PB Silverline Software ?'s Need Help/ Input--Please!

Hello all...

After two more weeks of no response from our DME, I have finally decided that I will take the steps of helping my husband to monitor his care and then we like many of you -- will buy our own machine shortly from Cpap.com.

In the interim, today I ordered the "SilverLining 3.6 Data Management Software, SilverLining 3.6 Clinical Kit with software, 6' download cable and manuals" from Cpap.com, so we can begin on monitoring his progress, or I should say lack of progress....it's going terribly and he is in his 11th week now. Currently he uses a PB425 (rental through DME)--Can some please tell me exactly what data, I will be able to download from this machine? Also, if I download data, will it still be available on the machine should the Evil DME ever decide to download it....he's been telling us he'll call and pick-up the machine to do this, but so far 11 weeks into treatment it has not happened. And on top of that, the machine has been acting very strange the past few nights....it seems to be shutting itself down at times ?? during the night. Last night I noticed it twice over an hour period....it went dead silent, then I heard my husband gasping it seemed for air (through his mouth, despite using a nasal mask. Within a minute or so, it kicked back on, but that doesn't seem right. I've noticed this a few other times and asked my husband to relate this this to the DME, the next time they speak. Could it be there is a defect in the machine? He can only make it 4-5 hours a night--and then if he's able to fall back asleep at all it's only for about another hour. He's only sleeping 4-5 hours nightly and is totally exhausted all the time now. His overall sleeping time has actually become less since he started treatment.

We would also like to know what the report look like and if we will be reasonably able to interept the data....In the next fews weeks our PCP has agreed if this DME doesn't show any improvement, he will write us the RX so we can buy our own machine. He said he will do whatever he can to assist us in getting the best treatment. Apnea is not his speciality, but he has also referred us to a Pulmonary Sleep specialist who my husband will be seeing late in May (takes forever to get an appt because of lack of specialists in our rural area). He also referred us to an ENT, but surprise, surprise--she told my husband she feels he's a good candidtate for a UPPP--and also suggested a nasal septoplasy and then down the road some laser-type surgery to shrink his tongue (somnoplasty, I think--which incidentially is NOT covered by our HMO). Luckily because off all I have learned here, I've kind of steered hubby away from surgery for now. I have him read the posts and give him all the info I can from all I've found here. He's not much of a computer person, but is at least willing to listen and read the data I find for him. But, he is starting to feel desperate, because he his not improving at all, I'm afraid he may just give in and have surgery, if we don't get some answers or some assistance soon. He (our PCP) has also contacted the DME and his parent company and expressed how displeased he and we are with the care, and despite that, we've had basically no further contact with the DME. We've called, but he's either on the road or tells us he's swamped and we need to call back....this goes on and on and personally I don't want to deal with him AT ALL. My husband, is more easy going and keeps giving in, despite the fact he's feeling miserable, and a bit of a "bear" to live with these days.

We have decided when we do make our purchase, we will plan to buy the PB 420E (auto) machine not the Bi-level we currently use. This will be the best we feel, because of the "auto" capability and the fact that we already own a PB humidifer, back-up hoses and will soon have the software. We like the idea that we will have much more detailed reports available with the 420, as well.

I apprecaite any help any of you PB users can provide, especially regarding the software download, and not erasing the data from the machine, so to speak, until it's returned to the DME. I realize from this board the the data from the 425 will only be compliance data, but what exactly will "this compliance" data show???

This board is awesome, it is a wonderful resource and without it, we would have never even know you could download data from his machine. Let alone that it's something that probably should have been done already.

Thank you all..... .

Downloading the data does not erase the data. Unless you change the settings of the BiPAP, your DME cannot detect that you have downloaded the data.
I have the 420e, not the 425, so I cannot tell you what data the 425 records. I expect that it records a lot more than just compliance though. The 425 is a fairly state-of-the-art machine.

Is there a special reason your husband was prescribed a BiPAP? If so, it might not be a good idea to replace the BiPAP by an APAP.

Liissa,

I can't find a reference anywhere to the GoodKnight 425 downloading anything beyond compliance data. Did the DME say something specifically to make you think there is efficacy data being stored? On Puritan-Bennett's web page they just mention "compliance and other patient data" but unlike with 420E APAP they don't talk about storing 200 sessions of detailed data.

It may well be that the machine only stores usage because otherwise I'd think the additional data would be mentioned as it is with the other machines. Hard to say for sure, though.

Reval -- In answer to your question about the Bi-Level...

