CPAP Basics 5

SleepWellCPAP wrote:Hello All,

About a month ago, I started this topic to help new users of CPAP with the fundamentals of using their equipment.

This week’s question: What do you believe to be the fifth step on the road to success with a CPAP?

To recap what's been covered so far:

1. In my opinion, initial mask fit and cleanliness of the interface was most important. Others however, felt that efficacy data, knowledge of your condition, finding the proper machine, expectations, attitude, education, and getting an accurate titration were of primary concern.

Really......? Nothing new on here. And it is FREE to boot.

And isn't the term "accurate titration" more like the terms "army intelligence" or "political unification". It doesn't exist. Maybe you should write a book on how to actually sleep through a titration. Now that would be a best-seller.

2. Next on my list was tube control to accommodate changes in sleeping positions. Others posted positive attitude, comfort, getting used to the pressure, data from the device, and education.

Here let us be real simple. Go to Walmart and in the hardware department in the section for the Command products are these......http://www.command.com/wps/portal/3M/en ... 497&rt=rud

$3.97 for a pack of 2 and a CPAP hose with cover and Repti-heat cable fit in them perfectly. Stick them on the wall and forget about it.



Skipping the repetitive crap......

For this week, my answer is learning the specifics of your interface or mask. If you have made it though number 4, it is now time to really focus on the mask and your routine for using it. Everyone is different when it comes to cleaning frequency, how often the straps are adjusted and cushions replaced etc. In my opinion, this is what you should master next.

For those experienced users and expert commentators, this information will seem very rudimentary. New users however, I’m hoping will find some benefit. The theory behind putting this information in one place is simply to make it handy.

Thanks in advance to all who would like to make comments and suggestions.

Jim

Where is the HELPFUL information.

Oh that's right......It is the search box at the top of the page.


Maybe some insight on how to overcome claustrophobia or feelings of suffocation. Or how about how to deal with a doctor that is more interested in your money than your health? I got it, how about dealing with an RT at a DME that thinks that the patient SHOULD be left in the dark and let the "professionals" deal with your apnea. Can you answer me why most DME's only hand out one style mask to newbie's and never let them try different masks? The last I knew, my DME didn't stock the PResmed and Paykel "Magic" Full-Face Nasal Pillow system.



Allen (who got rubbed the wrong way today by his DME)

Hello All and good morning!

Thanks to everyone for pitching in comments on this topic! I'll do my best to reply to the posts so far.

Caffeinatedcfo questions specific recommendations for products to help maintain the mask. I have always advised Ivory or other pure soap or Controll III cleaning solution properly diluted. You want to look for products free of antibacterials and fragrances. However, I had a consult the other day with a customer who was using a quattro FX and her cushion after 3 weeks use was immaculate. This was an elderly client, and I ask her how she did it. "Oh, I don't know what I used" was her reply. "I took that same soap I've been using for years and cleaned the cushion everyday with very warm water, rinsed thoroughly and this is how it looks." Stay tuned, I promise I will find out with product she used and post it as soon as I know. I'll probably give it its own topic, that's how clean this cushion was. By three weeks use, usually you see some buildup on the cushion, and this one had nothing.

Carbonman is correct, I had to disguish my topic label. The others that have been started would be better titled, "CPAP - Advanced concepts".

Zoocrewphoto wanted me to comment on how to deal with difficult DMEs. Though I have posted thoughts on that prior, the easiest way to deal with a difficult DME is to find a good one in the first place. Before you are set up on the equipment, call and ask to speak to the person who sets up CPAP. When you get them on the phone say something like, "I''ve been prescribed a CPAP, can you tell me just briefly what that is and why it is so important that I get one?" If your answer to that question takes less than 5 minutes you should probably seek another company. By comparison, my response to that question takes about 15 minutes. It will tell you how much they know and if they care about your success. If the DME you're working with now is indifferent to difficulties you are experiencing, it is time to find another one. A good DME will be empathetic no matter how many times you have to call for assistance.

Continued next reply....

Cannot stop laughing!!!!!

jwerley wrote: Cannot stop laughing!!!!!

+1000

49er

continued from previous...

Chunkyfrog mentions efficacy data and a book about what your doctor won't tell you. Both excellent thoughts, reading detailed information from a device is certainly helpful and though not mentioned in the basics, is without a doubt worthwhile. Especially when a person doesn't perceive benefit from the therapy, knowing for instance leak prevalance and the shape of the leak line can tell if a person's sinuses are swelling up and are in need of more humidity in their circuit. If you do write about CPAP issues that are kept from patients, I'll buy one for sure!

Allen476 questions titration accuracy and what to do about claustrophobia. Though there are sleep lab folks on this blog that can probably answer much better than I, in my experience, claustrophobia is handled through daytime practice and medications if necessary. As far as accurate titration, whenever I have asked that question to the local sleep lab techs, they say that if the probes and wires lead to "lab effect" causing a patient to stay awake, with the doctor's permission a sleep or anti-anxiety medication is prescribed. Since I don't work at a sleep lab, I would be very interested in how that community would respond to that issue.

