The medical system as a whole relative to apnea
I agree---what a diverse range of experiences! I'm sure everyone realizes a poll like this does not come close to being a scientific survey. What good is a poll like this then?
Well, it gives us a chance to share experiences. It gives us a glimpse as to how our experiences compare with others on this board. It may even get a few of us thinking and analyzing how we might improve our own trek through the system. I hope it even foster's follow up topics. Who knows, with all the bright people we have posting and reading here, someone just may come up with a key strategy or novel idea to share with the rest of us eager hoseheads.
For those who have had great experiences I am pleased at your good luck. For those who have had experiences that were less than good, what would have made the process go smoother? I kind of hope this discussion focuses on medical procedure and policy within the medical system itself---not goverment policy. While that is a worthy and relevant topic unto itself, we recently had a lengthy and even heated political discussion about health care on a national level. I would jut love to hear what you think the hospitals, doctors, DME's, RT's, sleep techs, and even patients should be doing to increase apnea awareness, diagnostic procedure, CPAP efficacy--- whatever you think is relevent within the environs of the current medical establishment where you reside. What can the administrators, health care workers, and hose heads in the trenches do?
Is sleep medicine simply too young to achieve greater success diagnosing and treating apnea? Are there any single/few far-reaching changes you think are in order? Or does sleep medicine---or even medicine as a whole--- need to mature and develop in general regarding apnea?
Well, it gives us a chance to share experiences. It gives us a glimpse as to how our experiences compare with others on this board. It may even get a few of us thinking and analyzing how we might improve our own trek through the system. I hope it even foster's follow up topics. Who knows, with all the bright people we have posting and reading here, someone just may come up with a key strategy or novel idea to share with the rest of us eager hoseheads.
For those who have had great experiences I am pleased at your good luck. For those who have had experiences that were less than good, what would have made the process go smoother? I kind of hope this discussion focuses on medical procedure and policy within the medical system itself---not goverment policy. While that is a worthy and relevant topic unto itself, we recently had a lengthy and even heated political discussion about health care on a national level. I would jut love to hear what you think the hospitals, doctors, DME's, RT's, sleep techs, and even patients should be doing to increase apnea awareness, diagnostic procedure, CPAP efficacy--- whatever you think is relevent within the environs of the current medical establishment where you reside. What can the administrators, health care workers, and hose heads in the trenches do?
Is sleep medicine simply too young to achieve greater success diagnosing and treating apnea? Are there any single/few far-reaching changes you think are in order? Or does sleep medicine---or even medicine as a whole--- need to mature and develop in general regarding apnea?
Last edited by -SWS on Sun Mar 20, 2005 11:05 pm, edited 1 time in total.
Say, SWS, I have a silly idea! (and it is silly, stupid)
Don't know about most people, but my doc is always giving out the freebie samples of medicines those for-profit companies are always giving them.
How about finding some way of distributing freebie videos/DVD's to doctors, which explain all about OSA, sleep tests, helpful links for info, etc. It could be produced as a guide to anyone, so doctors can simply give one to every family that comes in, regardless of their conditions, maybe titled something like "Does someone in your family have sleep apnea?"
Dumb idea, I know. Besides, someone would have to pay for it. Know any super rich OSA sympathizers? Certainly someone filthy rich has OSA??
Maybe we can get Liam to act in it!!! And he can sing, too!
Linda
Don't know about most people, but my doc is always giving out the freebie samples of medicines those for-profit companies are always giving them.
How about finding some way of distributing freebie videos/DVD's to doctors, which explain all about OSA, sleep tests, helpful links for info, etc. It could be produced as a guide to anyone, so doctors can simply give one to every family that comes in, regardless of their conditions, maybe titled something like "Does someone in your family have sleep apnea?"
Dumb idea, I know. Besides, someone would have to pay for it. Know any super rich OSA sympathizers? Certainly someone filthy rich has OSA??
Maybe we can get Liam to act in it!!! And he can sing, too!
Linda
My experience in a nutshell: Doctors peered down my throat and asked me apnea screening questions for years, but I was sure I didn't have any signs of apnea. Just the "usual" snoring---heheheh! When my wife finally noticed me not breathing the doctor insisted on a PSG right away. I scheduled mine as far in advance as the sleep lab would allow! So far the system tried very hard to do it's job, but my own stubborness was the big shortcoming.
