VA: usefully useless?

I use this term to describe the VA medical system.

Let me say that I have nothing against the VA. I am eternally thankful for them, and I credit them for saving my life by giving me 2 sleep studies and an ASV machine. This is what I describe as very useful, and I truly truly appreciate what they've done.

On the other hand, they confuse the crap out of me. I say 'useless' because I met the the pulmonary Dr today regarding my sleep study and results. My two studies were done back in April and this is the first time I've heard anything regarding my actual results. Initially I was told I had sleep apnea and to expect a call from the DME. That's it (that was back in May).

Today, he asked how I was doing and I told him I was doing much better since starting on the ASV but not as good as I think I should be doing. I was hoping for some answers, but he didn't seem to have any. In fact, he wasn't quite sure what an ASV machine is. I told him I got a lot of support with an online forum (cpaptalk) and then he referred me to National Jewish Hospital in Denver to join some kind of support group or something like that for us sleep apneatics.

He asked me "what can the VA can do to help". Well, not knowing what the VA had, I said "what are some of the things at my disposal through the VA that would help"? He said "go to National Jewish, you'll get a lot of good ideas there". So, duh, why did he even ask?

We talked about mask issues and if I had any problems with the mask, he directed me to call the DME. I asked what do I do if I develop any other issues with the apnea later? He told me to call my provider who is at another VA clinic.

Then he said he wanted to see me in 3 or 4 months. (I'm thinking, WTF for?)

So, in the end, I did get my hands on the final reports (2 studies/titrations) but outside of that, I really don't know why I was there today. I learned nothing other than where to go to get support.

Then, this afternoon, I'm reading the reports (done by a Dr other than the one I saw today), and under "recommendations" there are two:

1) Settings:

IPAP max 30
EPAP max 18
EPAP min 7
PS Max 18
PS Min 5
Humidification 3-4 and auto rate

2) If he (me) notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine. Please let me know if I can answer any questions regarding this report.

So what would she mean "I would select a back up rate on the ASV machine if I have continuted sleepiness"? I do have continued sleepiness and was hoping to resolve that today, but obviously the Dr in the report has a clue but the Dr I saw today does not.

So, that's what I mean by "usefully useless". Any suggestions or ideas?

I use the VA in CT and have to agree. I am grateful and thankful they provide the equipment and good equipment it is. For any thing else, it is a self-service operation.

And I don't even mind that except that since finding the one mask that works for me (Aeiomed Headrest) about 2008, I have had to continuously fight (and I do mean fight) to be able to get that one mask which works for me from my DME. Apparently, this DME (the lowest bidder) doesn't stock this mask and doesn't want to order it if they can get away with it. And like most DME's I have caught them in many bald faced lies.

What I have found out about the CT VA Sleep Center is they are still in the learning curve on sleep disorders and most of their docs were interns also learning. You may be seeing the very same thing. I had one sleep doc I flat refused to see for any reason. However, my primary doc was the very best they had.

Call the Patient Advocate to see if they can help you find a doc with experience then re-schedule to see that doc. Also ask the PA to direct you to the "Release of Information" office. They (ROI) have a form to request "ANY" of your medical records there. You can either wait for it or have it sent to your house. If you had gone that route you would have had the sleep report as soon as it was available. Here it can take 4wks after a PSG (go figure) if you are lucky and the doc isn't on vacation.

Then think of the VA this way - "If it is to be - it is up to me".
Cuz "if it means someone has to do something, it ain't gonna happen".

I've been reading my report and thinking that I may go see the Dr that wrote it. I got one of those VA letters that says I should call in to make an appointment with her, but when I called about it they said it wasn't necessary since I had the appt see the Dr I saw today. But today's meeting was so useless, I don't think I have a choice but to go see the one who wrote the report, rather than the one who read the report she wrote.

Frigging ridiculous. BUT: I still remain thankful because without the VA I could be dead right now.

ameriken wrote:Frigging ridiculous. BUT: I still remain thankful because without the VA I could be dead right now.

Yes, they have come a long way but have a long way yet to go. Imagine a National Healthcare System that would work this way - "eat or go hungry".

Tho I will say I have also come across some very good docs. I choose my docs now like I did college professors, talk to people and ask questions. If they don't like someone, ask why, it may be just what you are looking for.

EDIT: you may be able to find the docs profile online.

EDIT#2: Just cuz she authored that report means it is her job, nothing more. My last VA PSG authored doc order my pressure increase from 17 to 18. When the RT called I told him don't even bother coming over. IF I can NOT exhale at 17 wth makes him think I can at 18? Plus bc of my own work with a BiPap at home then I found a real VA sleep doc and was in the process of getting a BiPap ordered. So the authoring doc wasn't as good as I thought. It's just a job.