He was orginally given a straight CPAP -- But with a high pressure (17) and severe apnea (AHI of 99) he could not tolerate it--so within the first week or so we called the DME and requested an Auto-titrating machine, as it had been written in the his sleep study report that he may not tolerate straight CPAP, and the doc who wrote the report suggested an Auto machine may be much more comfortable for him with such a high pressure......But, of course, the DME told us (before we were as educated as we are now), that Auto's were NOT covered, but he'd try for a Bi-Level. We reiterated that the sleep report indicated an auto may be best, but he kept saying they weren't covered--I know now that was absolutley NOT true and that he simply won't make as much money as he will giving us the Bi-level....it's all about the money with the --DME.

Although the Bi-level is somewhat better than CPAP, he still is not having any improvement and not sleeping well at all. We've noticed when we watch the levels on the machine while it's operating, it never goes as high as 17--so we are hoping the auto machine will suit him better, time will tell once we download some data....plus it's somewhat less expensive and since we will be paying out-of-pocket, it makes more sense for us to purchase an auto and our PCP, feels that will be fine -- he too thought the DME was changing us to Auto vs the Bi-Level--he knows we now have Bi-level and that it is very costly, that is why he is trying to help us in anyway he can to make this work and be cost effective for our family--Sadly, it was the sleep lab who set up everying with this particular DME, not our PCP, and he is not pleased, as I mentioned before. Nonetheless, changing DME's at this point would likely not help us and would probably even cost us more...nor do I think sadly, there seem to be many good ones out there...On top of that we'll run out of benefits by the end of May, as they bill the Bilevel out at about $480/month for rental. Between that charge and the original charges for masks, hoses and humidifier the DME has pretty much exhausted our yearly benefit.

....All this and no help for my husband....it's very sad, very frustrating and I want him to get better more than anything....that is why we are taking the steps to pursue this on our own with follow-up with our PCP...and later the with Pulmonary doc....the DME is NOT helpful....and I have totally lost my patience with him....quite frankly...I do NOT like him AT ALL at this point.

....Thanks for your input.....can you tell me what report you can see from your 420 machine with the Silverlining software?

There is a Q&A about the GoodKnight 425 here on cpaptalk.com with the following quote..

Titrator asks: Will the GoodKnight 425 be able to download to SilverLining® Software and show events and AHI? What else will it record?
Yes, the GoodKnight 425 Bi-Level Device will be able to download compliance data with a new version of SilverLining Data Management Software. This includes long and short-term reporting in terms of number of days and hours the unit was used, percentage of the night spent at the setting pressure, percentage of time with mask off and detailed respiratory rate information.

Unfortunately, we can't tell from the context exactly what "detailed respiratory rate information" entails. It could either be a "Yes" or just a doubletalk non-answer to Titrator's question about events and AHI. Here's a link to the complete interview http://cpaptalk.com/in-house-cpap-news/ ... l.20041209

A LATE ADDITION

Should have done a search first. The archives have this very discussion from a while back viewtopic.php?t=4696&highlight=download+425 and it looks like the Silverlining will do you no good. Hopefully you haven't opened it yet and it can be returned. Ozij is pretty reliable so I think we can take that thread as a definitive answer.

I thought it looked awful much like the PB answer was dodgy about just what could be downloaded. I can't abide doubletalk and a pox on these manufacturers and their silly "compliance" download. Basically, any time you see marketing stuff that talks about downloading compliance it's because you ain't getting any sleep data.

...Well Well Well--the DME just called and guess what, he doesn't have the software for this machine? Huh? Are you kidding me??? He said the company has to order it from California somewhere and they won't have it for at least a week or so, so he can't do anything for us until they have it. I'll have ours in a few days and I only ordered it this morning from Cpap.com....This is outrageous in my opinion--but I wouldn't dream of telling him I've already bought our own....he seems to dislike me because I know so much more than he expects the average CPAP user to have knowledge of....I think it irritates him when I ask questions etc....but Oh Well...I think all patient's need to be their own advocate in their own healthcare...luckily our PCP follows that philosphy too and is always happy to answer any questions we have and to ask our opinions of how we want to be treated....He's a great doc (even though not an Apnea expert) we are thankful and happy to have him....I only wish there were more like him, who let their patients have input to choices in the treatment and overall healthcare....

Now...maybe I'm wrong--but doesn't that sound unbelievable that a DME doesn't have the software for the machines he gives to his apnea patients? Wow...

