VA has been good until now

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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MaxINTJ
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VA has been good until now

Post by MaxINTJ » Fri Dec 01, 2017 7:13 am

Still not getting anywhere with the Nuvigil request. I escalated to the Patient Advocate yesterday and am waiting to hear back.

The latest from my PCP was to wait for the sleep study results (like even IF they came up with settings and/or a machine that worked for me - the effect would be immediate) - OR - I could get a referral to a psychologist!

I questioned WTF good a psychologist would be for SDB induce daytime fatigue and sleepiness and was told CBT-I would help with that. WTF!? Not only have I been through CBT-I, sleep hygiene has ZERO EFFECT on SDB!

AND, I don't have insomnia - which is the only reason for CBT-I! (afterall, the "I" stands for INSOMNIA!)

I feel like I'm being treated by a bunch of morons! How do these people get in the medical field?

OK, I'm not a vanilla OSA patient, but really? Can't people be the least bit competent?

I will have to research who is higher up the chain in case the Patient Advocate route doesn't work...

My BP was fine last check, but I'm really beginning to wonder where it is now...

!
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Diagnosis of crappy sleep, desats under 80, maybe UARS

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49er
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Re: VA has been good until now

Post by 49er » Fri Dec 01, 2017 9:02 am

MaxINTJ wrote:Still not getting anywhere with the Nuvigil request. I escalated to the Patient Advocate yesterday and am waiting to hear back.

The latest from my PCP was to wait for the sleep study results (like even IF they came up with settings and/or a machine that worked for me - the effect would be immediate) - OR - I could get a referral to a psychologist!

I questioned WTF good a psychologist would be for SDB induce daytime fatigue and sleepiness and was told CBT-I would help with that. WTF!? Not only have I been through CBT-I, sleep hygiene has ZERO EFFECT on SDB!

AND, I don't have insomnia - which is the only reason for CBT-I! (afterall, the "I" stands for INSOMNIA!)

I feel like I'm being treated by a bunch of morons! How do these people get in the medical field?

OK, I'm not a vanilla OSA patient, but really? Can't people be the least bit competent?

I will have to research who is higher up the chain in case the Patient Advocate route doesn't work...

My BP was fine last check, but I'm really beginning to wonder where it is now...

!
Max,

Good luck with the patient advocate.

I share your frustrations with CBT-I being recommended as the one size fits all solution as one who has similar type issues to you although not exactly the same. It is not an issue of doctors being competent but simply having a limited toolbox when they have to deal with patients like us who have unusual situations.

The best doctor I ran across was a DO who said he didn't have an answer to my problems but would work with me to figure it out. Unfortunately, because he was impossible to get a hold of, I didn't sign up with him. Maybe I should have been more patient, I don't know.

Finally, for you folks who think Max and I have a bad attitude about CBT-I, please explain how it would deal with the issues of excessive sleepiness during the day. Maybe start a new thread?

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MaxINTJ
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Re: VA has been good until now

Post by MaxINTJ » Fri Dec 01, 2017 9:24 am

49er wrote:
MaxINTJ wrote:Max,

Good luck with the patient advocate.

I share your frustrations with CBT-I being recommended as the one size fits all solution as one who has similar type issues to you although not exactly the same. It is not an issue of doctors being competent but simply having a limited toolbox when they have to deal with patients like us who have unusual situations.

The best doctor I ran across was a DO who said he didn't have an answer to my problems but would work with me to figure it out. Unfortunately, because he was impossible to get a hold of, I didn't sign up with him. Maybe I should have been more patient, I don't know.

Finally, for you folks who think Max and I have a bad attitude about CBT-I, please explain how it would deal with the issues of excessive sleepiness during the day. Maybe start a new thread?
CBT-I (sleep hygiene) is something I can see being beneficial for people who a) have INSOMNIA, and b) are unable to do their own research.

I had my sleep hygiene cleaned up well before being sentenced to 2 months of CBT-I.

And no, I do not give them a pass because of a "limited toolbox" - SDB is not an unknown or rare condition. If we here can find out about it, someone in the medical profession has no excuse to be ignorant - especially when at least one of their patients has it.
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chunkyfrog
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Re: VA has been good until now

Post by chunkyfrog » Fri Dec 01, 2017 9:35 am

When I first heard about CBT-I, the speaker stressed that it was difficult,
and would not be the answer for everyone.
Apparently, a number of providers fail to read to the conclusion.
In many cases, it may be worth a try, but when it fails, time to move on.
To keep on hammering when you cannot find the nail is MALPRACTICE.

