Need to vent a little!

[Missyb0o]

I called my RT today to see if we could get one of the gel masks that you all so kindly suggested. Before the called I looked on the med supply website and they do carry them. My RT did not answer her phone of course and I left a message about the facial pain, loosening the straps, and the subsequent air leaks. I told her about the wonderful suggestions and great place that I have found here. Due to my sleeping only for 3 hours at a time, I was exhausted and took a nap. She called back and left me a nasty message about how she could order it for me but she fitted the one I have now and it fit fine. She also went on to say that I should not be listening to anyone here because I have to do what is best for me and all of the people on here are unique and probably not even on the same high pressure. The proceeded to tell me that my insurance will not cover another mask. Interesting. She had no information about my insurance while here and no one in the office could even tell me what my copay was going to be. They gave me a high estimate just in case. I had to call my sleep doctor anyhow to tell them the dosage of my RLS meds that I was stepping up to. They of course asked me how my new equipment was working out and I told them what had happened today. Needless to say, I have stirred a hornets nest and still have no idea when my new mask is supposed to be delivered. The key word is delivered- isn't that what a medical supply delivery company is for? To deliver medical equipment? Thank you. I am finished.


Missy

[LSAT]

I called my RT today to see if we could get one of the gel masks that you all so kindly suggested. Before the called I looked on the med supply website and they do carry them. My RT did not answer her phone of course and I left a message about the facial pain, loosening the straps, and the subsequent air leaks. I told her about the wonderful suggestions and great place that I have found here. Due to my sleeping only for 3 hours at a time, I was exhausted and took a nap. She called back and left me a nasty message about how she could order it for me but she fitted the one I have now and it fit fine. She also went on to say that I should not be listening to anyone here because I have to do what is best for me and all of the people on here are unique and probably not even on the same high pressure. The proceeded to tell me that my insurance will not cover another mask. Interesting. She had no information about my insurance while here and no one in the office could even tell me what my copay was going to be. They gave me a high estimate just in case. I had to call my sleep doctor anyhow to tell them the dosage of my RLS meds that I was stepping up to. They of course asked me how my new equipment was working out and I told them what had happened today. Needless to say, I have stirred a hornets nest and still have no idea when my new mask is supposed to be delivered. The key word is delivered- isn't that what a medical supply delivery company is for? To deliver medical equipment? Thank you. I am finished.

Missy

I don't think 'delivery' necessarily means...'to your door'. Delivery can mean from manufacturer to you with the DME in between. They deliver it from the mfg to you. I have always picked up my supplies. I guess it depends upon how far you are from the DME.

[Dreamingofsleep]

Hi Missy
I am new here so really still learning. I will say though that I understand why you feel frustrated. You are the one who has to wear the mask, and be comfortable as possible. It's hard enough having to learn to use a CPAP. I am sorry she wasn't more understanding
(the RT) and that you soon will have mask that works well for you!

Dreamingofsleep

[cosmo]

Could you go back there with your mask and ask for some guidance in fitting?

[Missyb0o]

I think I was just aggravated that her tone was so nasty. I am new to this whole thing. What irritates me the most is I cannot understand why these companies feel that since they send an RT out to your home and spend at least an hour, that whatever mask they give you should work fine and be the best thing for you. I am a side sleeper. I always have been. She told me upon the fitting that with a CPAP, I will never be able to sleep on my side again and get used to sleeping on my back. Then to have the nerve to suggest that no one but her knows what a CPAP is and what it is supposed to do. I am finding this site to be a great relief. I can read threads of questions, products, problems, and even success stories. It makes me feel better about the situation. I was always told knowledge is key with anything. I am learning. If the goal of CPAP for me is to open airways and be able to sleep, I do not feel that it is too much to ask for more than 3 hours a night. I have adjusted to the headgear after loosening it. The pain and bruising has stopped. The high pressure at 18 does not seem to bother me much. When I sleep, I sleep very well and even dream- which I have not done in years. I never made it past a twilight type sleep before. Sleeping but very aware of everything around me. I did some legwork first before I even called. I checked out their website and saw that they carry the ComfortGel Full Face which others have found helpful (they started with the same one I have currently and switched because of leaking air seals) The problem is any little adjustment while I am sleeping, breaks the seal. Happens every night after 3 hours. I wake up, try to reseal, end up taking the thing off, turning off the machine, try to put it back on, turn the machine back on, and then after 30 mins or so I am wide awake with no seal at all. She may have fitted it to me but when she had it so tight it wouldn't inflate fully, cause severe pain and bruising, and an outward miserable night, I do not see how that is considered correct. The supply company is over an hour away. My RT has patients all over the state. She told me that even when I order supplies, the manufacturer would ship directly or she would bring it to me since I am over an hour from every hub. I just felt that I had inconvenienced her because she was convinced my mask was a perfect fit for me. Now the doctor is mad because I still can't go beyond 3 hours with the thing.


Missy

[simplyme]

She called back and left me a nasty message about how she could order it for me but she fitted the one I have now and it fit fine. She also went on to say that I should not be listening to anyone here because I have to do what is best for me and all of the people on here are unique and probably not even on the same high pressure

Wow!! That is one self confident RT! I'm betting she is not a cpap user, or she would know that a mask fitting and a mask actually working on someone are two very different things...
She is absolutely right about listening to people on here! After all she doesn't want you to know too much, then you will be demanding better treatment options... we can't have that can we...
I wonder if there are any other DME providers around you? Try checking the local services link at the top of page, looks like a little suitcase.. .

