Gavino V. Wrote:Nothing like sweeping statements! I am a person for whom EVERYTHING you
stated is patently UNTRUE.
And I am FAR from alone, or there wouldn't even be this topic, nor
would it last so long.
This is the kind of haughty, arrogant operating mode that we poor unwashed
patients have suffered from and DESPISE.
Robb W. Wrote:Gavino. The only thing that I get is that it is clear that you are beyond convincing of any positive situation. You may not be alone, but you are not among the majority. I have too much of a passion for helping people who are willing to accept that theirs is not the only side of the story. I have not seen your studies nor can I make any determination if the fault solely lies with the labs that you are speaking out against.
Terry is correct about his assessment of autopap. I have not been speaking about my own personal feelings, but from witnessed experience and also my own experience with CPAP. I am telling you that we have one side of your story. We do not have the story from the lab, which would paint the complete picture.
I am not going to dignify your tirades any further. The only thing you are doing is making a fool of yourself.
I am one of those poor unwashed patients as well. I am not coming to you with arrogance, but with solid fact.
I feel very comfortable telling you, you are wrong. This topic is based on a question. Not intended to bash labs or DMEs or those that might have been trying all that they could to help you.
As Abraham Lincoln said..."You can fool some of the people all of the time, and all of the people some of the time, but you can not fool all of the people all of the time."
Don't try to push your negativity here. We all understand that you had a bad experience. We are not fools. Thou protest too much.
Gavino V. Wrote:Ok, what is interesting to me is how incapable the professionals in this thread are of a) sticking to the topic (clinicians are not on trial here - the topic is what aren't more autopaps prescribed; not how good/bad/indifferent the bedside manner of the physician was, how valid the results of titration are, etc.); an b) looking in the mirror, as it were, and hearing what patients ACTUALLY SAY.
First, to Meaghan - not one word in ANY of my "screeds" (my word) do I question the clinicians! Not one. And to relegate what I say to some form of exceptional experience papers over the real issue at hand here. Why aren't more autopaps prescribed.
Last I looked, no clinician, lab tech, physician's assistant or supplier of equipment can write a script. Period. The script can only be written by a physician.
In my case, involving a specialist - a pulmonologist, not an internist, GP or family doctor - a script was written for a Bi-PAP. The pulmonologist was all ready to prescribe a CPAP for me when I somewhat innocently brought up the difficulty - which I now consider to be largely, for lack of a better term, psychological (in that I believe that over a relatively short period of time I would have gotten used to it) - I had exhaling. I had brought this up in the lab, btw. The lab did not tell me that such things as Bi-PAPs existed. Honestly, in a strict sense, it was not their role to do so, altho it might have been helpful from the standpoint of educating me. Once I brought up the difficulty, only then did the pulmonologist inform me that such a device existed.
Now, what was I supposed to do? Decide to go online - between the sleep study itself and the consultation with the pulmonologist - and research all the various kinds of equipment available, then challenge the specialist who in fact has studied sleep disorders and presents himself as such? I had gotten terrible "service" from his office staff, yes, but that can happen with any MD of any stripe. As I clearly said, I liked this pulmonologist, he came highly recommended, and did not have a haughty bedside manner. But, in the cold light of day, he did not do me a service by informing me what my options were.
Neither did the company that supplied the equipment. I was not given a selection of models, was not informed about the ability to record or transmit data to the physician so that my progress or lack thereof could be measured. I believe the script called out a Bi-PAP and the physician and his office had not given me a choice of suppliers. I presume I could have, at that point, decided on my own that I should spend the time - at least online - to vet out suppliers, and potentially, countermand the advice of my pulmonologist by vetoing his recommendation and instead use some other supplier? Based on what? BBB? For giggles, since someone in this thread brought that up, I did just that in the last few days here - I went to the BBB and looked up the supply company: NO PROBLEMS LISTED.
Over the next 2 years I used my Bi-PAP religiously. It helped, but I was not experiencing the life-altering changes that I read - ONLINE. It didn't even measure up to the experience of my neighbor, whose improvement was marked, but also not life altering. I would have settled for marked improvement; shoot, I would have settled for the improvement I got. But after a couple of years, it seemed to me that the pressure on my unit could be improved. I wanted to see if I could have an adjustment.
