Upset Newbie, please advise

[obrosk]

Well, I used my half hour lunch to call Lincare to inquire about a different machine (as mine does not provide data) and at first the representative acted as if she had no clue what I was talking about (data? what kind of data?), then she said I didn't need to know any of that (that that information was only for doctors and clinicians to know), then finally she said I wouldn't know what I was looking at anyway. I told her that I'd been reading about the different machines online and on here and that I would like a machine that could provide data on how I sleep at night. She told me I should stop reading what other people say and just trust in the machine I have.

I told her I was going to ask my doctor for a different machine and she went into a complicated explanation about data capable machines needing (a special antenna) and that the company only provides the data if you get special permission to download it from their server and that there is no such machine that can give you daily readings. (???)

I am soooo frustrated! I am not usually an ignorant person, but I don't know what to do. This has been hard enough to deal with without this additional frustration. How do I go about getting a machine that provides data? Any advice would be appreciated.

[Hawthorne]

It appears you have a Fisher & Paykel machine. The only Fisher & Paykel machine that has software and will give you detailed data is the 254 --- as far as I know.

I'm not sure where the software for the 254 is available.

Most people here have Resmed or Philips Respironics machines or Intellipap machines but there are a couple of people on the forum who have the Fisher & Paykel 254 and the software.

You can do a search of the Fisher & Paykel 254 and you should find them. You could PM them.

It may be that you will need to have your doctor write a prescription for a particular machine to get a data capable one ( in any brand). Does your DME only carry Fisher & Paykel or do they have other brands of cpap machines? Fisher & Paykel make excellent cpap machines but not as many people on this forum have them.

[harry33]

when I started with my CPAP in 1995, there was no interest in data being examimed by the user, now it seems that every new user feels the need to exaamine all their data from every night, this may be good but it may lead to self obsesion with CPAP use

[newhosehead]

Well, I used my half hour lunch to call Lincare to inquire about a different machine (as mine does not provide data) and at first the representative acted as if she had no clue what I was talking about (data? what kind of data?), then she said I didn't need to know any of that (that that information was only for doctors and clinicians to know), then finally she said I wouldn't know what I was looking at anyway. I told her that I'd been reading about the different machines online and on here and that I would like a machine that could provide data on how I sleep at night. She told me I should stop reading what other people say and just trust in the machine I have.

I told her I was going to ask my doctor for a different machine and she went into a complicated explanation about data capable machines needing (a special antenna) and that the company only provides the data if you get special permission to download it from their server and that there is no such machine that can give you daily readings. (???)

I am soooo frustrated! I am not usually an ignorant person, but I don't know what to do. This has been hard enough to deal with without this additional frustration. How do I go about getting a machine that provides data? Any advice would be appreciated.

Hello and welcome! I got started with Lincare also and I didn't know anything (hadn't discovered this forum yet). Oddly enough, I found this forum because it was listed in Lincare's literature. I was stuck with a non-data capable machine and when I called, I got much the same runaround you did, except mine said there was no such machine. I went to my doctor and asked him to write a prescription for a fully data-capable machine, which they STILL did not want to honor.

It took a couple of phone calls from my husband and myself regarding business practices, etc and our willingness to go elsewhere very quickly and viola! A fully data capable machine became a reality and was traded for the machine I had with no extra charge. You really have to be your own advocate, sad as that is. They are supposed to be here for the patient, but far too often it seems, they are not.

Good luck and dont give up.

Jeanette

[ZQuest]

Hello: Welcome


I'm sorry to read about your frustration dealing with these individuals,is bad enought having to deal with this sleep disorder but to also having to put up with such people.I think that one of your issues that youre facing is to educated yourself a little bit better about this disorder and it's treatment...perhaps brush up on the CPAP terminology so you can speak to these people and they could see that you do know and understand what youre talking about,and that you do want to take part in your own therapy , specially when they try to give you the run around... and guess what? everything that you need to know to deal with these individuals is right here in this forum,I have read sooo many negative things about Lincare allready, incredible... You must start doing a little bit of research on this forum and i'm sure that you will find a lot of usefull information..... It is very true that you must be your own advocate !!!! frustration only harm yourself try to relax and educate yourself and you will see how everything will work itself out ..But above all do not give up!!!!


