rising leak rate, would like help, VA won't help

DoriC---The VA tech in the CPAP Clinic told me that giving me the information on my card was "not in my best interest." They will read the card if I mail it to them. They said they will send me a new card. I know it makes no sense but that's the way it is. I have private health insurance too, but the VA treated me before I got it. The insurance company is going to want a new sleep study before I get a new machine. They are also going to give me a hard time about going to a pulmonologist when I've already been prescribed a machine by someone else (whom I've never seen). I've told this story before, but I have never seen a sleep doctor. Not once. I was not instructed on the use of the machine. I was given the machine and a pat on the back. Everything, literally, I learned about CPAP came from this forum. My last request to the VA to see the doctor was denied as not essential. It's like I never left the service. Thanks to kind people like you, I get good advice. Thank you.

Did you read my post about "eat or go hungry"? Did you decide to go hungry?

Which doc were you denied seeing? Which VA do you use?

You obviously found your problem leak, good job. The machine prob was NOT done updating the display when you read it. It is not a "realtime" display and must complete its session and calculations before you get to see them.


fwiw -I have that version of Encore 1.8.49 working on Win7. But the card reader is a must to use the software. You were really willing to wait 3yrs before buying a card reader?

thimarine wrote:I have never seen a sleep doctor. Not once. I was not instructed on the use of the machine. I was given the machine and a pat on the back. Everything, literally, I learned about CPAP came from this forum. My last request to the VA to see the doctor was denied as not essential. It's like I never left the service. Thanks to kind people like you, I get good advice. Thank you.

Welcome to the VA... where you can eat or go hungry.

Dennis,

At the bottom of one of your posts, click on the machine name and see if what comes up on the cpap dot com site is what you actually have. All of my machines are like that Legacy model and they do NOT display data in the LCD screen.

If you have a machine that gives data in the LCD and it's that old, it would have to be an "M Series".


Den (also short for Dennis.......not Don or Donald)

thimarine wrote:Emblazoned on the machine on the words REMStar AUTO M Series.

There is a choice in the equipment setting for the M series machine.

I will briefly switch my profile equipment back to M series equipment so you can see the wording. It can be confusing.
If your machine looks like mine then you will know for sure. I imagine you just chose the wrong one in the drop down menu.

You will need that Infineer DT 3500 card reader. There is no getting around that for any Respironics machine prior to the PR System One models. It will work with the software you have and even the latest version of Encore Pro 2.4. The report I showed as example was done with Pro 2.4. I also have 1.8 on another computer.

At the Mako DT 3500 website there are driver updates for the latest Windows versions and even 64 bit computers.
Encore 1.8 won't likely work on a 64 bit computer if you have one. Encore Pro 2.4 does have a 64 bit version available.

All the Respironics machines even the latest PR System One models that offer data on the LED screen will only still offer that 7/30 AHI average. They did change the leak shown on the PR System one LED screen to only time spent in Large leak which is pretty much useless.

If you could get your regular doctor to write RX for CPAP you could purchase a new machine and humidifier or even get a gently used machine from cpapauction if your finances permitted it. The new machines use a SD card to gather data and the expensive care reader is not needed. If you could find one of these newer machines from an individual off of craiglist, that might be an option also. No RX required that way.

The S9 ResMed machines also offer data via SD card transfer to their software. The on screen data is more comprehensive than the Respironics machines are. If you ever consider a ResMed Autoset, make sure it is S9 series because their S8 series machines need a very special card reader that is even more pricey than the DT 3500 and harder to find.

So there are your options. Your machine is getting older. Best price I have seen on the web for that DT 3500 was around $40 and I think that was from overseas. Link for it is somewhere on this forum within the last month.
If you want the full reports you must either get the card reader to use with your machine or consider getting a new PR System One model APAP or similar product from ResMed. Other brands offer software but the software is much harder to come by.

When I checked this a.m. the machine said leak rate 22.4. Then when I checked an hour later, it was 46.6, which was down (7 day avg. ) from the day before. This makes sense regarding the updating by the machine not being done yet. But, thanks to the replies I've received, and how to check for a leak. (I did turn it on and plug the hole with my thumb with the elbow connector in) and found the leak at the elbow connector. I took out the elbow connector, connected the hose and---no leaks. Since the leak rate went down incrementally, I assume it will keep going down. That first reading you get though is really deceptive.

Den---Sorry about misreading your name. Small fonts on my computer. Thanks for your help.