Thanks, good idea, I'm going to see if I can find anything on these Docs.

1) Settings:

IPAP max 30
EPAP max 18
EPAP min 7
PS Max 18
PS Min 5
Humidification 3-4 and auto rate

2) If he notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine. Please let me know if I can answer any questions regarding this report.

Regarding #2 of the above quote from my report, does anyone know what the Dr would mean by "If he notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine." ?

bug the crap out of them till you get the answers you need to make your therapy work.
gleen whatever knowledge you can from this site (this bunch is the greatest) so ask away.
whatever you do don't ever tell the VA you are self titrating, or for that matter you know what your talking about !
it's your health, good luck Brother *

ameriken wrote: Regarding #2 of the above quote from my report, does anyone know what the Dr would mean by "If he notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine." ?

I also have the Bipap Auto SV Advanced. Usually, on the Auto SV, the backup BPM rate, or "Breath Rate," is set to "Auto." But, you can turn off "Auto" and select a manual BPM. That is probably what the doctor meant. You should give her a call.

I seem to do better with Auto off, and with a manual rate of 8 or 9, considered low. You then need to set the Timed Inspiration as well--I have mine at 2.7, considered very long by most...

Not that you should copy my settings, but they are:

Flex Setting: Off
Max Pressure: 20
Min EPAP: 6
Max EPAP: 10
Min Pressure Support: 3
Max Pressure Support: 12
Breath Rate: 8
Timed Inspiration: 2.7
Ramp: Off

ameriken wrote:He asked me "what can the VA can do to help". Well, not knowing what the VA had, I said "what are some of the things at my disposal through the VA that would help"? He said "go to National Jewish, you'll get a lot of good ideas there". So, duh, why did he even ask?

Perhaps because he realized that you were more likely to know what you needed than he was. He's a pulmonologist, but is he also certified in sleep medicine? It doesn't sound like it. It would be nice if the VA could give you someone who knew more about OSA, but it's never a bad thing when a doctor is willing to listen to his patient.

Welcome home.

It is a managed health care system. The VA does routine and war related things well. However anything that is out of the ordinary is a struggle. The providers are generally assigned by the system.

I'd love to see a (sub)forum or permanent thread dedicated to sleepy Veterans, especially to share war stories with the disability system.

moresleep wrote:

ameriken wrote: Regarding #2 of the above quote from my report, does anyone know what the Dr would mean by "If he notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine." ?

I also have the Bipap Auto SV Advanced. Usually, on the Auto SV, the backup BPM rate, or "Breath Rate," is set to "Auto." But, you can turn off "Auto" and select a manual BPM. That is probably what the doctor meant. You should give her a call.

I seem to do better with Auto off, and with a manual rate of 8 or 9, considered low. You then need to set the Timed Inspiration as well--I have mine at 2.7, considered very long by most...

Not that you should copy my settings, but they are:

Flex Setting: Off
Max Pressure: 20
Min EPAP: 6
Max EPAP: 10
Min Pressure Support: 3
Max Pressure Support: 12
Breath Rate: 8
Timed Inspiration: 2.7
Ramp: Off

Hmm, so if I change the BPM's, does it change anything else with how the ASV works? A couple of weeks back I was thinking about flipping it off auto and raising the BPM to a higher rate, but my concern is that would change it to a straight bipap mode, and not operate in the ASV manner.

Meanwhile I am making an appt with the Dr that wrote my report.

What a runaround! I called the VA yesterday to make an appt with the Dr who wrote my report.

I'll refer to her as 'Dr W'. 'Dr M' is the useless doctor I met with on Monday.

Here's how my phone call goes (after being transferred from department to department about 4 or 5 times):

"I'd like to make an appointment with Dr W"

"Well you just saw Dr M yesterday".

"Yes, and he gave me my sleep report which I read when I got home. Dr W wrote in the report that if I still have sleep problems, that she may recommend a different back up rate, so I would like to see Dr W because I am still having sleep problems and want to discuss that backup rate".

"Well didn't you go over that with Doctor M"

"No, like I said, I just read it in the report I just got. I did tell Dr M I was still having sleep problems, but he didnt give me any ideas. So when I read Dr W's remarks in the reports, I decided maybe I should see her so we can discuss the backup rate like she recommends."

"Well Dr M is your doctor and you need to speak with him if you're still having problems."

"I just said I did, I told him I was still having sleep problems"

"What did he tell you to do?"

"He told me to join a group over at National Jewish Hospital in Denver. I guess they meet every week. He said they can give me more help with my sleep problems than the VA can."

"Well, (in a snide manner), National Jewish cant do anything for you because we are not associated with them in any way and you are not a patient of theirs, so I dont know why you would want to go there"

"I dont want to go there, it wasnt my idea, like I said, it was Dr M's. He told me to go there, why would he tell me to do that if they can't help me?"