Thanks again to everyone providing comments!

Jim

SleepWellCPAP wrote:Though I have posted thoughts on that prior, the easiest way to deal with a difficult DME is to find a good one in the first place.

Many xPAP users are, by virtue of geography or insurance coverage, limited to a single DME. What is your advice about how to deal with a difficult DME when changing the DME is not an option?

Hello Drowsy Dancer,

You make an excellent point!

If your local availablity limits you to one company and are at odds with their service, there are only two options I see you having. One would be to purchase your equipment/supplies privately and see if your insurance will reimburse you. The second, and probably not as palatable, would be to try and make amends with your current DME. Just like any other business, DME companies like to keep not only their customers happy for repeat business, they do the same for their referral sources. Simply ask for a manager and explain your situation. If this doesn't result in positive change, I would inquire with your doctor and see if he/she or their nurse would be willing to intervene.

I read in another post that someone mentioned you should show up at a place of business during their busiest time. This is one thing I would highly recommend you NOT do. If you thought your service was bad before, my goodness, that just wouldn't help at all.

Hope that helps. Please post again if not. I'll be happy to address any specific issues as best I can.

Jim

BTW I would like to add my unbiased Book Review here for those who want to get their basic information in one place (and pay for it)(which is a little contrary to the idea of a Free Forum, but what the hey):

I read:

How to Tolerate CPAP Therapy for Your Sleep Apnea by Robert Dawkins PhD MPH

and

Sleep Well & Feel Great with CPAP, A Definitive Guide by Jim Swearingen

one right after the other, and my review is that Sleep Well & Feel Great with CPAP, A Definitive Guide is sophomoric, incomplete, ineffective as opposed to definitive and a waste of money even at $4.95 (which is only available to cpaptalk members as opposed to the general public (for obvious reasons)(which equally obviously flies in the face of really wanting to help people).

OTOH, How to Tolerate CPAP Therapy for Your Sleep Apnea , is written by a professional with infinitely far more knowledge, tons more content (seriously-- it took me twice as long to read it), the information is meaty instead of superficial SOS on burnt toast and would prove to be a far better work as a tool to achieve effective xPAP therapy in entry level users.

In addition, it's price is $4.95 for everybody at Amazon, so "IMHO" this is a guy that truly wants to help people (OK, me and Bobby may have brisk discussions in the past, but high grade steel is tempered by fire, TP is consumed).

SleepWellCPAP wrote:I read in another post that someone mentioned you should show up at a place of business during their busiest time. This is one thing I would highly recommend you NOT do. If you thought your service was bad before, my goodness, that just wouldn't help at all.

So you would retaliate?

How would you handle these "hypothetical" issues CB?

Reviews

Customer service by Joe whittle - 09/16/2012

Did business with them for about 2 years. Service was okay.

Then about a year ago I ordered essential and much needed supplies. I was told that they would ship them to me within 24 hours. I waited and waited. About two weeks later I called to inquire and was told the supplies were on back order.

I told them that they should have let me know of the delay and if they could not do better, maybe I should find a different supplier. I did not yell at them.

They made no apology and I changed providers and I have not heard from them since.

Insurance Claim by Tuniebell - 01/25/2012

Purchased a CPAP machine with humidifier in 2010 cash. They claimed that my insurance company was not in their network. Made an appointment to see the therapist after using machine. She was not in and they never called back to reschedule or even apologize for my inconvenience. Many months later while checking on our claims through Aetna found out that they were reimbursed for half of my machine. Have called numerous times for this check. Excuses, new owner, will talk to boss, etc. Just plain fraud.

SleepWellCPAP wrote:The second, and probably not as palatable, would be to try and make amends with your current DME.

An interesting word choice (emphasis added). It implies that it was the patient who somehow wronged the DME. Possible, I suppose, but this is, after all, a patient-centered forum.

SleepWellCPAP wrote:Simply ask for a manager and explain your situation. If this doesn't result in positive change, I would inquire with your doctor and see if he/she or their nurse would be willing to intervene.

How do you recommend the patient deal with a situation in which s/he is unable to get a return call from the DME? When the "manager" is not available? As a trivial example, I have called my DME twice now requesting the firmware upgrade available for my machine (from 2.01 to 2.53, which will give me several useful features). In neither case did I reach a knowledgeable individual. My name has been taken down twice and a return call promised. <crickets>

How should a patient deal with the situation in which the prescription is not filled as written (e.g. provision of "Escape" rather than "Autoset")? In your opinion, may a DME sell equipment as "new" if it has significant therapy hours accrued on the machine by a prior user?

How can a patient use contact with his or her insurance company as a means of obtaining greater DME cooperation?

SleepWellCPAP wrote:Hello Drowsy Dancer,

If your local availablity limits you to one company and are at odds with their service, there are only two options I see you having. One would be to purchase your equipment/supplies privately and see if your insurance will reimburse you. The second, and probably not as palatable, would be to try and make amends with your current DME.