Wishing you lots of luck on your therapy: Phil

[Janknitz]

Are you absolutely stuck with Lincare? Many insurance companies will cover you with more than one DME company, although they may have a "preferred provider" from which you can get equipment for the least out of pocket cost. If you are willing and able to pay a little more, it opens you to more possibilities for providers, but your insurance may cover any DME provider, so it's worth checking. Usually you are not absolutely stuck with one particular provider UNLESS you have an HMO (like me )

If you have a choice of other DME providers, I'd get on the phone and call around until you can find a provider that will work with you to help you obtain a data capable machine to meet your needs.

Your presence on this forum indicates that you want to take an active role in your treatment--you can't do that with tools that don't give you the information. That means you need a data capable machine, a doctor and a DME company that work with you rather than take on a paternal role of managing your care for you.

Meanwhile educate yourself about data capable machines and about general principles of insurance reimbursement for CPAP equipment and supplies so that nobody can try the type of baloney you got from Lincare successfully on you.

[ilvsleep]

I just went through the same thing and I changed DME's. I have to tell you the RT from my docs office called the sales rep and told him what machine I wanted and I did get it!!! It took my docs office calling and speaking to someone there. That helped alot for me! Now when I got to the DME's to pick up the cpap the RT thwre told me there wAS ABSOLUTELY no way I could access my data!!! I did play dumb and just chuckled to myself!! Somethings I am not going to argue being I got the cpap I wanted!!
I was feeling the same way you were a few days ago... I was near tears because even though my brain understood what I had learned, I still couldn't voice my opinion and come up with the right terminology. Today I feel a little more confident with terminology but I have a long way to go!!! Good luck!!

[SleepyT]

when I started with my CPAP in 1995, there was no interest in data being examimed by the user, now it seems that every new user feels the need to exaamine all their data from every night, this may be good but it may lead to self obsesion with CPAP use

I disagree Harry....no self obsession. Just the need to know what is going on with our therapy. A diabetic is not being self obsessed just because they want to know on a daily basis what their blood sugar is. IMO every user has the right to look at their data from each night...if they choose to.

[newhosehead]

when I started with my CPAP in 1995, there was no interest in data being examimed by the user, now it seems that every new user feels the need to exaamine all their data from every night, this may be good but it may lead to self obsesion with CPAP use

I disagree Harry....no self obsession. Just the need to know what is going on with our therapy. A diabetic is not being self obsessed just because they want to know on a daily basis what their blood sugar is. IMO every user has the right to look at their data from each night...if they choose to.

Well said, SleepyT, well said. And I am someone who checks both on a daily basis. It is part of my routine for my own well being.
Jeanette

[obrosk]

Thank you all for the advice. I put in a call to my doctor. Hopefully he will understand and get Lincare to issue me a different machine.

It's not like I need to see my numbers every day (and become obsessed, as was mentioned). I just want to make sure the machine is working for me and with this one I have no way of knowing. I've spent too many years feeling exhausted. Now I want all the help I can get.

[nosenabook]

obrosk, I got that spiel and immediately changed DMEs. They were annoying in a lot of ways and I had plenty of other choices. Once I thought to look. I found a DME who will tell me the code if I want it for accessing the data. So I feel pleased and very lucky.
I will know in a week or two.

In the meantime, I have the same F & P machine I got 5 years ago. It has worked well for me, never had a problem with it, and still produces the correct compression. Note my machine below.

I still want data.
And the newer machines are very much quieter.

[mattman]

First off let me say something I say all the time - there is no excuse for treating people poorly and no excuse for crappy customer service. Sorry to hear you got the runaround like that.