My DX and RX were administered like a game of volley ball. My primary physician sent me in for a PSG, I reluctantly slept, a strange sleep doctor whom I never met scored the study, and sent the paper work off to my doctor. He arranged for a CPAP at the recommended pressure without really understanding much about apnea or its therapies. I reported to Apria for a CPAP machine, not knowing what to say or ask. My doctor at the time scheduled no floow-up visits of any kind. At this point the system still functioned in my eyes, but not optimally.
I received a fixed pressure CPAP at 10 cm pressure, which treated me nearly as well as my current AutoPAP. At this point I ended up with viable therapy, and my health improved. I think I could have stayed at that fixed pressure 10 cm and fared okay until any indicatyions for a retitration. However, this is also where the system kind of faded away for me. My follow up therapy consists of the doctor asking, "So how are you sleeping?" My official DME is Apria when they decide to follow through with my request for supplies.
My situation is somewhere in the middle of the pack. I rated my experience as "poor" in the survey primarily for the system having "faded away". Fortunately my AutoPAP gives me great data that I understand. When I tried taking that data into both doctors I've used their eyes just glazed over something like this: . At this point I orchestrate my own sleep apnea follow up care, mentioning details to my approving (or acquiescing) doctor. I would have to give myself a failing grade for my extreme reluctance to be tested in the beginning of this whole sleep mess!
My DX and RX were administered like a game of volley ball. My primary physician sent me in for a PSG, I reluctantly slept, a strange sleep doctor whom I never met scored the study, and sent the paper work off to my doctor. He arranged for a CPAP at the recommended pressure without really understanding much about apnea or its therapies. I reported to Apria for a CPAP machine, not knowing what to say or ask. My doctor at the time scheduled no floow-up visits of any kind. At this point the system still functioned in my eyes, but not optimally.
I received a fixed pressure CPAP at 10 cm pressure, which treated me nearly as well as my current AutoPAP. At this point I ended up with viable therapy, and my health improved. I think I could have stayed at that fixed pressure 10 cm and fared okay until any indicatyions for a retitration. However, this is also where the system kind of faded away for me. My follow up therapy consists of the doctor asking, "So how are you sleeping?" My official DME is Apria when they decide to follow through with my request for supplies.
My situation is somewhere in the middle of the pack. I rated my experience as "poor" in the survey primarily for the system having "faded away". Fortunately my AutoPAP gives me great data that I understand. When I tried taking that data into both doctors I've used their eyes just glazed over something like this: . At this point I orchestrate my own sleep apnea follow up care, mentioning details to my approving (or acquiescing) doctor. I would have to give myself a failing grade for my extreme reluctance to be tested in the beginning of this whole sleep mess!
Last edited by -SWS on Sun Mar 20, 2005 9:59 pm, edited 1 time in total.
SWS --
You joined the forum in January. Was that at the same time as your sleep study? When did you have your sleep study and when did you find the forum? Had you done any other searching before or since being diagnosed? .....Does you wife like to say, "I told you so?" Ha!
I know my questions aren't medically related. But it helps to see how people are informed about what they have and about the equipment. I forget, did you get your auto after researching on the internet?
Linda
You joined the forum in January. Was that at the same time as your sleep study? When did you have your sleep study and when did you find the forum? Had you done any other searching before or since being diagnosed? .....Does you wife like to say, "I told you so?" Ha!
I know my questions aren't medically related. But it helps to see how people are informed about what they have and about the equipment. I forget, did you get your auto after researching on the internet?
Linda
Linda, I think that video is a great idea. I heard that even in recent years med schools spent but one or two hours covering the topic of sleep apnea. I hope that's not true today.
I was diagnosed with apnea maybe three years ago or more. I have participated in other sleep apnea forums as well. That is precisely where I learned about AutoPAP, heated humidifiers, and such!
I was diagnosed with apnea maybe three years ago or more. I have participated in other sleep apnea forums as well. That is precisely where I learned about AutoPAP, heated humidifiers, and such!
SWS --
Do you still participate on other OSA discussion groups? (I don't, but only because I have enough to occupy my time as it is). How do they compare, do you think. Are they all informative? I guess what I'm getting at, are these discussions a real help? My guess is yes, of course. Were they the best source of info for you, or the related internet sites? Or did you learn enough from your doctors to satisfy your needs at the time?
Perhaps the key is to get enough information to enough of the right people on a consistant and constant basis, as regular as all the other medical info dispensed to people. You described yourself as stubborn, and many of us were/are. But had there been enough in-your-face info out there, maybe your stubborness might have been shortened. For example, you might be stubborn about being tested for diabetes, or other things, but enough info is out there describing symptoms to make even the subborn among us to reconsider getting tested earlier on. ......only a thought.
