Sleep apnea patient abandonment? Anyone experienced it?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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zoocrewphoto
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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by zoocrewphoto » Fri Feb 12, 2016 2:32 am

Stormynights wrote:I don't think the doctors are trying to do anything wrong. I think they just don't know any better. They probably don't get trained on how to use the masks and machines.

Exactly. Most doctors do not do more than diagnose and prescribe. They don't help you tak ethe pills. If the results aren't as hoped, they will change the dosage or prescribe something different. In the case of cpap, the prescription is for a machine and activity, something that they have never done themselves. It would be nice if all sleep doctors and DME employees actually went through compliance with a machine even if they don't have sleep apnea. Then they would understand things like the feeling of suffocation at low pressure, aerophagia, waking up at high pressures, leak, uncomfortable masks, etc. Their skills and advice would improve a LOT. But it is not a legal requirement. So, while they are failing their patients, they aren't doing anything illegal. They just aren't the best at their job. I had to leave my primary doctor because I realized she just wasn't handling my issues anymore. I had to diagnose and treat my bursitis on my own after 2 appointments for pain in my hip/leg. I also solved my own coughing problem after 5 months of coughing issues, 2 bottles of cough syrrup with codeine, and a prescription for cough pills. The cause was actually asthma due to a chemical spill in my mom's car, which I would borrow for a few long weekend trips. Once we realized the problem, we deep cleaned the car, and the problem stopped. But the doctor never considered allergies or asthma.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by 49er » Fri Feb 12, 2016 3:15 am

I have seen several sleep doctors and only feel that the first one came close to patient abandonment. The current sleep doctor has tried very hard to be helpful but unfortunately, due to some unusual issues I have in addition to sleep apnea, he is at a loss. As part of his attempts to problem solve, he ordered blood work to be obtained through my PCP which turned out to be normal. No other sleep doc I saw did this.

His appointments are 30 minutes long and unlike my experience with my previous sleep doctor who was always running behind, I have never felt rushed with this guy. And he has rarely been late although I suspect with my next appointment being in the afternoon, that might change.

My only criticism is I wish he would admit he doesn't know the answer vs. trying to come up with a diagnosis that I feel doesn't really fit. But in all fairness, many doctors have a hard time with this issue.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by Okie bipap » Fri Feb 12, 2016 10:43 am

I was abandoned by my first sleep doctor. He did the morning rounds when I had knee replacement surgery. He noticed my blood oxygen level was dropping during the night and prescribed oxygen while sleeping after I went home. He scheduled me for a sleep study, but never bothered to tell me. I found out when I got a letter from the sleep clinic telling me of my appointment. He met with me after after to go over the results and told me I needed a titration study. I never saw him again after that. He sent my prescription to Apria. Paris called me and said they could not fill the prescription because the doctor did not document a face to face meeting before requesting the first sleep study. His office would not return my calls, and they ignored Apria's request for information. After four months, I found a different sleep doctor and got retested.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by DavidCarolina » Fri Feb 12, 2016 10:59 am

OH YEAH. Until i got a neurologist who was a sleep director.

If it wasnt "in an out see ya".......it was total absolute incompetence.

Most sleep tests dont really give you the exact data you need. Thus, its a process of experience that you have to use.

You have to become your own Doctor on this one usually, even if you have a neurologist

I personally switched myself to bipap, despite the sleep tests, and solved my worst problems. My airway was
collapsing at exhale.

I dont have a lot of respect for "sleep doctors"

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by SewTired » Fri Feb 12, 2016 12:15 pm

MrGrumpy wrote:Anyone experienced it here in the USA? Where sleep docs will see you for fifteen minutes, take your copay and bill your health insurance several hundred bucks for a ten to fifteen minute visit. Pop in, chit chat for ten minutes, act artificially concerned and pop out?

Ive experienced that.

Anybody else here experienced it? Its called "patient abandonment." Its actually a crime, but rarely prosecuted or even charged.
Did you go in with a list of questions? Did s/he answer them? If not, why did you not bring up that you still had some questions unanswered? Did the doc review your AHI or other details? Did s/he ask you if you had any problems and you answered what your problems were? How did they respond or did they not respond at all?

A lot of what a pulmonary doctor does is observe. Do you have dark circles under your eyes? breathing difficulties? etc.

I'm not saying you have a good doctor, but I am saying that your summary doesn't in any way indicate that you suffered 'patient abandonment.' Unfortunately, I have experience of family members who think the doctor is supposed to be a mind reader and then whine and complain that the doctor was a quack and did nothing. I hear them griping about waiting hours in the ER, when in fact, much of the time is reading charts, reading your history, waiting for test results in addition to caring for patients who have much more urgent needs. Actually seeing the patient is a small amount of the time needed.