So, in all my "negativity" (do you see yet how absolutely condescending and arrogant that is??), I scheduled another appointment with my MD to discuss the problem. His solution? Back to the lab...
The next sleep study was scheduled for a mere 2 months hence, not the 6 months of the first time (due solely to the pulmonologist's staff, NOT the lab), so I have a while to think about things.
(to be continued)
Gavino V. Wrote:Why would I need to go back to the lab to try out a small adjustment for the equipment? I understood that allowing an relatively uninformed patient to fiddle with the settings. But did that mean that every time I'd need an adjustment I'd have to traipse back into the sleep center?
Believe it or not, THAT'S WHAT I BELIEVED. In fact, that's what the pulmonologist and his staff and the supply company led me to believe. I resigned myself to it.
After a night of particular frustration, I spoke with my wife, in the middle of the night, about what I saw as my plight. It was SHE who recommended I seek out a second opinion. As it turns out, the father of one of my son's friends was a pulmonologist. I knew him - we had talked at lenght about sports - but didn't realize what his profession was.
So I called him. Got an appointment in a week. Had a "heart to heart". He started out by asking me if I had brought in my "chip". Chip? "Oh, so you have old equipment. How long did you say you've had your Bi-PAP?" When I told him two years, he was puzzled. "They should have given you more modern equipment. Who is your support company?" When I told him, he shook his head. "We stopped using them. They're no good." [Remember, their BBB profile is clean. Why? I don't know. But perhaps other disgruntled "consumers" like me did not think the BBB was the proper forum to discuss what appear to be systemic issues. And I claim, my issue is systemic.]
Whatever, the task at hand was to help me out, not rehash the past. He said the first thing we'd do is see if my insurance company would "pay" for a new Bi-PAP, one that recorded data. With the data from that device - adjusted to the settings of my current unit - he'd be able to see what adjustments might be made, if any. (We spoke at length about leakage, masks, etc.)
The insurance company shot me down - I would not be able to get new equipment for another 3 years. (I will revisit the insurance company later...) He then got the idea to see if he could get a "loaner" from the hospital, merely to record data and avoid a costly (even if I personally was not bearing the bulk of the cost), unnecessary (at this stage, anyway) trip back to the sleep center. No go.
So he said to me, I'm afraid we have no other alternatives but the sleep center.
Now, my unit at that time cast $1750, of which, as was pointed out here by someone else, the insurance company paid only $500. So the unit had cost me $1250. I thought, is improved sleep worth $1250 more to me? Heck yeah - in fact, twice that much. I was prepared to pay $2500 out of my own hide, just to be able to record data. (I know everyone cannot afford that; I'll revisit that later as well.) It's not that I hated the sleep center (altho, as someone else in this thread pointed out, the beds were unusually hard), it's just that it was truly an elephant gun approach. All the sleep study can do is give the pulmonologist data, at least at where I was at that point. At the very least, we'd get the first level of data; if we needed more, THEN I would go to the center.
And it just didn't make sense to me that every time I needed the slightest adjustment I'd have to pack up and visit my local sleep center...
My new pulmonologist said to me, well, you can buy your own, but don't you need the support company? I thought about it. They had seen me once, sent me years worth of supplies (hoses, nose pillows, straps, etc.) at what I now know to be top dollar, but when I asked them to make an adjustment to the equipment, they refused - that was a matter for my pulmonologist. When I inquired about getting new equipment - with the same settings but chip-capable - they refused, stating they would need a new Rx. So when my pulomonologist asked if I needed the support company, I thought about it and said, absolutely not.
I went online. (again, gracious readers, to be continued...)
Meaghan M. Wrote:Gavino, since you obviously don't want the opinions of any of the technicians, therapist or other PAP users who have had positive experiences with therapy, why don't you go call your PCP, pulmonologist or Sleep physician and ask them why they don't order more auto CPAP devices? At the end of the day you are correct the physician's are who prescribe the treatment modalities not the cllinicians or DME companies. So you should go to the physician groups and ask them. Since we are unable to satisfy your questions. Oh and just so you know at our sleep lab/ sleep clinic we do order auto devices on all our patients, but that doesn't mean we place them in the auto mode. We place our patients on auto devices, but put them on a set pressure. If the individuals has problems then we have a device that has capabilities for the physician and clinicians to work with. This is our lab/clinics stance, but not all patient's are suitable for auto devices and at the end of the day it is what the physician orders that everyone must comply with and you as a patient have the right to choose which home medical equipment company you would like to use and which physician you would like to use.