Shame there isn't a blood test for OSA. Doctors sure love to give you blood tests. They could test for a dozen different things all at once, right?
--- Maybe another poll might be the question of where people got their most information about OSA? But I don't know how it might be phrased. ---
Linda
Do you still participate on other OSA discussion groups? (I don't, but only because I have enough to occupy my time as it is). How do they compare, do you think. Are they all informative? I guess what I'm getting at, are these discussions a real help? My guess is yes, of course. Were they the best source of info for you, or the related internet sites? Or did you learn enough from your doctors to satisfy your needs at the time?
Perhaps the key is to get enough information to enough of the right people on a consistant and constant basis, as regular as all the other medical info dispensed to people. You described yourself as stubborn, and many of us were/are. But had there been enough in-your-face info out there, maybe your stubborness might have been shortened. For example, you might be stubborn about being tested for diabetes, or other things, but enough info is out there describing symptoms to make even the subborn among us to reconsider getting tested earlier on. ......only a thought.
Shame there isn't a blood test for OSA. Doctors sure love to give you blood tests. They could test for a dozen different things all at once, right?
--- Maybe another poll might be the question of where people got their most information about OSA? But I don't know how it might be phrased. ---
Linda
Last edited by LDuyer on Mon Mar 21, 2005 3:33 am, edited 1 time in total.
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Sleeping With The Enemy
- Posts: 454
- Joined: Tue Jan 25, 2005 11:54 pm
- Location: Minnesota
I rated my experience as extremely poor.
Back in May of 1999, I was 8 months pregnant with my 5 year old son. My then boyfriend/now husband told me that he was really worried because I would stop breathing when I was sleeping. I was a horrific snorer and without CPAP still am.
I had been to the emergency dept with a swollen Uvula several times and other sore throat problems, swollen right paratoid gland. The doctors were aware of my severe heartburn.
Anyway, last week I requested a copy of my medical records and was shocked to find out that when I reported the observation of my husband that I would quit breathing, etc. The doctors note says:
SUBJECTIVE
"She does have difficulty sleeping where she will wake up several times a night. Her husband thinks that she stops breathing intermittently and then will wake up with a loud snore. She has always been a fairly heavy snorer. She also has heartburn."
ASSESSMENT: "Patient with a history suggesting possible sleep apnea worsening with pregnancy, also some gastritis heart burn reflux"
PLAN: "Advised her to raise the head of bed. I'm going to have her see Dr. Becker, ENT, regarding sleep problem"
Strange thing is, he never once mentioned the words "sleep apnea" to me. All he told me was to see the ENT and raise the head of my bed.
And the ENT said:
SUBJECTIVE
"apparently her boyfriend has noticed that she is having problems breathing at night. She has an interrupted breathing pattern in which she will stop breathing periodically throughout the night. She has been bothered by extreme fatigue more recently. She has gained about 20 pounds during this pregnancy. She says she has always been a heavy snorer, even when not pregnant.
IMPRESSION:
"history of obstructed breathing pattern at night with history of snoring. It is possible that she has some obstructive sleep apnea, although it is real difficult to say at this point. The fact that she is pregnant right now sort of complicates things and certainly the daytime fatigue she has may be a matter of her pregnancy. I have recommended at this point that she continue with the pregnancy. I don't think there is any risk. Once she is no longer pregnant, I would ask her boyfriend to monitor her breathing pattern to see if she continues to have spells of apnea. If so, then she needs a full sleep evaluation at Abbott-Northwestern"
I COULD NOT BELIEVE WHAT THIS ENT HAD WRITTEN, NEITHER COULD MY HUSBAND. THE ENT NEVER SAID A WORD TO US ABOUT SLEEP APNEA, NOR DID HE TELL HIM TO MONITOR MY BREATHING PATTERN OR MENTION A SLEEP EVALUATION.
He told me everything would be okay, I just needed to raise the head of my bed and my sore throat would go away with salt water rinses.
I'm still in shock. I could have been treated back then. I didn't even know anything about sleep apnea.
Back in May of 1999, I was 8 months pregnant with my 5 year old son. My then boyfriend/now husband told me that he was really worried because I would stop breathing when I was sleeping. I was a horrific snorer and without CPAP still am.
I had been to the emergency dept with a swollen Uvula several times and other sore throat problems, swollen right paratoid gland. The doctors were aware of my severe heartburn.