Patients are also their own worst enemy. Many of the cpaps available through Craigslist have never been used beyond a night or two. When I ask about that, it just comes down to "I don't wanna." If more patients were told that their NOT using their cpap could result in DEATH, they would probably take their machine use more seriously. But then, you would be amazed how many diabetics don't take their pills or use insulin until after they are hospitalized (sometimes even after that) because they don't want to be bothered or don't tell the doctor of their issues and ask for help. Some of the doctors are useless (just look at the diabetic forums!), but most try to help once they are aware of the problem.

I do AGREE that doctors who don't have personal experience of cpap may not be of much help in the mechanics of using the equipment. But equipment is not their area - that is supposed to be the area of the DME. But, to be honest, I have had similar issues with glasses - there seem to be very few who fit glasses who have a real handle on what it is to fit someone who has vision problems beyond simple long distance until they are many years in practice.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by MrGrumpy » Fri Feb 12, 2016 5:00 pm

Yeah, Ive gone in with written down lists of questions. My experience is most of these doctors, that gets on their nerves. Most of the doctors I have been to, they just prefer to take my blood pressure and pulse, temperature and weight and chit chat with me. My sleep doctor would have his tech do a download on my S9 machine, I'd always ask for a copy and it would just be a compliance download with basic 95th percentile pressures and AHI, stuff like that, real basic.

I fired my sleep doctor this past August because he would act openly irritated when I complained to him that my sleep quality was poor ever since the tonsillectomy. That really seemed to bother him a lot for some odd reason.

After I fired him, I got copies of his records and he was trashing me on paper, basically calling me a whiner. His records confirmed the suspicions I had for several years about that guy, that he was not even interested in improving my sleep quality. In fact, in his entire records I have, the ONLY real reference to anything sleep related were copies of my S9 downloads he had done over the years. No mentioning of "complaining of poor quality or non restorative sleep," complains of feeling extremely fatigued and tired after the tonsillectomy.

In fact, its almost like he is trying to AVOID discussing the tonsillectomy and any impact that had on the problems with my sleep Ive had since. Like he is trying to cover for the ENT that did the tonsillectomy....I know they know each other and are in the same town.

This current sleep doc that ordered the split night study I just had that I believe went very poorly, as I slept but it was not deep feeling sleep and they did not wake me up. This guy did not even bother to do a download on my S9 on the first visit.

I figure before its all over with, I will either have to titrate myself like some of you sound like you have been forced to do. Or I will have to shell out several thousand cash of my own money and bypass my insurance entirely on a new inlab titration study. Ive decided after this last split night study, Im never having another one of those, I did not like it, I did not like the tech either, she was real fat and appeared lazy like she did not take good care of herself. Any future sleep diagnostic study I am having (for pure diagnosis of OSA), Ive decided Im going to have a home sleep study, IN MY BEDROOM, ON MY OWN TIME. And not as wired up as the inlab studies are.

SewTired wrote:
MrGrumpy wrote:Anyone experienced it here in the USA? Where sleep docs will see you for fifteen minutes, take your copay and bill your health insurance several hundred bucks for a ten to fifteen minute visit. Pop in, chit chat for ten minutes, act artificially concerned and pop out?

Ive experienced that.

Anybody else here experienced it? Its called "patient abandonment." Its actually a crime, but rarely prosecuted or even charged.
Did you go in with a list of questions? Did s/he answer them? If not, why did you not bring up that you still had some questions unanswered? Did the doc review your AHI or other details? Did s/he ask you if you had any problems and you answered what your problems were? How did they respond or did they not respond at all?

A lot of what a pulmonary doctor does is observe. Do you have dark circles under your eyes? breathing difficulties? etc.

I'm not saying you have a good doctor, but I am saying that your summary doesn't in any way indicate that you suffered 'patient abandonment.' Unfortunately, I have experience of family members who think the doctor is supposed to be a mind reader and then whine and complain that the doctor was a quack and did nothing. I hear them griping about waiting hours in the ER, when in fact, much of the time is reading charts, reading your history, waiting for test results in addition to caring for patients who have much more urgent needs. Actually seeing the patient is a small amount of the time needed.

Patients are also their own worst enemy. Many of the cpaps available through Craigslist have never been used beyond a night or two. When I ask about that, it just comes down to "I don't wanna." If more patients were told that their NOT using their cpap could result in DEATH, they would probably take their machine use more seriously. But then, you would be amazed how many diabetics don't take their pills or use insulin until after they are hospitalized (sometimes even after that) because they don't want to be bothered or don't tell the doctor of their issues and ask for help. Some of the doctors are useless (just look at the diabetic forums!), but most try to help once they are aware of the problem.