Gavino V. Wrote:I not only saw chip-capable machines (some models of which were years old and were close outs - which only demonstrated how ancient the equipment I had been sold was), they cost FAR LESS than my existing, much older machine! Like, more than $1000 less.
But then I discovered something else - something called an "auto-bi-PAP". They were all chip enabled, all cost hundreds less than my old equipment, and what's more, held out the possibility of addressing an issue like mine normatively - that is, as I needed more pressure, it would automatically adjust; as I needed less, it would automatically back off.
I called my pulmonologist to see what he thought. He thought it was a great idea, except that auto-bi-paps cost more than regular bi-paps. Other than that, it was fine. Worst case I would pay to get some equipment that I would not use long term, that might be inappropriate long term, but that would supply him with the data he needed. After all, I could always use my old equipment - with adjustments gleaned from the auto-bi-pap data, on its chip.
So I forked over the $900 for my Respironics auto-bi-PAP with chip. (They all come with chips now, or so I learned...) I began using it. It began recording data. I scheduled an appointment with my new pulmonologist for 2 weeks hence. During that time my sleep improved dramatically.
I brought the chip to the pulmonologist. He was so happy he congratulated me. I was pumped as well. I went in 6 mos later - continued stellar results. My next appointment was for a year later.
Epilogue 1 - So, in looking for machines on-line, I came upon this Apnea Board. It was all about patients taking charge of their own care. Wish I had found it before I even made the first MD appointment. Oh, well. Then what to my wondering eyes did appear but THE TECHNICIAN'S MANUAL FOR MY OLD CLUNKER MACHINE. For smiles, I downloaded it.
Well, I learned a couple of very interesting things - first of all, how to change the settings. I saw how easy it was (a hidden button) and decided to try juking up the pressure, just one notch. Enh. Then two. Okay. It became clear to me that variable pressure was a much better solution for me.
Now, I HARDLY recommend that patients fool with the settings. I did only because I had my spiffy new, much better auto-bi-PAP to fall back on. (I now use the old box, which I unnecessarily paid $300 more for, for traveling only, with adjusted settings recommended by my pulmonologist, which I put in.)
But much, much, much more importantly - i DISCOVERED MY OLD UNIT WAS "DATA CAPABLE" - that's right: capable of recording data about my sleep. The only thing was, it did not use a chip, being ancient. However, right there, in the technician's manual, it described that it had an RS-232 serial connection (see how ancient it was?) that could be used to download data to a PC, and that there was s/w that could be used to view it. Being a s/w guy, I could easily have printed out the results for my pulmonologist, or even stored them on a chip!
THAT'S THE POINT - despite my troubles, despite even having very old equipment, I COULD HAVE HAD ALL THE DATA I NEEDED - THAT MY PULMONOLOGIST NEEDED - ALL ALONG. So, tell me - Why didn't the "support" company let me know that? Why didn't either of my pulmonologists tell me that? Why didn't the clinicians tell me that?
Well, first and foremost, it's not the clinicians' job. They are immediately exonerated.
How about the physicians? Well, the first one absolutely should have stressed to me how important the data was, should have encouraged me to use a machine - auto or not - that recorded data onto a chip, as that is the most convenient and INDUSTRY STANDARD way to store and transport it. His script should have specified it.
(more to come. Again, I apologize for length, but since I was called out, the entire story is necessary. And, god forbid, someone might actually learn something...)
Gavino V. Wrote:The second - and my current - pulmonologist looked at me as if I had two heads when I said my machine did not record data, but I am sure that had he been my first pulmonologist he would have made sure I got one with a chip.
How do I know? Because he would not have recommended the supply company that at best dropped the ball; at worst sold me a "bill of goods". His recommended supply company, I have subsequently found out, had not been palming off old equipment without chips for years before my first machine was recommended.