I am a side sleeper. I always have been. She told me upon the fitting that with a CPAP, I will never be able to sleep on my side again and get used to sleeping on my back.

I too am a side sleeper, and have been doing so every night I have been on therapy... actually I am a 'turn over all night' sleeper. I have used nasal pillows/cushions with quite a bit of success for side sleeping, but at higher pressure they were hard to breath out against. I think if one has a bipap/vpap with lowered exhale pressure they could work. But even with different nasal and full face masks I have always been able to sleep on my side or back. The mask can be annoying but you can figure out ways to help, like foam pillows with edge cut outs, they actually make pillows especially for cpap but they can be expensive.
A lot of people have commented here and elsewhere that side sleeping is better for some because it reduces the amount that their throat and airways collapse and close of...
Over all you could be that RT's worst nightmare or her best teacher, it all depends on how much she is or is not willing to learn about reality!

[RogerSC]

A lot of people have commented here and elsewhere that side sleeping is better for some because it reduces the amount that their throat and airways collapse and close of...
Over all you could be that RT's worst nightmare or her best teacher, it all depends on how much she is or is not willing to learn about reality!

Sounds like this RT already knows all they need to know, and their job is to convince you of that...don't know how many more chances I'd give this one to listen. When you have all the answers, you don't have to listen, I guess...You really need someone who's willing to work with you, not just tell you what to do, that's what I'm looking for, anyways.

[Madalot]

I am a side sleeper. I always have been. She told me upon the fitting that with a CPAP, I will never be able to sleep on my side again and get used to sleeping on my back.

This has got to be one of the stupidest things I've ever heard, with nobody on here has as high a pressure as you being a close second.

I am a side sleeper as well and have no problems with my mask. As a matter of fact, it's better on my side than on my back.

Your RT sounds an awful lot like my first one. She was new at this and her boss even told me that she could learn a lot from me *IF* she would listen (she didn't). But to her credit, she WAS very good about mask fit and helped me out tremendously on that front.

I'm sorry you are having such an experience. Unfortunately, it's pretty common.

[khauser]

Sounds like this RT already knows all they need to know, and their job is to convince you of that...don't know how many more chances I'd give this one to listen.

None. You need a professional, not a defensive clerk. Two choices in my opinion:
1) look for a better local dme, but those are very few and far between.
2) be your own dme and order online.

There are insurance consequences but if you have a high co-pay or deductible it may work out in your favor.

[Missyb0o]

My sleep doc is now involved and they are none to happy with my treatment from this service. Still have nor heard from the RT today and I have been awake since 4:13 am EST. It is a shame because if I really like my machine. It is super quiet, easy to adjust the humidity levels, and that SenseAwake function is wonderful! If I have to go with a new company, do I have to return the CPAP? Or just get supplies and such from the new place? I am usually not a confrontational person. I hate conflict! But I am not one to be railroaded either- especially when I know there are other options and better things available. We now live in the middle of nowhere instead of the city. We had to move with my husband's job. I never thought there would be so many things that I do not like about this place. All of my specialists (I had the choice between only 2 in each category) are over an hour away in a completely different city. I know there is one other DME but I may just purchase what I need or want online. My copay is not bad involving the insurance but if I have this much hassle with the start up, I am not sure I want to deal with that every 3 months.



Missy

[Pugsy]

You don't have to give up the machine if you want to use another DME for masks or other supplies.
People do it all the time.
Just find another DME you like (that works with your insurance if you have those requirements) and get masks from them. Mask/supply purchase isn't tied to machine purchase at all.

If you moved halfway across the country you wouldn't be expected to continue getting service for masks from the original DME who supplied the machine and you wouldn't be expected to return that machine and get another machine from a new DME.
You would just quit buying masks and supplies from the first DME and buy them somewhere local more convenient to you.

You can buy masks from anyone you want....just get a copy of the RX to whoever you want to use. They will be glad to sell you a mask and they won't care you never bought a machine from them.

[StuUnderPressure]

Now that you have this DME on the defensive (i.e. answering to the Sleep Doctor), they may turn out to be at least acceptable. They will not want to piss you off again!

If you get recomendations from someone for a specific GOOD DME, then change.

But, why get rid of the current one once you have them trained?

[PST]

I am a side sleeper. I always have been. She told me upon the fitting that with a CPAP, I will never be able to sleep on my side again and get used to sleeping on my back.

This has got to be one of the stupidest things I've ever heard, with nobody on here has as high a pressure as you being a close second.

I am a side sleeper as well and have no problems with my mask. As a matter of fact, it's better on my side than on my back.

Your RT sounds an awful lot like my first one. She was new at this and her boss even told me that she could learn a lot from me *IF* she would listen (she didn't). But to her credit, she WAS very good about mask fit and helped me out tremendously on that front.

I'm sorry you are having such an experience. Unfortunately, it's pretty common.

The worst thing about that advice is that for most people apnea events are fewer when they sleep on their sides, so if someone is comfortable that way they should be encouraged. I had a good experience with my doctor. I told him that I had become a very reliable side sleeper, and asked him to review my sleep study and recommend a pressure that that would work well as long as I kept off my back. He did, allowing me to reduce my pressure, and self-monitoring showed that I continued to have great results. The upshot was good therapy with fewer leaks because of my lower pressure.