I do AGREE that doctors who don't have personal experience of cpap may not be of much help in the mechanics of using the equipment. But equipment is not their area - that is supposed to be the area of the DME. But, to be honest, I have had similar issues with glasses - there seem to be very few who fit glasses who have a real handle on what it is to fit someone who has vision problems beyond simple long distance until they are many years in practice.
Id be dead by now if I didn't use my CPAP gear every night.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by chunkyfrog » Fri Feb 12, 2016 6:23 pm

Any time my doctor sees a list, he grabs it, grins, and dives right into addressing my concerns.
There are reports this reaction is becoming more common.
My doctor recognizes the list as a time saver.
Of course, if the list is a BOOK, probably not.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by MrGrumpy » Fri Feb 12, 2016 6:35 pm

My primary care doctor does not mind it if I come in with a list. My current primary doc, I should point out. He's the only one that acts like he likes lists, but he is real methodical so I think its his nature.

All the rest of my doctors, including my sleep docs, HATE lists. And not lists that are just complaining or gripes. Like if I come to my sleep doc with a list of problems I would like them to address and it looks like this:

1) my sleep quality deteriorated like crazy post tonsillectomy and I would like him to address it and correct it

2) old CPAP pressures I tolerated just fine pre-tonsillectomy no longer work, please sleep doctor, fix this problem

3) my sleep quality post tonsillectomy is very non restorative and Im very fatigued during the daytime, please get me back to pre-tonsillectomy sleep quality

4) I'd like to try this new Resmed mask that just came out, can you fax my DME so I can get it fitted?

To me, these are perfectly reasonable, specific and quite frankly, normal type lists when things are not going well with the CPAP machine anymore. My sleep doctor would get angry when I'd come in with a list like the above, I mean really irritated, angry...you could hear the irritation in his voice. I dont know, maybe he realized I was pressuring him to do some work or something and he does not like to do work he just wants to bill my health insurance. And I do know he was billing my insurance at like, $300 to $400 a pop. For fifteen to twenty minute visits.

Pretty ridiculous if you ask me. So I canned his sorry ass last August.
chunkyfrog wrote:Any time my doctor sees a list, he grabs it, grins, and dives right into addressing my concerns.
There are reports this reaction is becoming more common.
My doctor recognizes the list as a time saver.
Of course, if the list is a BOOK, probably not.
Id be dead by now if I didn't use my CPAP gear every night.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by archangle » Fri Feb 12, 2016 7:44 pm

Krelvin wrote:If all you are is compliant, you are not really getting the therapy you need. That is FRAUD!
Well, let's not go TOO far here.

I heartily agree that everyone should have a fully data capable CPAP and have it monitored, but even the old, dumb, assembly style CPAP medicine does have its benefits.

Give a bunch of apneacs a sleep study and titration, a manual CPAP, never monitor it, and have the patient be "compliant." Probably over 50% get a significant improvement in their quality of life.

The sad thing is that the odds would be much better given a proper CPAP and monitoring. There would probably be higher levels of improvement. Even sadder, poorly managed therapy leads to higher dropout rates of apneacs who give up on therapy.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by Cardsfan » Fri Feb 12, 2016 8:40 pm

MrGrumpy wrote:My primary care doctor does not mind it if I come in with a list. My current primary doc, I should point out. He's the only one that acts like he likes lists, but he is real methodical so I think its his nature.

All the rest of my doctors, including my sleep docs, HATE lists. And not lists that are just complaining or gripes. Like if I come to my sleep doc with a list of problems I would like them to address and it looks like this:

1) my sleep quality deteriorated like crazy post tonsillectomy and I would like him to address it and correct it

2) old CPAP pressures I tolerated just fine pre-tonsillectomy no longer work, please sleep doctor, fix this problem

3) my sleep quality post tonsillectomy is very non restorative and Im very fatigued during the daytime, please get me back to pre-tonsillectomy sleep quality

4) I'd like to try this new Resmed mask that just came out, can you fax my DME so I can get it fitted?

To me, these are perfectly reasonable, specific and quite frankly, normal type lists when things are not going well with the CPAP machine anymore. My sleep doctor would get angry when I'd come in with a list like the above, I mean really irritated, angry...you could hear the irritation in his voice. I dont know, maybe he realized I was pressuring him to do some work or something and he does not like to do work he just wants to bill my health insurance. And I do know he was billing my insurance at like, $300 to $400 a pop. For fifteen to twenty minute visits.

