Replies to This Discussion

Permalink Reply by birdshell on October 29, 2009 at 1:43pm

I am very sorry to see anyone treated thus by a durable medical equipment provider of ANY kind. It isn't right, is it?

That said, I would suggest that we consider setting priorities. For me, that means taking care of my own health first. The mask companies have their 30 day return policies for a REASON. No matter how great the fitting devices, measuring, or experienced the fitter...the only true proof of a mask (for me) is sleeping whilst wearing it.

Any DME provider who is unwilling to help me more than once or twice is either uninformed or uncaring, IMHO. I happen to have the power to take my business anywhere, so it is fairly easy to "vote with my feet"--others may not have such a choice. Either due to location or to insurance contracts, some of us are forced to

When I first got my mask and machine, over 3.5 years ago, I thought it was a lot of rigamarole that I did not need to add to my life. I did NOT want to have to care for more stuff, and pack it up to travel. I had heard about surgery. I asked my doctor, and he said that he could tell just by looking at my anatomy that I was NOT a candidate for surgery. I was pretty disappointed.

However, I was so desperate to sleep less than 14-16 hours a day, I would have tried anything. There are those who say that the mask is of utmost importance to a new cpap user, and while it is important...I have a somewhat different view. I believe that it is the determination to make the therapy work NO MATTER WHAT that is the most important factor in success. I recently went back to try my ''first' mask, which I used for well over a year. I would never want to return to that mask now. However, it did serve me well at the time.

While it does seem counter-intuitive to have to tape up a brand new mask, I have done worse. There is NO mask that I have had that has had less than two modifications needed to make it as comfortable as possible. I do not like any leaks at all in my masks and have a hard time with straps slipping on my hair. But, am I going to go without my CPAP for even a nap due to such a trivial consideration? Not I, for I like spending more than half of my life awake and being at least semi-alert and active.

Personally I have chosen to be the best that I can be, no matter what and how it must be done.(Of course, I wouldn't do anything intentional to harm anyone else or myself.) Tape, velcro, safety pins, fleece, thread, fishing line, twist ties, and pantyhose have all made my success a possibility. If that is what it takes for me to sleep and protect my health in so very many ways, then that is what I have decided to do. My doctors and sleep labs and durable medical equipment companies are all there to HELP ME, not to force me to do this.

If they choose to truly help me and educate me, that is the best outcome. However, if they choose to help me in a manner that is not acceptable to a reasonable person, they are history. I have a couple of DME companies that aren't at the top of my list any longer, and will be the LAST that I call for any help. They are not in business to help me, but rather to help only themselves, and have proven that to me.

However, I will accept (settle for?) only good help. In doing so, I feel that I am raising the bar for a level of treatment that is humane and medically sound. I will read forums, I will ask for help wherever I go; I will find kindred spirits in any medical field and ask for referrals to those whom they know are best at managing CPAP. I will ask anyone and everyone for suggestions. I will also educate others as I do so, and in turn, hope that there are better things in store for all of us.

I have an unending gratefulness for the pioneer CPAP users, whose first machines were heavy and noisy. Their masks bit and creased their faces. They forged ahead and found a better life for themselves, and critiqued their treatment options while tweaking. They were instrumental in making my treatment easier. How can I complain about a few minor modifications in view of their sacrifices?

I am also the next wave of pioneer, in their wake. I try to give back to help others, keep aware of the changes in equipment and treatment (at least, as much as I understand), and campaign a bit for things to change. I go to support meetings and give my suggestions to others who are newer users. I learn from them, too, because they may have other ideas and/or information to share.

These are just a few of my thoughts. I think that we all have to make our own decisions and find our own answers. They may or may not have meaning for anyone else. This method is my answer, and seems to have worked for me. I merely hope that this will help someone else to find their answers. Best wishes in this endeavor; and keep on pappin' no matter what!

I have OSA; it does NOT have me stuck in limbo. 'If you work your CPAP program, it will work for you.' (with apologies to AA and other 12 step programs) ;) I, for one, am working my CPAP program to the best of my abilities. It is up to each of us to decide if that is what works best for us.

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Permalink Reply by Andy on October 29, 2009 at 5:22pm

Hi,

Sorry to hear that you're having so much trouble.

I'm new to CPAP, and have just finished my first full week with my machine. I've had some minor problems, but I'm dealing with them.

However, I'm not new to getting the service I need and deserve, whether it's from doctors or other medical providers, or from any other place where I'm the consumer.

If it were not for my "gentle persistence" I would still be without a CPAP machine, and wouldn't be getting one for another two months.

I have a "three-person" approach that I use to deal with problems. Rarely does it fail. 1) Talk with the technician you normally deal with. If that doesn't help, 2) Talk with that person's immediate supervisor. If that doesn't help, 3) Talk with the president of the company.

The bigger the company, the better step 3 works. I've talked with the presidents of huge companies such as Verizon, Bank of America, AT&T, etc. when steps 1 and 2 have failed. Believe me, when the original tech and his supervisor gets a call from the president of the company, they will take far better care of you than you could ever imagine!

