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Why is it necessary to have a support team?

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Expand view Topic review: Why is it necessary to have a support team?

Re: Why is it necessary to have a support team?

Post by LSAT on Thu Apr 20, 2017 3:49 pm

ICantBreath wrote:Hello Everyone
I'm new to the forum & have had my CPAP since Sept. 2016 but I need a support group. I'm ready to throw my DreamStation in the trash. I have had issues since the beginning and I can't tell you when I dreamed last. I have been through several nasal pillow type masks, I now have a Amara View full face & sometimes it works, but mostly it don't. I have tried mask liners, now I make my own. I have panic smothering attacks with the mask sometimes & then sometimes I'm fine, I also have asthma & a chronic cough. I have a CPAP pillow and a hose cover. I rip the mask off & don't know unless I wake up at night or the next morning. My AHI is over 5 almost every night. I'm trying to get a copy of my sleep study, but at this time I don't have it
I'm in the process of finding a new primary care doctor that hopefully can help with my sleep apnea. Unfortunately, there is only one O2 supplier in my area & I've been waiting well over a month just to get my DreamStation turned to the AUTO setting. I got great support for the first 90 days, until Medicaid paid for the machine. Now I get transferred to Tennessee from my local Colorado office. They refuse to communicate with my doctor or me, unless I call them and the call the doctor. I have never had such problems with any home health company. It's like they speak two different languages. I apologize for my rant, but I had to talk to somebody.

DreamStation; AmaraView Full Face mask, Sleepyhead


It takes about 30 seconds to make that change Request the Clinical Manual at the apnea board. Control your own therapy.
http://apneaboard.com/

Re: Why is it necessary to have a support team?

Post by ICantBreath on Thu Apr 13, 2017 7:44 pm

Hello Everyone
I'm new to the forum & have had my CPAP since Sept. 2016 but I need a support group. I'm ready to throw my DreamStation in the trash. I have had issues since the beginning and I can't tell you when I dreamed last. I have been through several nasal pillow type masks, I now have a Amara View full face & sometimes it works, but mostly it don't. I have tried mask liners, now I make my own. I have panic smothering attacks with the mask sometimes & then sometimes I'm fine, I also have asthma & a chronic cough. I have a CPAP pillow and a hose cover. I rip the mask off & don't know unless I wake up at night or the next morning. My AHI is over 5 almost every night. I'm trying to get a copy of my sleep study, but at this time I don't have it
I'm in the process of finding a new primary care doctor that hopefully can help with my sleep apnea. Unfortunately, there is only one O2 supplier in my area & I've been waiting well over a month just to get my DreamStation turned to the AUTO setting. I got great support for the first 90 days, until Medicaid paid for the machine. Now I get transferred to Tennessee from my local Colorado office. They refuse to communicate with my doctor or me, unless I call them and the call the doctor. I have never had such problems with any home health company. It's like they speak two different languages. I apologize for my rant, but I had to talk to somebody.

DreamStation; AmaraView Full Face mask, Sleepyhead

Re: Why is it necessary to have a support team?

Post by HoseCrusher on Wed Feb 01, 2017 10:56 pm

I believe all you need is the operators manual for your two machines. The manual will instruct you how to adjust settings. These manuals are available on line.

What units do you currently have?

Re: Why is it necessary to have a support team?

Post by RonSchuster99 on Wed Feb 01, 2017 4:48 pm

I have two CPAP machines, had two sleep studies, and had to go to local yokel to "set" the machines to a pressure level, and lock me out of the menu to set the pressure. The mfgrs tell me that I have to run back to the providers to make any adjustments to the machine pressure. Well, they aren't real good at their jobs, because one is set too weak, and one is set very high. I WANT TO BUY A MACHINE AND CONTROL THE SETTINGS MYSELF. I'm a user for over 6 years, and can control the settings better than the dumb ass techs who messed up the two machines I have. Where can I buy a machine ad have full access to the settings and menus?