Pretty ridiculous if you ask me. So I canned his sorry ass last August.
chunkyfrog wrote:Any time my doctor sees a list, he grabs it, grins, and dives right into addressing my concerns.
There are reports this reaction is becoming more common.
My doctor recognizes the list as a time saver.
Of course, if the list is a BOOK, probably not.
#4. Your doctor does not have to fax your 'DME anything for you to get a new mask. They already have your original prescription from when you got your original equpment. Call them yourself and see if they carry what you want.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by MrGrumpy » Fri Feb 12, 2016 11:29 pm

Eh...where I am if I want to switch mask types and go through health insurance and local DMEs, I have to get the doctor to order it. This is North Carolina and its real conservative, plus you are not dealing with the smartest crowd down here.

If Resmed comes out with a new full face mask and I want to try it, I have either two choices. Pay out of pocket and just buy it from an online CPAP supplier I have a prescription with (smartest move I made regarding CPAP after my original machine and titration). Or go thru insurance/local DME. The second is hard to do unless its that third to six month "resupply" period. Then I can request a different type of mask, but have to go thru a bunch of crap to get it. Requests, phone calls, its a drag. Otherwise I can just punch in some numbers and my credit card and BAM its here in five days.
Cardsfan wrote:
MrGrumpy wrote:
#4. Your doctor does not have to fax your 'DME anything for you to get a new mask. They already have your original prescription from when you got your original equpment. Call them yourself and see if they carry what you want.[/quote]
Id be dead by now if I didn't use my CPAP gear every night.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by zoocrewphoto » Sat Feb 13, 2016 2:12 am

chunkyfrog wrote:Any time my doctor sees a list, he grabs it, grins, and dives right into addressing my concerns.
There are reports this reaction is becoming more common.
My doctor recognizes the list as a time saver.
Of course, if the list is a BOOK, probably not.

My doctor is this way too. My first visit to her was almost an hour, and she went over all my medications and issues. I had gone in with a list of things I was most interested in improving - blood pressure, asthma, allergies, and acid reflux. She made several changes to my medications which made a huge improvement right away. Some of my medications were causing the problems.

Each appointment would end with a written paper with any changes she made such as adding a medication, changing a dose, etc. The next appointment would start with checking that paper to see how the changes went. Did things improve? Any problems? Way better than my previous doctor.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by 49er » Sat Feb 13, 2016 2:33 am

zoocrewphoto wrote:
chunkyfrog wrote:Any time my doctor sees a list, he grabs it, grins, and dives right into addressing my concerns.
There are reports this reaction is becoming more common.
My doctor recognizes the list as a time saver.
Of course, if the list is a BOOK, probably not.

My doctor is this way too. My first visit to her was almost an hour, and she went over all my medications and issues. I had gone in with a list of things I was most interested in improving - blood pressure, asthma, allergies, and acid reflux. She made several changes to my medications which made a huge improvement right away. Some of my medications were causing the problems.

Each appointment would end with a written paper with any changes she made such as adding a medication, changing a dose, etc. The next appointment would start with checking that paper to see how the changes went. Did things improve? Any problems? Way better than my previous doctor.
I recently switched PCPs and am excited about working with this person as I felt the previous one had stopped listening. For my upcoming physical, I definitely intended to have a list but I greatly appreciate these reminders so that appointment stays focused and on track.

I know it is hard to motivate yourself to switch doctors because finding a potential replacement is not easy. In my situation, obviously, one meeting doesn't tell the whole story but I sure liked what I heard and that is why I am quite optimistic I found a good doctor.

Glad your new PCP is working out ZC.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by Guest » Sat Feb 13, 2016 12:52 pm

MrGrumpy wrote:
Pretty ridiculous if you ask me. So I canned his sorry ass last August.
And he probably doesn't care. You've probably learned that if you see a doctor twice and you are unhappy with his/her care, it's time to find someone else. Too many people just keep going to the same person and expect the care to magically change. Unless you have certain problems, where there are a very limited number of doctors who treat that problem, or you live very rural, it is inconvenient at most to find a different doctor. My problem is that I find them and then they leave to become hospitalists or retire. Anyway. It's good that you are done with that doctor. The way things are going now, in future, most sleep studies are going to be done at-home unless you have complicating factors. In addition, as you have already realized Mr Grumpy, when you want something paid for by someone else, you have to jump the hoops. While Medicare and my insurer paid for my machine and a mask, I bought my other masks and stuff because waiting was intolerable. Part of the problem is that each DME interprets the Medicare rules differently. As soon as my 13 months are up, I'll be switching to someone else who gets it.

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Re: Sleep apnea patient abandonment? Anyone experienced it?

Post by palerider » Sat Feb 13, 2016 5:37 pm

Guest wrote:
MrGrumpy wrote:Pretty ridiculous if you ask me. So I canned his sorry ass last August.
And he probably doesn't care.
nah, the doc was probably relieved.

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