Which brings us to the supply company. Why did they give me such an old machine? Why didn't they show me how to download data, or even inform me that I could? Why were they resistant to show me multiple options?
I reported. You decide.
The net/net of all this (yay! He's wrapping up!) is that what happened to me was a systemic failure - one that had aspects of innocent oversight, condescension and downright cravenness.
Yes, I agree - had I taken the initial stance of taking charge of my own care, I perhaps could have avoided some of the pitfalls. But I don't think so.
How was I to know that the original pulmonologist was not going to make me aware of my options? How was I supposed to know the importance of the data? How was I supposed to know all contemporary machines captured data, and most stored it on a chip? How was I supposed to know the amount of supplies I was sent by the supply company was too much? How was I supposed to know all that I came to know, only as the result of being on the wrong end of the system?
The answer, to any fair-minded observer, has to be that I wasn't supposed to know all that, any more than a breast cancer diagnosee is supposed to know, a priori, about all her options. IT IS THE DUTY OF ALL PEOPLE IN THE SYSTEM - YES, EVEN CLINICIANS - TO INFORM THE PATIENT OF THEIR OPTIONS.
I know, I said it wasn't the clinicians' job, and it isn't. But that's only because the clinicians' job description is flawed. As one of the clinicians here mentioned, many times people go to sleep centers without a clue as to why. Well, who's gonna tell them? And if it's supposed to be the physician, what if the physician fails to do so? Who's responsibility is it then? At the very least, the clinician should ask, if they suspect cluelessness, Do you know why your physician sent you here? If the patient does not, they should be encouraged to call the physician and ask.
Unless, of course, we all take the attitude that patients are stupid, emotional, uninformed or ill intentioned, such that they need to be talked down to, insulted, humiliated or made to feel like underlings.
People who suffer from apnea are sleep deprived. They might be more emotional or less capable of informed decisions, but that does NOT mean they're stupid. Nor does it mean that they do not have the right to be fully informed about their condition. And ALL parties in the system have an obligation - morally, and I would hope eventually, legally - to inform the patients of what is going on, why, what the options are, and what the costs are likely to be to them.
When I called my first pulmonologist, I could have been brought in - BEFORE ANY SLEEP STUDY - and informed what the condition MIGHT be, why a study was necessary, what was being measured, why it was being measured, what the likely outcomes would be, that there were several different kinds of equipment, how they differed, why data was important, etc. If it took 2 hours, so be it.
I would have save hundreds of dollars out of my own pocket, thousands in the medical system in total, would have been a much more informed patient, would have understood my options better, and would have reached a better outcome MUCH sooner (years sooner - YEARS) and at far less cost.
That is the reality. And I am not alone. Hardly alone.
Gavino V. Wrote:Meaghan - Can't you see how incredibly arrogant, presumptive, condescending and insulting what you wrote is? Did you not read one word??
My journey STARTED with other patients, their experiences, their outcomes. I am a reasonable person. I followed what I perceived to be reasonable advice. I can surely see that there are conditions where a regular CPAP might be necessary, altho I nonetheless struggle to see why a regular CPAP would in any way be superior to an auto CPAP, since, ostensibly, if someone needed constant pressure, the auto CPAP would sense that and keep the pressure constant at that level (or close to constant).
THAT'S NOT MY BEEF.
My beef is that I was precluded from getting information FROM THE SYSTEM. Physicians, supply companies and yes, even clinicians, even tho I give them more of a pass than the others.
You need to honestly ask yourself - If Gavino came in for the first time and I were to give him a consultation, what would I have informed him of?
Your answer is known only to you. I have no clue what it would be. Maybe had I seen you first, the outcome - and process - I was ultimately looking for would have come to pass. Maybe, had we all consulted with you first, there would be no reason for the Apnea Board...
I don't know you from anyone. By the same token, you don't know me. But I've just clogged up this thread with a TON of stuff on my perception of my story. You now have a much, much better sense of who I am and what I went thru.
My situation could clearly - absolutely - been ameliorated if an auto-bipap (and probably just an auto-pap) been prescribed at first. The question is, why wasn't that the case?