Anyway, last week I requested a copy of my medical records and was shocked to find out that when I reported the observation of my husband that I would quit breathing, etc. The doctors note says:
SUBJECTIVE
"She does have difficulty sleeping where she will wake up several times a night. Her husband thinks that she stops breathing intermittently and then will wake up with a loud snore. She has always been a fairly heavy snorer. She also has heartburn."
ASSESSMENT: "Patient with a history suggesting possible sleep apnea worsening with pregnancy, also some gastritis heart burn reflux"
PLAN: "Advised her to raise the head of bed. I'm going to have her see Dr. Becker, ENT, regarding sleep problem"
Strange thing is, he never once mentioned the words "sleep apnea" to me. All he told me was to see the ENT and raise the head of my bed.
And the ENT said:
SUBJECTIVE
"apparently her boyfriend has noticed that she is having problems breathing at night. She has an interrupted breathing pattern in which she will stop breathing periodically throughout the night. She has been bothered by extreme fatigue more recently. She has gained about 20 pounds during this pregnancy. She says she has always been a heavy snorer, even when not pregnant.
IMPRESSION:
"history of obstructed breathing pattern at night with history of snoring. It is possible that she has some obstructive sleep apnea, although it is real difficult to say at this point. The fact that she is pregnant right now sort of complicates things and certainly the daytime fatigue she has may be a matter of her pregnancy. I have recommended at this point that she continue with the pregnancy. I don't think there is any risk. Once she is no longer pregnant, I would ask her boyfriend to monitor her breathing pattern to see if she continues to have spells of apnea. If so, then she needs a full sleep evaluation at Abbott-Northwestern"
I COULD NOT BELIEVE WHAT THIS ENT HAD WRITTEN, NEITHER COULD MY HUSBAND. THE ENT NEVER SAID A WORD TO US ABOUT SLEEP APNEA, NOR DID HE TELL HIM TO MONITOR MY BREATHING PATTERN OR MENTION A SLEEP EVALUATION.
He told me everything would be okay, I just needed to raise the head of my bed and my sore throat would go away with salt water rinses.
I'm still in shock. I could have been treated back then. I didn't even know anything about sleep apnea.
Linda -
Much snipping
As far as the exhaustion - looking back I was pretty much out of it most of the time. I was falling asleep at work, driving, etc. I guess eventually I would have collapsed or suffered something worse like a stoke or CHF. Just goes to show how big a dope I can be. Fortunately for me, my dear wife knows my failings and is not afraid to discuss them with me at great length.
Scott
Much snipping
I would not have offered the symptoms - Remember, there was nothing really wrong with me. I did have severe exhaustion, which was getting worse. I really only went to the doctor to make my wife happy - I really thought I would be told that nothing was wrong and that would satisfy my wife.For even if the doctor asked how you were doing, you might not have offered the symptoms. Did you have the severe exhaustion and did that exhaustion affect parts of your life in new ways? In my case the exhaustion did, enough for me to pester my doctor with descriptions of my worried symptoms. If your exhaustion didn't seem out of the ordinary to you, then you might not have pestered the doctor either. So it was great you should be now getting the medical help you needed.
As far as the exhaustion - looking back I was pretty much out of it most of the time. I was falling asleep at work, driving, etc. I guess eventually I would have collapsed or suffered something worse like a stoke or CHF. Just goes to show how big a dope I can be. Fortunately for me, my dear wife knows my failings and is not afraid to discuss them with me at great length.
Scott
Scott --
I wouldn't beat yourself up over having been "stubborn" about your health, thinking nothing was wrong with you, and all. We're only human. And it's natural to not being able to see ourselves as others see us. Once a friend told me that when she saw me, the ashen look on my face worried her so much that she was certain I was suffering from congestive heart failure (a look she had seen before in someone else who suffered it). But all I felt was just a tad under the weather. It wasn't CHF, but it was serious. I simply didn't see it either. We're stubbon, often clueless, but human nonetheless.
Sleeping With The Enemy --
Amazing to read about your experience. Sounds like they didn't want to "worry your little head" about such terms as "sleep apnea." My own pulminory doctor (who deals with OSA in patients all the time) felt I didn't need to have a copy of my sleep test report, and shouldn't be searching the internet for information, believing I shouldn't "worry my little head" over such matters. What a condenscending arrogant jerk!! Don't they know its your body (and not theirs) and you have a right to know, especially since you volunteered the description of your symptoms in the first place? Makes me angry just reading your story. The only plus side is that at least they didn't overlook the diagnosis, at least in their reports. Thanks for sharing that story.