Sometimes, though, even my method fails, or sometimes I'm just too uncomfortable to continue dealing with them, in which case I find a new provider before ditching the previous one.

Bottom line here is that you are the consumer, you are paying for the service (whether directly or through some insurance or other benefit) therefore you deserve proper treatment.

Now, this all said, people respond far better when you're nice than when you're not. I find that people respond better when I tell them up front what the issues are, and express my frustration at the problem, not at them. I also find it helpful to explain my emotional state. So, I'll say something like, "I know this is not your fault, I know you're doing your best, and I appreciate your efforts. However, I'm feeling ..., and I'm not going to let this go until I get... I hope you understand that I am not trying to be difficult, but I cannot accept anything less. Unfortunately, if you and I are not able to solve this problem together, I will need to get someone else in the company involved. But let's not worry about that right now. Let's you and I do what we can to work this out."

Hope this helps!

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Permalink Reply by 99 on October 29, 2009 at 5:43pm

i remember applying for a call centre job with a bank (i did not get the job) iand what they said to their staff answering the call was we will make you all managers

so when you ask to speak to the manager, perhaps that one had only been working for the company that very day. it may good to escalate the problem by asking for that ones superior as suggested by Andy

eAndy said:

Hi,

Sorry to hear that you're having so much trouble.

I'm new to CPAP, and have just finished my first full week with my machine. I've had some minor problems, but I'm dealing with them.

However, I'm not new to getting the service I need and deserve, whether it's from doctors or other medical providers, or from any other place where I'm the consumer.

If it were not for my "gentle persistence" I would still be without a CPAP machine, and wouldn't be getting one for another two months.

I have a "three-person" approach that I use to deal with problems. Rarely does it fail. 1) Talk with the technician you normally deal with. If that doesn't help, 2) Talk with that person's immediate supervisor. If that doesn't help, 3) Talk with the president of the company.

The bigger the company, the better step 3 works. I've talked with the presidents of huge companies such as Verizon, Bank of America, AT&T, etc. when steps 1 and 2 have failed. Believe me, when the original tech and his supervisor gets a call from the president of the company, they will take far better care of you than you could ever imagine!

Sometimes, though, even my method fails, or sometimes I'm just too uncomfortable to continue dealing with them, in which case I find a new provider before ditching the previous one.

Bottom line here is that you are the consumer, you are paying for the service (whether directly or through some insurance or other benefit) therefore you deserve proper treatment.

Now, this all said, people respond far better when you're nice than when you're not. I find that people respond better when I tell them up front what the issues are, and express my frustration at the problem, not at them. I also find it helpful to explain my emotional state. So, I'll say something like, "I know this is not your fault, I know you're doing your best, and I appreciate your efforts. However, I'm feeling ..., and I'm not going to let this go until I get... I hope you understand that I am not trying to be difficult, but I cannot accept anything less. Unfortunately, if you and I are not able to solve this problem together, I will need to get someone else in the company involved. But let's not worry about that right now. Let's you and I do what we can to work this out."

Hope this helps!

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Permalink Reply by kim smith on October 30, 2009 at 12:41pm

I used my bi-pap over a year, waking up with marks on my face, 2 places on my forehead where the mask pushed on, and then I had problems on/around my mouth. Well, I chose to go into the medical care supply office because after my recent annual sleep test I found out that my apnea had gotten worse. I needed to change machines to a servo-vent bipap which basically at this time I was actually "fitted" for a mask. I found out I am between a small & medium which is the problem with fitting my masks appropriately, but I have gone back 3x and learned alot. The respiratory therapist that handles my case is wonderful, when I am frustrated he says don't worry, we will find an answer. I am sorry you have not rec'd treatment like this, which I think changing companies may do you good. But I now have a mask so different than any other one I have had. There is one straight plastic spot on the middle of the forehead, there is a spot on bottom of mask that my chin sits on, there are about 6 velcro straps. What I have learned is that you may not be "normal" either the shape of the face, or whatever it may be. My specific problem turned out to be, I was opening my mouth which was moving the mask making it rub on the bridge of my nose, and causing major air leaks. There is a strap - I call it the " Shut your mouth strap" lol literally it goes around my head under chin and velcro on top, then my mask goes over that and I pull those velcro straps in whatever direction is most comfortable, it works for me. I also get up once a night to use the bathroom, but usually 330am or after at which point I leave the mask off. Now knowing we are all different, maybe 1 thing you could try would be to get the mask comfortable and have your spouse or a friend or family member mark the velcro with a marker so that you can put it on those marker setttings I also did that and it helped a bit. Every person is so different, but do not panic, because there are definitely answers out there !!

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Permalink Reply by susan mccord on October 30, 2009 at 1:01pm

This sounds like pro-active, very effective communication technique to me, Andy. Glad to have your input on SleepGuide.

Susan McCord :-)

Andy said:

Hi,

Sorry to hear that you're having so much trouble.

I'm new to CPAP, and have just finished my first full week with my machine. I've had some minor problems, but I'm dealing with them.

However, I'm not new to getting the service I need and deserve, whether it's from doctors or other medical providers, or from any other place where I'm the consumer.

