapy. Having the insurance companies dictate our care is not the best plan. The medical field itself needs design a better way by listening to us and realize that there are a few glaring defects in the system and address them to best benefit us.
The medical field in general needs to understand Sleep apnea better. The dangers of even long term mild sleep apnea and respond accordingly which by and large they do not. Their first though is throw a pill at the problem or a surgery.
DMES should be required to keep a decent representative line of masks to try and sleep labs should be required to keep a decent selection of masks to do titration with. I personally went one night and had to go back a 2nd because they had locked the mask that would work for me downstairs and couldnt get to it. And only had three others in one size. The wrong size.
Hiding simple things like how to change pressures, comforts settings, ever prescribing a straight cpap with apap is available and can be run in either mode and is more effective. And flat out lieing to patients that its going to mess up their insurance if they change anything on their own machine etc.
Instead of helping new patients understand what is going on the drive is to keep them as much in the dark treating a pap machine as some sort of magical mysterious box of disasters unless a master wizard controls it. Hence you have folks that dont know their AHI what their pressure is, have the faintest idea what to do when they have a problem etc etc.
I think its a philosophical issue with the mainstream system of medicine. This system believes in achieving a "minimal feasible" state for patients. It does not aim or attempt to achieve the "optimal" state.
xPAP comes in the realm of when you try to go from "minimal feasible" state (AKA you are alive) towards optimality (you are feeling better, rested, not getting irritated etc. etc.). So the current system of mainstream medicine has no interest in this.
Once they got you titrated on a maximum fixed CPAP pressure (which by all sleep labs' protocols is what they get by getting you in REM sleep in supine position), they have no incentive in tweaking anything to get you to "optimal". Same can be seen everywhere in medicine. They try to give you meds to keep things in "check", never to cure you of the underlying condition.
Although to be fair, in an emergency or any kind of urgent situation, this system is the best system out there.
So, I don't think this system will be funded by any party involved in the medical system today.
Started APAP 4-20, Closed range to 7.5-14, then straight 8.0 w/ Aflex 3
RDI always below 1. But sleep much much better at straight pressure.
Started on F10, Tried Quattro Air successfully. Finally settled on P10.
I don't think there is an optimal treatment model because every patient is different and every sleep center/DME/therapist/physician is different. I'm an engineer and an information junkie. I quickly figured out the ins & outs of a ResMed S9 AutoSet machine, the ResScan software, and was off on my own working out the optimal mask and settings where I kept my nurse-practitioner and DME in the loop as I was changing things. The machine and the nasal pillow mask I'm using also work very well and my typical AHI is well less than 1 per hour. I suspect that only a very small fraction of patients fall into my category and that they're over-represented on this message board. I imagine most patients passively expect the sleep center and DME to work it out for them. I imagine many patients have big problems with masks and adapting to the machine and that many never experience particularly good results.
The other thing I realize is that a CPAP machine is a Band Aid for my underlying problem. I've been addressing diet, exercise, and weight loss that are all combining to make my Apnea problem worse. My long-term goal is to wean myself off the machine though I don't know if that will ever be possible. That's very much in conflict with a for-profit sleep center and DME who want me married to a CPAP machine forever.
The fall back position of well you are in compliance you are getting 4 hours of sleep. That is enough sleep to be alive on and if that is all your getting well its all good. For me that was not enough to be competitive at my job. By by thirty year career. Mayhaps oxygen is up to 90% hey you got it going on. Well for some that is enough. For me that is a cognitive function disaster still. Thes things are like an above poster says, minimums.
The dme is helpful only to their legal requirements. They don't go beyond that and why would they take on liability?
I do not find the sleep techs to be medically knowledgeable enough or credentialed enough to truly be the point of contact after the doctor. The doctor is not a sleep tech and while knowledgeable they are not technicians and once they have drawn their conclusions and signed off on the prescription they are moving on to the next paying customer. The minutae of patient comfort and possible underlying conditions that have not been identified well that is out of the dollar zone in many ways.
The scramble for self knowledge is vital if the treatment is not getting someone to their personal life need requirements. This sight is a huge resource. Still I would like to have a medical point of contact with sleep technician skills. Someone that can and will tweak a machine and not charge a twenty dollars a minute to do so. Someone that can and will make notes on progress and observe the medical aspects of the patients situation.