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Re: VA has been good until now

Post by USMCVet » Fri Dec 01, 2017 9:42 am

When i went to VA about my sleep deprivation the other week asking for something to make me sleep better so maybe i would feel more awake i was asked a million questions. I kept saying anesthesiologist said i had sleep apnea and I'm awaiting on study results. But no Dr kept trying to ask me if i was depressed, had PTSD, anxiety and even asked me " what is your relationship like with the government?" I was very confused by that question. Then after asking me all these questions she said well let me look at your records and see what it says about answers you gave me . Needless to say i was offended because it seemed like she was calling me a liar.

You made right call going to PA. Dealing with the VA at times can be exhausting.

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MaxINTJ
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Re: VA has been good until now

Post by MaxINTJ » Fri Dec 01, 2017 9:54 am

USMCVet wrote:When i went to VA about my sleep deprivation the other week asking for something to make me sleep better so maybe i would feel more awake i was asked a million questions. I kept saying anesthesiologist said i had sleep apnea and I'm awaiting on study results. But no Dr kept trying to ask me if i was depressed, had PTSD, anxiety and even asked me " what is your relationship like with the government?" I was very confused by that question. Then after asking me all these questions she said well let me look at your records and see what it says about answers you gave me . Needless to say i was offended because it seemed like she was calling me a liar.

You made right call going to PA. Dealing with the VA at times can be exhausting.
It's a shame too, because I have been VERY happy with the VA until now - except I had issues with my 1st PCP being a jerk too. Maybe it's not the system, but the people who are in the PCP roles? Almost everyone there has been very nice an easy to deal with - it's just those few bad apples.
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49er
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Re: VA has been good until now

Post by 49er » Fri Dec 01, 2017 11:02 am

USMCVet wrote:When i went to VA about my sleep deprivation the other week asking for something to make me sleep better so maybe i would feel more awake i was asked a million questions. I kept saying anesthesiologist said i had sleep apnea and I'm awaiting on study results. But no Dr kept trying to ask me if i was depressed, had PTSD, anxiety and even asked me " what is your relationship like with the government?" I was very confused by that question. Then after asking me all these questions she said well let me look at your records and see what it says about answers you gave me . Needless to say i was offended because it seemed like she was calling me a liar.

You made right call going to PA. Dealing with the VA at times can be exhausting.
I hope this disgraceful situation was an aberration regarding the way veterans are treated. What you experienced is outrageous.

49er

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Cpapian
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Re: VA has been good until now

Post by Cpapian » Fri Dec 01, 2017 11:25 am

The elephant in the room .......

Max ...... doctors don't understand anger. They consider it misplaced and that is a likely reason why they are sending you along those soft routes, like integrative medicine, phsychology etc.

Anger is what speaks loud and clear in pretty much every post you make and likely in your interactions with your medical practioners. Your anger creates a dissonance, a cacophony of sound in their ears. A good chance they are seeing your anger as the source of your problem or they are not willing to deal with you until you address your anger issues.

When a person is angry they are less likely to be able to provide a cogent summary of their situation.

Your anger stems from being sleep deprived and from not being cured and while understandable, it has possibly become a road block to your getting the help you need.

When medical professionals are not "hearing" you, another option is write to them. Outline your issues, what has been diagnosed and what remains outstanding and what you have done, then the impact on your life. Keep it factual and neutral.

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Re: VA has been good until now

Post by USMCVet » Fri Dec 01, 2017 12:08 pm

MaxINTJ wrote:
USMCVet wrote:When i went to VA about my sleep deprivation the other week asking for something to make me sleep better so maybe i would feel more awake i was asked a million questions. I kept saying anesthesiologist said i had sleep apnea and I'm awaiting on study results. But no Dr kept trying to ask me if i was depressed, had PTSD, anxiety and even asked me " what is your relationship like with the government?" I was very confused by that question. Then after asking me all these questions she said well let me look at your records and see what it says about answers you gave me . Needless to say i was offended because it seemed like she was calling me a liar.

You made right call going to PA. Dealing with the VA at times can be exhausting.
It's a shame too, because I have been VERY happy with the VA until now - except I had issues with my 1st PCP being a jerk too. Maybe it's not the system, but the people who are in the PCP roles? Almost everyone there has been very nice an easy to deal with - it's just those few bad apples.
If i we're to give all benefits of the doubt to everyone in the VA health care system that isn't totally negligent in would say a major issue at least in my area is burn out. They are understaffed, can't keep doctors working there, they shut down check out area and have 2 person in an office in the back now doing that. So i think they have kind of given up mentally and we all kind of merge into one person and they make assumptions about us and don't have the time to do their job properly.

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Re: VA has been good until now

Post by Grace~~~ » Fri Dec 01, 2017 8:29 pm

Cpapian wrote:The elephant in the room .......

Max ...... doctors don't understand anger. They consider it misplaced and that is a likely reason why they are sending you along those soft routes, like integrative medicine, phsychology etc.