Linda
I wouldn't beat yourself up over having been "stubborn" about your health, thinking nothing was wrong with you, and all. We're only human. And it's natural to not being able to see ourselves as others see us. Once a friend told me that when she saw me, the ashen look on my face worried her so much that she was certain I was suffering from congestive heart failure (a look she had seen before in someone else who suffered it). But all I felt was just a tad under the weather. It wasn't CHF, but it was serious. I simply didn't see it either. We're stubbon, often clueless, but human nonetheless.
Sleeping With The Enemy --
Amazing to read about your experience. Sounds like they didn't want to "worry your little head" about such terms as "sleep apnea." My own pulminory doctor (who deals with OSA in patients all the time) felt I didn't need to have a copy of my sleep test report, and shouldn't be searching the internet for information, believing I shouldn't "worry my little head" over such matters. What a condenscending arrogant jerk!! Don't they know its your body (and not theirs) and you have a right to know, especially since you volunteered the description of your symptoms in the first place? Makes me angry just reading your story. The only plus side is that at least they didn't overlook the diagnosis, at least in their reports. Thanks for sharing that story.
Linda
-
Sleeping With The Enemy
- Posts: 454
- Joined: Tue Jan 25, 2005 11:54 pm
- Location: Minnesota
Just to clarify, my Canadian MD, hopefully you guys remember me raving about him is the one who last November told me I needed to have a sleep study because he suspected OSA.
I was diagnosed in January with severe sleep apnea then.
Sleeping With The Enemy, the enemy OSA, who would eventually kill me without my CPAP
I was diagnosed in January with severe sleep apnea then.
Sleeping With The Enemy, the enemy OSA, who would eventually kill me without my CPAP
Folks, let's face facts. If the medical community, either as a whole or individually, was more competent than "Poor" or "extremely poor", then we wouldn't be here on this board. Review most of the stories here! Sheesh, a horror-movie writer couldn't come up with more tales of horror! LOL
I've been one of the lucky one, I think. But I found out today that over $1400 of the sleep study bill, almost $400 of Dr. bills and the $799 of the APAP cost are going to be my responsibility (in other words "out of pocket expenses" to be paid while meeting my insurance deductible)! Fortunately I was smart enough to set up a Flex plan for my medical costs, so these costs will be covered with pre-tax dollars and my employer's contributions to the plan (minimul, but better than nothing). Also, my insurance plan administrator has been fairly clueless, but at least WAS willing to be educated (by me, using the wonderful information from the great folks here on this board. Thanks, by the way!!)
So, my vote was "Extremely Poor". And that was giving them the benefit of the doubt. After all, it only took my poor PCP 3 years to come up with the idea test for sleep apnea....and only after my suggestion!
But, this therapy WORKS! I'm feeling better than I have in years. And I'm playing with my son afternoons and weekends and not falling asleep at work at all!
I've been one of the lucky one, I think. But I found out today that over $1400 of the sleep study bill, almost $400 of Dr. bills and the $799 of the APAP cost are going to be my responsibility (in other words "out of pocket expenses" to be paid while meeting my insurance deductible)! Fortunately I was smart enough to set up a Flex plan for my medical costs, so these costs will be covered with pre-tax dollars and my employer's contributions to the plan (minimul, but better than nothing). Also, my insurance plan administrator has been fairly clueless, but at least WAS willing to be educated (by me, using the wonderful information from the great folks here on this board. Thanks, by the way!!)
So, my vote was "Extremely Poor". And that was giving them the benefit of the doubt. After all, it only took my poor PCP 3 years to come up with the idea test for sleep apnea....and only after my suggestion!
But, this therapy WORKS! I'm feeling better than I have in years. And I'm playing with my son afternoons and weekends and not falling asleep at work at all!
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Additional Comments: APAP, 8-14 cm H2O. |
This therapy WORKS!!!
Re: The medical system as a whole relative to apnea
-SWS wrote:Let's compare our overall impressions of the current "medical establishment" regarding how well they: 1) recognized our need for a sleep study or other relevant diagnostics 2) properly diagnosed us given the results of that diagnostic procedure, 3) administered effective therapy or treatment, and 4) administered suitable follow-up care.
We are rating the entire medical system from front to back on this survey. Just how functional or dysfunctional do you think the "system" is for sleep apnea candidates?
Well, there are many medical establishments they build now for many people. However, some of medical doctors are good which can really people regarding medical condition. But there is also medical expert which sometimes they ask the payment first before they give the treatment to the patient.
Medical TV shows