I find the present system guilty in the court of Goodonya. It is failing to meet medical goals. Here we have cool new technology coming out in a rousing show of free market enterprise to meet our needs and the medical system cannot pull its head out and train up and give us a cost effective means to properly make use of it.
This board is full of people who want the best possible treatment, and that is very nice to see. We all strive for the maximum in our treatments and the best possible care for ourselves. Overlooked here though is the simple fact that we are not representative of the public by and large. We are most likely if not most certainly in the minority. Though we want to blame the entire failure of the process on the medical community I think that "the patients" in large part are the reason the medical community acts as it does.
If you take a look at this board overall you see quite a lot of people that are striving for their best possible outcome, they find this board, and they get the help they need I'd say for the most part. But how many of us are there here? What percentage of people actually diagnosed find their way here? I think overall we are a very very small and insignificant portion of the overall diagnosed patients and so our perspectives are warped by our realities causing us not to see the whole picture or the large majority of patients diagnosed.
Even here on this board we still do get a good amount of people that come for help and are not willing to put the time in to be helped. Then we get people who come here just for the bare minimum of help and don't want to know anything more than that they are compliant. If you look on board right now there is a post that indicates the real data is best left to the doctors, I just want to know I'm "ok" and "compliant" the rest is not really my concern. Others come here and hear something they don't like and would rather quit than do anything to make their lives better.
I believe we are the minority, the majority on the other hand doesn't listen to their doctors, won't follow their instructions, and heaven forbid if they knew they could adjust the machines...... I mean let's face it most people out there can barely turn the TV on and off let alone program the tivo. And far too many don't want to even bother let alone do as they are told. The dme's I bet are hard pressed to get people just to be compliant, let alone get the best possible care.
I just saw this first hand with the Type II diabetes care, the very first thing they do is put people on meds. You ask about diet change first they say, no you need the meds it can't be done with diet. Why not you ask, and they tell you 90% of the people using diet alone fail. Why? Because they can't follow the diet or they won't follow it. So meds for everyone just because that is the protocol that fails the least. They are in a position where they must do what is best for the vast majority, not the 1%ers that want to actually listen and do the best they can and get the best care.
Two years ago I saw it with a very good fiend who had a heart attack, was the picture of health, had a heart attack, they attribute it to the only bad thing he did which was smoke about a pack every 2 days. Perfect health, etc., just dropped from a heart attack. I got him to the hospital just in time for him to code and them to save his life. About a month later I get a call from his Dr who was concerned about him not taking the patch or pills or whatever they gave him to quit smoking. I said he hasn't smoked since the day he was in the hospital with the heart attack. The Dr tells me that's impossible, no one can just quit, he needs to take the drugs. I tell him I quit cold turkey smoked 5 packs a day never took a drug, and I know for a fact he hasn't smoked since the day he was in the hospital because I'm with him virtually every day at work. Took me 10+ minutes to convince him he hasn't been smoking, and I still don't think they believed me. turns out they called while he was there because they wouldn't believe him either. But this is the world at large that we live in, people can't follow the simplest of directions and so we have to make everything as idiot proof as possible, and I believe that is where the problem lies.
If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
12-18-2014, 11:46 AM
(This post was last modified: 12-18-2014, 11:50 AM by DariaVader.)
(12-18-2014, 10:22 AM)GeoffD Wrote: I don't think there is an optimal treatment model because every patient is different and every sleep center/DME/therapist/physician is different. I'm an engineer and an information junkie. I quickly figured out the ins & outs of a ResMed S9 AutoSet machine, the ResScan software, and was off on my own working out the optimal mask and settings where I kept my nurse-practitioner and DME in the loop as I was changing things. The machine and the nasal pillow mask I'm using also work very well and my typical AHI is well less than 1 per hour. I suspect that only a very small fraction of patients fall into my category and that they're over-represented on this message board. I imagine most patients passively expect the sleep center and DME to work it out for them. I imagine many patients have big problems with masks and adapting to the machine and that many never experience particularly good results.