Anger is what speaks loud and clear in pretty much every post you make and likely in your interactions with your medical practioners. Your anger creates a dissonance, a cacophony of sound in their ears. A good chance they are seeing your anger as the source of your problem or they are not willing to deal with you until you address your anger issues.

When a person is angry they are less likely to be able to provide a cogent summary of their situation.

Your anger stems from being sleep deprived and from not being cured and while understandable, it has possibly become a road block to your getting the help you need.

When medical professionals are not "hearing" you, another option is write to them. Outline your issues, what has been diagnosed and what remains outstanding and what you have done, then the impact on your life. Keep it factual and neutral.
Beautiful post, cpapian. I agree. Speaking to the doctors when you are unwell is so cruel. I have great shame that I have never been the advocate for someone sick who needed me and yet I have the help of such a kind person now.


You should never enter a hospital alone.
Or never let anyone you care about face doctors alone when they are suffering and ill.

I never knew these things. Wouldn't have believed them. Am so grateful now to have someone to stay with me.
I hope Max has someone as liaison too.
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MaxINTJ
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Re: VA has been good until now

Post by MaxINTJ » Sat Dec 02, 2017 12:47 pm

Cpapian wrote:The elephant in the room .......

Max ...... doctors don't understand anger. They consider it misplaced and that is a likely reason why they are sending you along those soft routes, like integrative medicine, phsychology etc.

Anger is what speaks loud and clear in pretty much every post you make and likely in your interactions with your medical practioners. Your anger creates a dissonance, a cacophony of sound in their ears. A good chance they are seeing your anger as the source of your problem or they are not willing to deal with you until you address your anger issues.

When a person is angry they are less likely to be able to provide a cogent summary of their situation.

Your anger stems from being sleep deprived and from not being cured and while understandable, it has possibly become a road block to your getting the help you need.

When medical professionals are not "hearing" you, another option is write to them. Outline your issues, what has been diagnosed and what remains outstanding and what you have done, then the impact on your life. Keep it factual and neutral.
Came back to answer a PM and read this.

You bet your ass I'm angry! They piled on even more Friday! I got a call from the hospital - at work, when I was busy, but I took it in the hopes that it was something worth while. STUPID ME.

Wasted 15 minutes of my time giving me attitude about talking with "someone who can help with sleep". "You know, anxiety can interfere with sleep?" (very condescendingly) I DON'T HAVE INSOMNIA!!!!!! STOP CAUSING ME ANXIETY!!!!!

WTF? Since when can SDB be cured by talking? I am far better off talking to a brick wall! At least they don't come back at me with TOTAL STUPIDITY! It's like they are totally clueless morons or they are purposefully doing their best to raise my blood pressure in the hopes I have a heart attack.

I was absolutely furious the rest of the day - but even then - and with the insomnia my PCP seems to think I have - I was asleep that night in 5 minutes. And yeah, most of my communication is in writing - evidence if I need it.

Future calls from them will be left to go to voicemail because I can't take any more of their stupidity. If it's important TO ME, I will call back.

Going away now - please, no more PMs.
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chunkyfrog
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Re: VA has been good until now

Post by chunkyfrog » Sat Dec 02, 2017 1:29 pm

Very sad. The value of an advocate is priceless!
Especially when the patient's perceived "attitude" overrides anyone's willingness to give care.
My mother-in-law was speaking Ukrainian, her first language, due to short term memory loss,
from hypoxia during her heart attack.
The hospital personnel were ignoring her, saying she was "babbling".
We had to repeatedly ask every nurse to remind her to speak English.
It was as simple as that.

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Re: VA has been good until now

Post by Okie bipap » Sat Dec 02, 2017 1:34 pm

Do you have medical insurance through your employer? If so, then use it and go to a doctor outside of the VA system. I can use the VA, but chose not to. I had one minor knee surgery done there back in the 1980s, and used to get my hearing aids from them. Other than those two things, I always used my medical insurance through work, Tricare, or a combination of the two. I now rely on Medicare and Tricare for life. I would rather not go through the aggravation of using the VA medical system.

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Re: VA has been good until now

Post by greatunclebill » Sat Dec 02, 2017 8:54 pm

Okie bipap wrote:Do you have medical insurance through your employer? If so, then use it and go to a doctor outside of the VA system. I can use the VA, but chose not to. I had one minor knee surgery done there back in the 1980s, and used to get my hearing aids from them. Other than those two things, I always used my medical insurance through work, Tricare, or a combination of the two. I now rely on Medicare and Tricare for life. I would rather not go through the aggravation of using the VA medical system.
Exactly. Medicare and TFL. Not stuck going to same doctors in the same facility if you don't like them.

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