If it were not for my "gentle persistence" I would still be without a CPAP machine, and wouldn't be getting one for another two months.

I have a "three-person" approach that I use to deal with problems. Rarely does it fail. 1) Talk with the technician you normally deal with. If that doesn't help, 2) Talk with that person's immediate supervisor. If that doesn't help, 3) Talk with the president of the company.

The bigger the company, the better step 3 works. I've talked with the presidents of huge companies such as Verizon, Bank of America, AT&T, etc. when steps 1 and 2 have failed. Believe me, when the original tech and his supervisor gets a call from the president of the company, they will take far better care of you than you could ever imagine!

Sometimes, though, even my method fails, or sometimes I'm just too uncomfortable to continue dealing with them, in which case I find a new provider before ditching the previous one.

Bottom line here is that you are the consumer, you are paying for the service (whether directly or through some insurance or other benefit) therefore you deserve proper treatment.

Now, this all said, people respond far better when you're nice than when you're not. I find that people respond better when I tell them up front what the issues are, and express my frustration at the problem, not at them. I also find it helpful to explain my emotional state. So, I'll say something like, "I know this is not your fault, I know you're doing your best, and I appreciate your efforts. However, I'm feeling ..., and I'm not going to let this go until I get... I hope you understand that I am not trying to be difficult, but I cannot accept anything less. Unfortunately, if you and I are not able to solve this problem together, I will need to get someone else in the company involved. But let's not worry about that right now. Let's you and I do what we can to work this out."

Hope this helps!

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Permalink Reply by Dan Hoover on October 31, 2009 at 7:53pm

Obviously you have a uncaring person fitting your mask. Call around and report and bad service to your doctor and insurance company. Try to fimd a supplier that has a respiratory therapist to try and help you.

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Permalink Reply by 99 on October 31, 2009 at 8:39pm

my mask is large with a medium insert or is the other way round a medium mask with a large insert

i cannot remember

my face is bigger on my right hand side and so there you have it

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Permalink Reply by Mike on February 4, 2010 at 11:39am

UPDATE from this user!

I suffered, needlessly, over 3 months, waking up every 90 minutes because the so-called professionals at my DME conspired to PUNISH me because I insisted on a nasal mask when the DME guy insisted I needed a full face mask. After 3 months of suffering, I filed official complaints with my doctor, my insurance company and with Medicare. Then the DME responded to my problems. They assigned a "legitimate" respiratory therapist from another office to work with me. He changed me to a nasal mask. It worked! He gave me an auto titrating machine (apap) to try for a week. It worked! Using that apap machine, he was the first person from his company to "actually read the data card" (from that machine) to study the stats that documented what was going on when I was asleep. I had complained many, many, many times that someone should do this but I was "continuously ignored". It seems it was not possible for them to read the card in my first machine, the Respironics RemStar Pro M-Series. However, the apap, a ResMed Autoset Vantage, was readable. That's why he let me try it out for a week. When it worked, he requested my doctor change my perscription to an apap. (But I ended up getting some kind of upgrade attachmentment (switch-out) to my Respironics RemStar M-series humidifier, instead of a ResMed Autoset Vantage. It is called a Respironics RemStar Auto M-Series but it is working for me, at least for now. (No one ever helped me with the really bad pressure sore problem, or even responded to my numerous mentioning of it. I am protecting it with bandaids that I cutt off both ends to fit between my eyes.) I got lots-and-lots of advice, encouragement and support from reading this forum and I am grateful. I solved a rainout issue with a hose cover. When rainout persisted in my mask, I got a Zoo Med Repti Heating Cable. It is the 15 watt cable and 11 and one-half feet long. I plug it into a Zoo Med Repti Rheostat to control it. The rheostat plugs into the wall and has an off/on dial that I place next to my apap on my nightstand. I rigged an overhead support stand for my hose using $8.00 worth of one-half inch pvc pipes. (You can paint pvc pipes.) It routes my hose from my machine on the nightstand, behind my bed and over my head. I can change positions with ease and it never touches my body. Through all of this, the DME people and my doctor were discussing my issues without involving me. I was the one who was suffering but they did not want my input. There is some kind of unholy alliance between the DME, the doctor, and the insurance company. It was impossible for me to change to another DME company. I am almost certain that some of the cpap/apap equipment I was given is used equipment, in spite of billing me for new equipment. (I won't even get into the gross overpricing and over-billing issues I suspect.) Overall, this has been a very, very, very horrible experience for me!!! If I had not been is such bad shape going into this cpap therapy, I would have abandoned it (and took my chances) when I was six weeks into it. Through it all, whatever the issues and frustrations, you must persevere!!! It is worth it to finally get to the point where you are sleeping well and feeling rested. Maybe one day, this whole process will be cleaned up and cleaned out. People who are struggling as you and I are struggling should be given follow-up sleep studies and observed to study their specific issues instead of being left to the incompetence of DME's who bluff and guess on a hit-and-miss basis, and, who influence their co-workers to punish their patients/customers just because of disagreements with someone who is suffering. Good luck, persevere and God bless!

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