My frustration continues--Sorry I don't mean to rant, but I'm overwhelmed at how badly this is working....luckily I'm sure you all can help us more than the DME....and I am truly grateful for that. .

Liissa,

Read the above-referenced thread about downloading from the 425. The DME would be wasting its money to obtain software for downloading because all that's there is how many hours your husband has used the machine each night. Heck, you already know that.

I don't know why they have strung you along with promises of downloaded sleep data (are you sure they promised or did they just change the subject and avoiding giving you a clear "No" when you asked?) but there's nothing in the machine to download.

I'm no expert and don't know the particulars of your husband's case but it sure looks like the DME stuck him with an extremely expensive machine he doesn't need. Perhaps you can make them take it back and refund your out-of-pocket copay. It sounds like he needed an APAP, was prescribed an APAP and the DME foisted off a more expensive, unneeded BiPAP that wasn't prescribed. And to top it off they gave him one that won't allow them to monitor his treatment. Sure sounds like very poor business practices unless there's some other factor that isn't clear in this discussion.

Brett,

Thank you for the link...I had read it previously but, like you wasn't sure what they meant by "detailed respiratory rate information"...hopefully someone on the board has had experience with the 425 and has an example of the exact data it reports.

Brent Hutto wrote:There is a Q&A about the GoodKnight 425 here on cpaptalk.com with the following quote..

Titrator asks: Will the GoodKnight 425 be able to download to SilverLining® Software and show events and AHI? What else will it record?
Yes, the GoodKnight 425 Bi-Level Device will be able to download compliance data with a new version of SilverLining Data Management Software. This includes long and short-term reporting in terms of number of days and hours the unit was used, percentage of the night spent at the setting pressure, percentage of time with mask off and detailed respiratory rate information.

Unfortunately, we can't tell from the context exactly what "detailed respiratory rate information" entails. It could either be a "Yes" or just a doubletalk non-answer to Titrator's question about events and AHI. Here's a link to the complete interview http://cpaptalk.com/in-house-cpap-news/ ... l.20041209

A LATE ADDITION

Should have done a search first. The archives have this very discussion from a while back viewtopic.php?t=4696&highlight=download+425 and it looks like the Silverlining will do you no good. Hopefully you haven't opened it yet and it can be returned. Ozij is pretty reliable so I think we can take that thread as a definitive answer.

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Although I agree it won't help a lot with our current machine, I guess my thought was that it is better than nothing and when we do indeed buy the 420E (auto) machine, we will already have the software that will give us much more data.

Does that make sense???

[quote="Brent Hutto"]Liissa,

Read the above-referenced thread about downloading from the 425. The DME would be wasting its money to obtain software for downloading because all that's there is how many hours your husband has used the machine each night. Heck, you already know that.

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I'm thinking the DME maybe is not aware of how little information he will obtain from this machine...he seems to indicate he would be able to review data from a download, but wasn't specific of the details he would have. And I don't know, but I'm thinking maybe they have other PB machines they use, so maybe at least some other patients may benefit from them buying the software.

I really can't answer for them....I would think they would be much more familiar with the types of machines and the data availabe from them...it does seems strange to me, that they don't already know this...I guess they will find that out if they do ever come and take the machine for a download. From what I've read it also seems this machine is downloadable over a modem (telephone line), so that may be their plans...like I've said...this person doesn't like it when we ask too many questions....we try to be very kind to him and try not bug him with too many questions....he's not like a "happy camper" guy...he complains a lot about his work and his company and having to travel so much...Hum...maybe he needs a new job....But he is all we have for now....so we try to bear with him....Maybe we are too nice to him--the last thing we want to do is make him angry...at least at this point...then we'll never have any response at all. I'm really am at a loss as to what is really going on here--but I have learned from this forum than many, many people have a lot of difficulty with their DME's and that is why so many have chosen to "self treat" so to speak....that looks like the direction we are heading for now too.

My main goal is to keep trying....ultimately I simply want my husband to benefit from treatment, and I do not want him to give in to surgery that doesn't have very good success rates. But, I can some what understand that he's miserable, exhausted and looking for something to help....and so far this is not working....so sadly, I can almost understand why he would consider surgery....kind of getting desperate for some help. .

Liissa wrote:Although I agree it won't help a lot with our current machine, I guess my thought was that it is better than nothing and when we do indeed buy the 420E (auto) machine, we will already have the software that will give us much more data.

Does that make sense???

That makes perfect sense. You'll want to be able to look at the info from the APAP anyway.