Rather than buy the card reader, i will try to obtain a machine that uses an SD card. I think the only place i could get the reader when I last check was Hong Kong or Thailand, I'm not sure.

As for the VA--- there is no doctor's signature on my sleep study, I have no idea who the doctor is since the Indy VA uses doctors from the IU med center and most are residents. I have written the clinic director, the department and my local community outpatient basic clinic. I have also contacted the patient advocate. I've done this before. It is a battle I'm tired of fighting and they have more resources than I do. I consider it a victory getting in one of the clinics once a year so I can stay in the system so I can use it as my supplemental provider when I get Medicare in 4 1/2 years. I truly believe that the system would prefer us old guys just go die and leave them alone. For those of you who have never enjoyed the experience of a VA clinic, you don't know what you're missing--- and you should be happy about it. It's a minor victory just to get the receptionist to lift his/her head to look at you when you check in. I'm grateful for the medical care when I get it. I know I don't pay for it, but then again, I didn't ask to get invited to the party. The government told me I was a winner (or loser, regarding your point of view) in the draft lottery.

Ok, end of rant. Thanks all. As always, I learn something new from all of you. You are a great resource and a great help to everyone. God bless you all.

Dennis

Dennis,
Do you have any regular doctor that you know? Any physician, dentist, or PA or NP that can write scripts can give you a new script enabling you to purchase online and/or at the cpapauction.

If not, I do see the new models on craigslist all the time. Just have to watch for good deals in your area. Sometimes people expect to get what their insurance was billed and this is unrealistic expectation. I got both my M series machines off of craigslist and they were brand new at half what I would have paid online for them. My recent PR S1 APAP purchase was from a forum member who preferred to use a different brand of machine. Again gently used at about half the online price.
No scripts needed.

Just make sure that you fully understand models if searching craigslist. Often people don't know what they really have.

You will need a new humidifier. The new machines won't work with your existing humidifier.
SD cards are easy to come by. They do not have to be machine brand. Walmart 1 or 2 GB cheap brand will work. the HD cards for fancy cameras won't work anyway. If your computer has a SD slot, no need for card reader. If no slot any generic card reader will work. About $10 at Walmart. Some even come with the SD card.
There is also a way to reset therapy data on the machine to erase previous owners use.
Clinician manuals are available online or from one of us that has the same machine.

Good luck on your search. Cpapauction has a link in the top banner here if you want to watch it. RX is required though before bidding.

Pugsy--- I do have a friend who is a doctor. If all I need is a script then it's no problem if I'm paying cash. I'm sure Anthem won't pay for it since they have no idea of the sleep study done by the VA about 10 years ago. I forgot to mention that from the time I had the sleep study until I got my machine there was a 6 year wait. I had no idea how severe the problem was. All I knew was that I was waking up in the middle of the night unable to breathe and sometimes with a leg "paralyzed", which I now now was a really bad hypopnea with "sleep paralysis". I thought I was having a stroke. Even to this day, when I speak to my GP, who is a nice guy and good at most things, his eyes glaze over when I talk CPAP. I also know I have to take charge of my therapy and have been doing so as best I can. This forum is wonderful. I have a CD of owner's manuals and software sent by a kind individual. I really mean this---This forum has saved my life and improved the quality of my life. I have received some really "short" responses from some folks, but everyone has their quirks and even those have been very helpful. I think what you suggest is best regarding getting a script and going to CPAPauction and getting another machine. It seems most of the long term veterans on this forum have at least one backup machine.

Thank you again for all your help.

Semper Fi!

Dennis

Good luck, if you end up with a new or gently used Respironics PR System One APAP, let me know. Your Encore 1.8 won't work on the new machine. You will need Encore Pro 2.4xxx or EncoreViewer 2.0. I can help with Pro 2.4. Viewer 2.0 I don't have access to it and it costs $99.

thimarine wrote:I have written the clinic director, the department and my local community outpatient basic clinic. I have also contacted the patient advocate. I've done this before. It is a battle I'm tired of fighting and they have more resources than I do.

Maybe it's time to write your Congressman? Send him a copy of this thread.

thimarine wrote:I have written the clinic director, the department and my local community outpatient basic clinic. I have also contacted the patient advocate. I've done this before. It is a battle I'm tired of fighting and they have more resources than I do.

How many thought I was joking when I wrote, in another VA thread, that "if it means someone has to do something, it won't happen".

Get your equipment from the VA but don't expect anything and you won't be disappointed.