Exactly so. A good contrast is myself and my father. Both of us have apnea. I am lucky in that I got sent to a sleep doc who is himself an apnea patient, and also technologically bent. In fact, in my first visit, he asked me if I had anything against cpap to which I replied, no religion on that subject, but my dad throws his across the room as soon as he falls asleep and has quit trying to use it. (my dad is the epitome of the reason ins companies dont like to pay without some amount of compliance data...) my doc finds out my dad has kaiser, pulls out his phone and within 2 min has my dad set to get an appt with a kaiser RT that hooked him up with a new apap and a p10 airfit. Now he wears it.
I am all over the settings, figuring out whats helping and whats not, all sorts of analysis whether useful or not, because that is how I am - but my father, without someone to look after him, needs to be coached through the system, and needs to be told "we can't help you if you don't meet these minimum requirements" He needs a more aggressive maintenance plan with an RT to make sure he is getting what he needs. Kaiser actually excels at this sort of thing once they have a plan formulated, and now they do, for Sleep Apnea. It may need tweaking, but it's better than it was in the early 2000s when my dad first got his cpap. He has no clue what his AHI is from testing, or from treatment, will not look at the data off his card, although he said I am welcome to, etc etc.
(12-18-2014, 10:22 AM)GeoffD Wrote: My long-term goal is to wean myself off the machine though I don't know if that will ever be possible. That's very much in conflict with a for-profit sleep center and DME who want me married to a CPAP machine forever.
my goal, too! healed of snoring once before - by losing appropriate amount of weight, BMI was within prescribed. Since then I gained the weight, and re-acquired snoring. Only recently diagnosed, I was hiding from Doc for at least 5 years [snoring for past 10 yrs].
Note there is a very small minority that make long term healthy changes. I suspect that is also a part of the Doc and Sleep Center emphasis on getting used to a lifetime of PAP'n.
I'll be one of the 1%'ers, and you'll join me.
QAL is "sleeping to live", not "living to sleep"!
[member of the PICK BOTH Club - some people have to choose between breathing and sleeping, but I pick both.]
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
12-18-2014, 12:41 PM
(This post was last modified: 12-18-2014, 12:43 PM by PsychoMike.)
I agree....right now, mainstream medicine is generally in a do what *has* to be done, not do what is best mindset. They also need a serious kick in the shorts about SDB / OSA / UARS because the basic understanding of these conditions is sorely lacking.
DME's (and especially those "in network" for US insurance companies) are profit motivated, pure and simple. I think RT's need a code of ethics that includes doing what is best for their patients, not what is most profitable for their employer.
In my case, my previous DME was concerned with compliance (4 hrs / night) and that my AHI was <5...that was it. The RT did a cursory fit of what the DME carried for a mask and did check my actual machine pressure once....but otherwise is was cookie cutter info that did nothing for me.
My UARS sleep disruptions correlate to my AHI at a factor of ~9:1. When I came in after my first 2 weeks on therapy, my AHI was 1.5 and I was compliant. My RT didn't take the time to understand that my sleep disruption was still in the neighborhood of 13.5 and that my leak rate was hovering right around the edge of the acceptable range (typically around the 20 L/m). I was compliant and my AHI was less than the magic "5"...good enough for them and my insurance.
Through places like this, I've been able to do what is best for me...the heck with "good enough." My AHI is typically sub 0.1 now (so sleep disruption of 0.6-0.7), I have options for masks that give me average leaks near 0 L/m and I feel a heck of a lot better. When I changed DME's, I told my new RT that I will either be his best or worst patient because I am actively involved in getting to the best therapy for me. Best in that I am informed and active in the process...worst as I will call him on any BS he wants to shovel and if something doesn't work, he'll hear about it. With those parameters in place, so far it has been a great relationship.
Overall, the current medical establishment generally fails OSA / SDB / UARS patients once they get past the diagnosis stage. Without some fundamental shift in how they look at this family of conditions, I don't see the situation changing anytime soon.
If you're starting out in your treatment, you're in the right sort of place. Don't expect the RT or DME to do what is best for you....educate yourself and be prepared to be active and proactive in your treatment. It is YOUR health and you have the right to be informed, ask questions and to get the best treatment you can....even if that means doing what the DME won't: fine tuning beyond the compliant and AHI <5 stage.