RonSchuster@Gmail.com

Re: Why is it necessary to have a support team?

Post by tlohse on Mon May 30, 2016 6:05 pm

A support team is very important. You need to have a team that supports you through this disorder other wise you will often fail. I have been a CPAP user since 2013. Im 38 and doing great with my machine. and my sleep doctor and family and DME support me all the way.

Re: Why is it necessary to have a support team?

Post by Roman Hokie on Fri Jan 01, 2016 6:32 am

LSAT wrote:
Call your insurance company and ask which suppliers (DME) are in their network.


Exactly. My new insurance provider has 3 levels of coverage. Affiliated (I work for a hospital), in network (non-affiliated), and out of network. So, I called the insurance company and they report that my Sleep Doc is affiliated (I can look that up on the hospital website) and they weren't sure about the DME because he's not a Doc. So, they had to call him to find out who his distributor is for the hardware. They are listed as being "in network" which is still 100% covered without copay/coinsurance/deductible.

However, they cannot complete a prior authorization with the patient; they have to confer with the DME provider. It's the DME's job to secure their prior authorization (agreement) that the item is covered. So, even if the DME is in the network, the DME will need to secure approval. Generally (and I have to do this at work at times for my own patients), it takes 1-3 days, sometimes as little as 20 minutes from the initiation of the phone call, but voicemails and whatnot..

Re: Why is it necessary to have a support team?

Post by LSAT on Wed Dec 30, 2015 7:40 am

MaskingtheNightAway wrote:From reading the last post, it confirms my suspicions that Sleep Labs and DME's are just in it for the money.

I've got my own equipment and now I'm having trouble finding a DME that will sell me mask's and tanks thru my Employer's Insurance Plan.

There seems to be a code that if you go "Outside" the system or process, no one wants to help you.

Teaching me a lesson, EH?


Call your insurance company and ask which suppliers (DME) are in their network.....By the way....what business is not in it for money?

Re: Why is it necessary to have a support team?

Post by MaskingtheNightAway on Sun Dec 27, 2015 6:24 pm

From reading the last post, it confirms my suspicions that Sleep Labs and DME's are just in it for the money.

I've got my own equipment and now I'm having trouble finding a DME that will sell me mask's and tanks thru my Employer's Insurance Plan.

There seems to be a code that if you go "Outside" the system or process, no one wants to help you.

Teaching me a lesson, EH?

Re: Why is it necessary to have a support team?

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Re: Why is it necessary to have a support team?

Post by arthuranxious on Tue Oct 20, 2015 4:11 pm

I have been on CPAP for over 9 years. When first diagnosed I tried to find a support team, a self help group for people with apnea but there was nothing nearby. When I eventually went to such a group, the people who came were all so much older and sicker than me that I was terrified at the thought that I might soon be in the same boat and I ran from the room. I also envisioned them thinking what is thaat young guy complaining about!
I never saw any significant changes in my life since treatment began but that is probably due to the blessing of never having been chronically tired or sick before treatment.
I also tormented myself with the thought that if I had controlled my overeating I would never have needed the CPAP, but my pulmonologist says the shape of my airways might have made it necessary even if I had not abused my poor body so badly.
My wife uses CPAP as an additional excuse for bedroom inactivity, but she would have found otehr excuses anyway.
But all these aspects of life would have been so much easier if there haad been some support.
I remember how good it felt when my son and daughter-in-law picked me up after 24 hours in the sleep lab, and how awful it was when I had to drive myself home after titration study and got lost wherever I turned from overtiredness....
A support team, teh right support team, could make all the difference.... a supportive partner, a DME rep who cares and takes an interest (rumor has it that they do exist although nearly extinct), a doctor who takes a personal interest and does not just proclaaim that you are feeling SOOOOO SOOOO much better because everyone is so much better on CPAP, a support group.....
And even though I had none of those, I had the chance to talk to intelligent empathic fellow sufferers online, and thanks to that and natural obstinacy have stuck with the program.