According to my newer (I've actually used him longer, now, than the first) pulmonologist -there is no good reason.
No good reason.
Had I gone to my new pulmonologist first, I would have gotten one - with a chip! Were I having problems, he could have analyzed the data and THEN sent me off to another sleep study, were the data to have indicated thus. I would never have looked for new equipment on my own. I would never have found Apnea Board. Wouldn't have needed to!
The Apnea Board exists BECAUSE of systemic problems like this. So, rather than chide me - poor, miserable wretch that you assume I am - you might want to look in the mirror - and not you, but the physicians and supply companies as well, to say nothing of insuruers - and ask YOURSELVES - Are WE doing the best we can do?
By the patient?
After all, for me, it's only my health.
For you, IT'S YOUR RESPONSIBILITY.
IT'S YOUR JOB.
Gavino V. Wrote:Robb -- Again, the condescension:
"The only thing that I get is that it is clear that you are beyond convincing of any positive situation. You may not be alone, but you are not among the majority."
First of all, you ASSUMED that I was "beyond convincing", without any information to the contrary.
Second, you state that I am not among the majority. Oh, really? And where is the data to support that? It's your opinion. That is arrogant. The very definition of arrogance.
To the first point, had you taken the time to read my long exegesis (and I am sorry for its length, but given the knee-jerk arrogance and condescenion of the "professionals" in this thread, it was necessary as a contrast, if nothing else), you'd see I in fact WAS open to a positive outcome - I GOT ONE. But only because of my dogged determination to get one. NOT because the system provided one "if I'd only have listened".
It was the system's duty to help me find one, not fight me tooth and nail. I had the great good fortune of finding a pulmonologist who was willing to assist me. I had the further fortune of having the financial wherewithal to pursue the solution I should have initially been presented with as an option. The system failed.
But I had FAITH in a positive outcome. And found one, DESPITE the system.
To the second point, majority schmajority. Don't you get it? iT'S NOT ABOUT MAJORITY - IT'S ABOUT HELPING PEOPLE. African Americans represented no more that 15% of the population at any one time in American history. So, should we have minimized their experience just because they were "not among the majority"?
You don't know - and can't quantify - how many, many more people like me there have been. Maybe you're right - maybe it's not the majority. But 49% is not a majority. Neither is 25%. Nor 15%. So, is that your consolation for allowing people to unnecessarily suffer?
I beseech you, as Cromwell said, from the bowels of Christ - think that you may be wrong!
You can try to minimize what I recount with ad hominem attacks, but what I hope you come away with is what I hope Meaghan does as well - when you are alone, in your secret heart of hearts, to ask yourself - Did I do right by my patients?
Did I do right?
Gavino V. Wrote:Finally, I hope, to Terry Brown - You state, unequivocally, in your introductory sentence:
"Patients end up not liking autopap, once they try it at home."
Well, factually, that's just wrong - I started with a conventional, non-auto bi-pap, and I MUCH prefer the auto, "once I tried it at home".
That is, again, condescension and arrogance. It amazes me how you don't get that!
Oddly, I found the rest of your entry quite interesting and informative. Had I been given that information before I got my initial machine - had I even been given the information that there was, in fact, a choice - I might still have selected a regular bi-pap. I may or may not have ever experienced an auto-bipap, which I prefer, now that I've tried them both at home.
BUT THAT'S MY POINT - I WAS GIVEN NO OPTIONS. I was NOT informed that there were such things as autopaps, much less ones that captured data on chips. I was NOT informed how having such readily available data would be helpful in my on-going process and treatment. Not by the physician; not by the supply company; not by the clinicians.
Once again, the clinicians can be absolved - to a point. But nonetheless, they are part of the system of treatment of us unwashed masses, and thus are morally responsible to some degree as well.
We have put our trust in you. If anyone is "fooling the people" for any amount of time, it certainly isn't we patients.
Just as I asked Robb and Meaghan - I beseech you, Terry, to think you may be wrong. We are not fools - we, the patients - either. We are intelligent, well-meaning individuals who for whatever reason of circumstance, do not know the right questions to ask.
You ALL need to do a much better job of helping us.
Not minimising us and our concerns. Us and our plights.