Why would I need to apologize to a bad DME? My first DME straight out lied to me by telling me that the headgear for the quattro fx does not come in a size small. When I posted the links showing it for sale online, they told me they couldn't order it. Why on earth would I "make amends" to a DME that would lie about something so easily proven to be a lie. If they lie about that, what else will they lie about? And why would I want to keep them when they force me to go elsewhere for the very item I need to make my mask fit properly?

In my case, I was able to go to a different DME and get the headgear I needed. But not everybody else has that option. How about you tell us how a customer with no choice (and no insurance coverage for online purchases) would SUCCESSFULLY get the DME to order the item? It should not involve kissing up to them.

I read in another post that someone mentioned you should show up at a place of business during their busiest time. This is one thing I would highly recommend you NOT do. If you thought your service was bad before, my goodness, that just wouldn't help at all.

Jim

I believe the idea was to let their other customers see how bad their service is. In other words, if they treat you badly, they will lose more customers. They may be more inclined to help you if it meant not embarrassing themselves in front of other customers.

zoocrewphoto wrote:

chunkyfrog wrote:Therapy data, reading it and understanding it, (as too many doctors and techs will not or cannot do),
is critical. Is this on "the list" at all?
My therapy worked (uh, ok) without data (for a few short months) but with data, my therapy has improved at least 40%.
Others have had even more significant improvement using therapy data to understand and make adjustments.
Since the technology allows this, we are seriously amiss by ignoring it.

Excellent point. My mom used her cpap machine for years at a time with no real improvement. Originally, bricks were all that was available, so I don't know when that changed. But she was in one of her non-usage times (months without usage) when I started cpap. She saw my mask, tried it on, and got a new mask the next day. She then used her machine for half a night each night. Still not great, and of course, no real improvement. Her cpap is severe in terms of LONG apneas. I can't remember her untreated ahi. It was 3.4 with her prescription, but was still severe, only she didn't know it. After getting a couple nights with my machine and a new machine with full data and an apap range, she is filling MUCH better. That data, and the fact that my doctor prescribed a machine for me with data, is what got her back on track.

Doctors and therapists who are unwilling to work in the 21st century are a hazard to their patients.
My book, if I were to write one, would be titled,"What your Doctor won't tell you about CPAP"

That would be an awesome book!

+1

Hello Zoocrewphoto and Drowsy Dancer,

By saying "make amends", I'm not implying the patient has "wronged" the DME. What I AM saying, is to somehow find common ground upon which a positive relationship can be built.

Jim

There is no common ground when the relationship is built on lies.

Lincare constantly lied to me about masks. My only choice was a Ultra-Mirage FFM according to them. When I found out that there was a lot more to choose from, they said that they wouldn't work for me. I found through this website that they were outright lying to me. I fired them and bought my own mask that I wanted.

Some DME's really should be arrested for what they do. Then to add insult to injury, most of the prescribing doctors don't care after they write the prescription. They chalk it up to you not wanting to stick with it rather than ineffective therapy.

If diabetics were treated like OSA patients when they are first diagnosed, the majority would be dead. I challenge you to find a diabetic that doesn't participate in their own therapy. I challenge you to find a doctor/pharmacy that won't tell the diabetic patient how they are doing.

Yet it happens every day to OSA patients.

So why should I try to build a relationship on quicksand?

SleepWellCPAP wrote:Hello Zoocrewphoto and Drowsy Dancer,

By saying "make amends", I'm not implying the patient has "wronged" the DME. What I AM saying, is to somehow find common ground upon which a positive relationship can be built.

Jim

Well, in all honesty, what I wanted to know, is how to get a difficult to DME to go ahead an order what we need even if they have said no. Kissing up to them is not going to do it. And I don't see how I can find common ground when they lied and I know they lied.

So, back to my example. I needed small headgear for the quattro fx. (I assure you that my mask fitting issues improved a thousand percent once I got the new headgear - from somebody else).

If I were stuck with this DME, and they told me it did not exist, and then refused to order it when I supplied the order number and link to Resmed's website - what then? You may assume for this argument that I am stuck with this DME, and I can't afford $33 every 6 months to buy new headgear.

How do I get them to order the headgear I need? Who do I ask for? What is the normal chain of command? What leverage can I use?

I would also point out that my DME charged the insurance $306 for my quattro fx plus another $50 for the standard headgear. I was told that I could only standard headgear with it. I recently ordered a new full mask and a new small headgear from my current DME. I can't find the invoice, but it was about $200 for the mask and I think $38 for the headgear. I was not sent the standard headgear, and my mask was completely sealed in a Resmed bag. So, it was not true that I had to get a standard headgear AND buy a small. I checked the invoice because I wondered if I had paid for both, but it was a lot cheaper with this DME. The first place was a mess of lies and they really don't care if we do well or not.