That being said, I also think it can help us all (in everything) to better understand where others are coming from and I think it relates in these situations.

One thing I think people on our side (The patient side) really don't realize is just how apathetic the average patient is. Beyond apathetic even.

The average patient who gets medical equipment really honestly doesn't give a rats rear-end about the equipment. I cannot tell you how many times I would go out and try to setup equipment for someone and constantly get cutoff mid-sentence with "Is this going to take long? I'm going out to dinner" or "Listen, can you hurry this up, I'm going grocery shopping".

I've even had patients flat out say, in as many words, "Look, you get paid to make this work. Stop talking, make it work and leave. Now.".

So, combine dealing with that all day, every day WITH front-line phone people who aren't trained by the companies in all the myriad different types of oxygen concentrators, wheelchairs, nebulizers, CPAPs, APAPs, walkers, beds, compression hose, ostomy supplies, tracheostomy supplies, braces, etc etc etc etc and... well... you see where we all end up.

I say this, again not to excuse crappy customer service, but to shed light on the fact that sometimes, some of these people simply don't know how to deal with the 1 patient in 10,000 who suddenly really DOES want to know these things that they've never had to go find out before.

mattman

[LinkC]

I disagree Harry....no self obsession. Just the need to know what is going on with our therapy. .

I disagree with that! It isn't a "need"...just a preference. The vast majority of xPAP patients do just fine without self-monitoring and tweaking. Others, like us, PREFER to know what's going on with our therapy.

(Just an observation...the fact that you see it as a "need" underscores an obsession with it.)

[DoriC]

In my particular case as the caregiver and not the patient, it is absolutely essential to have the data, but I also think many people without a data-capable machine have failed with their therapy because they were struggling and couldn't actually "see" what was going on in order to make the proper adjustments in their treatment. And as Mattman describes, I understand that many people just have no interest in investing any time in their health and don't take it seriously enough. When I worked in the medical field I would ask some patients if they'd like me to explain their new prescriptions to them but they'd be in too much of a hurry to leave and would get in trouble later on. Having knowledge is the power needed to succeed in anything in life. As with diabetes, actually understanding and monitoring it gives one power over the disease rather than just taking pills or injections as prescribed and not looking further into what is really happening to them.

[frh]

For some reason I have become obsessed with the need to respond to this topic.

Sleep Apnea snuck up on me and just about destroyed my quality of life. Over the years I slowly became less able to do anything that required any level of concentration. Seemingly simple things like updating my business website, responding to emails or returning customer calls in the evenings became next to impossible. I stopped going anywhere in the evenings, or for that matter driving at night because I just could not stay alert.

I became sick and tired of being tired and in a mental fog a lot of the time. A few months ago I worried about being able to drive my wife to her sleep study at 8 pm, then return home safely. I would have re-scheduled it for during the day if that were possible. While waiting for her to get wired-up I started reading a brochure I found in the room. In the time it took to read it, I realized what my GP, a pulmonologist, a cardiologist and a couple of other medical specialists didn't figure out. My own sleep study simply confirmed I have Obstructive Sleep Apnea.

After that realization I began to believe compliance and optimization of my CPAP therapy offers the promise of reversing those symptoms. I am more angry than you can imagine that my sleep doctor told me I am not qualified to participate in my own therapy or have access to my own data. Not only will I never go back to that jerk, I will ask some tough questions before I keep an appointment with another sleep doctor.

My first DME refused to give me a data capable machine. They are no longer my DME. The Respiratory Therapist at my current DME warned me to stay away from Sleep Apnea forums and even threatened to tell my insurance company if I change my settings. Shame on her.

My GP is supportive, but does not know much about Sleep Apnea. It would be a lot easier to have medical support to help work through the variables to optimize my therapy. But I feel it is important enough to work it out for myself if I have to. If that attitude makes me obsessed with OSA, so be it.