"Well, I dont know, but you can't see Dr W because Dr M is your doctor. The best I can do is take your phone # and have Dr M call you because he's your doctor and you can't talk to Dr W".

So, I got stonewalled. And I haven't heard back from Dr M.

Anyhow, today I called the sleep lab at the VA because the DME said I needed to call them regarding a mask issue. While there, I decided to probe a bit. The techs at the VA are way too cool and are far more helpful and knowledgable about the machines and sleep apnea. I explained the situation that Dr M was not helpful, and I got one of those responses like he knew exactly what I was talking about. The tech said "In my opinion Dr W is one of the best sleep doctors in Denver and you should see her". I explained how I got stonewalled and so he gave me a suggestion to write her a letter explaining my sleep issues and that "I am not getting any answers" and could I meet with her for 30 minutes some time. So, at least he gave me an idea that may work. We discussed a couple of other things, and like I say, the techs are far more helpful.

So writing the letter to Dr W is my next step.

sometimes you can strike up a line of communication w/ the doc that has your answers & can get his extension or email & cut to the chase without all the BS. ....best chance of doing this is during an appointment.....The system is just so overwhelmed , the clerical folks are only doing their job.
there are a lot of caring folks in the medical field . Getting to them at times....Well, you know how that game is played
in the meantime this site is golden

ameriken wrote:

moresleep wrote:

ameriken wrote: Regarding #2 of the above quote from my report, does anyone know what the Dr would mean by "If he notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine." ?

I also have the Bipap Auto SV Advanced. Usually, on the Auto SV, the backup BPM rate, or "Breath Rate," is set to "Auto." But, you can turn off "Auto" and select a manual BPM. That is probably what the doctor meant. You should give her a call.

I seem to do better with Auto off, and with a manual rate of 8 or 9, considered low. You then need to set the Timed Inspiration as well--I have mine at 2.7, considered very long by most...

Not that you should copy my settings, but they are:

Flex Setting: Off
Max Pressure: 20
Min EPAP: 6
Max EPAP: 10
Min Pressure Support: 3
Max Pressure Support: 12
Breath Rate: 8
Timed Inspiration: 2.7
Ramp: Off

Hmm, so if I change the BPM's, does it change anything else with how the ASV works? A couple of weeks back I was thinking about flipping it off auto and raising the BPM to a higher rate, but my concern is that would change it to a straight bipap mode, and not operate in the ASV manner.

Meanwhile I am making an appt with the Dr that wrote my report.

Setting Breath Rate=# does not turn off ASV mode. PS will still rise within several breaths to Max Pressure Support if needed. But, you will then need to set Timed Inspiration as well.

deerslayer wrote:sometimes you can strike up a line of communication w/ the doc that has your answers & can get his extension or email & cut to the chase without all the BS. ....best chance of doing this is during an appointment.....The system is just so overwhelmed , the clerical folks are only doing their job.
there are a lot of caring folks in the medical field . Getting to them at times....Well, you know how that game is played
in the meantime this site is golden

That's what I'm trying to do...is get that line of communication. However I've got to get the appointment first and that is what the letter is about. What a riot. And people wanted the government to run health care for the entire country?

moresleep wrote:

ameriken wrote:

moresleep wrote:

ameriken wrote: Regarding #2 of the above quote from my report, does anyone know what the Dr would mean by "If he notes continuation of sleepiness and problems with sleep on these settings, I would select a back up rate for him on the ASV machine." ?

I also have the Bipap Auto SV Advanced. Usually, on the Auto SV, the backup BPM rate, or "Breath Rate," is set to "Auto." But, you can turn off "Auto" and select a manual BPM. That is probably what the doctor meant. You should give her a call.

I seem to do better with Auto off, and with a manual rate of 8 or 9, considered low. You then need to set the Timed Inspiration as well--I have mine at 2.7, considered very long by most...

Not that you should copy my settings, but they are:

Flex Setting: Off
Max Pressure: 20
Min EPAP: 6
Max EPAP: 10
Min Pressure Support: 3
Max Pressure Support: 12
Breath Rate: 8
Timed Inspiration: 2.7
Ramp: Off

Hmm, so if I change the BPM's, does it change anything else with how the ASV works? A couple of weeks back I was thinking about flipping it off auto and raising the BPM to a higher rate, but my concern is that would change it to a straight bipap mode, and not operate in the ASV manner.

Meanwhile I am making an appt with the Dr that wrote my report.

Setting Breath Rate=# does not turn off ASV mode. PS will still rise within several breaths to Max Pressure Support if needed. But, you will then need to set Timed Inspiration as well.

Thanks MS...is the the timed inspiration the 'rise time' or a separate setting?