Re: Why is it necessary to have a support team?

Post by MsGiggles on Wed Oct 07, 2015 11:13 am

Hello everyone! I am so glad to be here with all you beautiful people! Yes, it is so important to have a support team! A bit of support from family, friends, and even your doctor can go such a long way in general!

I was lucky enough to have two parents (who subsequently both use CPAP machines) consistently reinforced to me how much better life is with being on a CPAP machine versus without being on one. Now, they started on them before all the 'bells and whistle' ones have come about. Technology is a sure blessing! It can only get better! However, they went through a lot of the frustrations with older technology of using CPAP machines (I am sure many of you can relate) and even with such discouragements along the way they still kept a positive attitude and were persistent.

Fast forward, as an adult come to find out I have sleep apnea. Now, I needed a CPAP machine and now I have one. It was such a long road to get one too. I had difficulties with playing the wait game with my VA medical insurance to provide me one. To the point in the end I never recieved one from them. Talk about discouragement! To make a long story short I ended up going through my husband's private insurance and finally I am elated to say I now have my CPAP machine that I was so desperately needing.

I wish I could say everything is just a bed of roses using a CPAP machine. However, that would be a bold face lie! Just like with anything there's annoyances sometimes big, sometimes small, sometimes consistently, and sometimes once in a blue moon sort of thing. Though, I remind myself of the bigger picture. I am first of all blessed to have a CPAP machine when a lot of people who need one can't get one because of finances, lack of insurance, ect. Secondly, I am blessed to start treatment here and now versus 20 years ago (or so) before technology really ironed out a lot of kinks with using a CPAP machine. Finally, setting aside all the bumps in the road with using a CPAP machine overall I am ensuring that by using the CPAP machine I am positively affecting my health and all benefits that stem from such.

My parent's are not around me 24/7, I have no friends who use a CPAP machine, my spouse doesn't use a CPAP machine, and my doctor's exotic, but beautiful accent is very hard for me to understand. However, at the end of the day no matter how much or how little support you have the best support comes from yourself. No matter what, being your own advocate by educating yourself about Sleep Apnea and your CPAP machine is the most reliable. Everything else at the end of the day is just details accompanying it.

If anything, the support I would like to leave to you all is that things can only get better from here! Persistence, optimism, time, and research can set you on a positive path for a better life just hang in there! Be your own advocate!

Re: Why is it necessary to have a support team?

Post by SunnyBeBe on Mon Jun 08, 2015 2:01 pm

I just called my ResMed Rep and asked if I can register with MyAir so I can monitor my progress. She wasn't sure. She said to give it a try and see if it works. (She is monitoring me for insurance purposes.) Doesn't that sound odd? I'm not sure what information it will provide me, but I'm going to give it a shot. Do you know if they charge a fee to help give you support there?

Re: Why is it necessary to have a support team?

Post by shaner on Mon Apr 13, 2015 7:55 pm

The title of this thread is bang on! I don't have any support at all. I've never had someone explain anything to me. I've been on my own since day 1. I was diagnosed 5 years ago and only in the last 48 hours have I truly and finally understood everything I need to know to properly manage my sleep apnea.

at first I had a CPAP machine that didn't collect any data at all. I struggled and just never felt like it was working right. I eventually got an APAP machine that tracked data, but didn't know how to get the data off of it without buying an expensive data module. 2 days ago I finally learned how to get the data off my machine via the Smart code, only to realize that over the last 90 days I had a leak percentage of over 30...not good. I switched to nasal pillows the last 2 nights and my leak percentage is now 0. I have just discovered that my required pressure isn't as high as I thought it was. I'm finally able to track all the necessary data and make adjustments as needed. It took 5 years, but I finally got it.

It's a shame I didn't have a support team to help me through this 5 years ago. It's not complicated stuff, but it's tough to figure it all out on your own. It's not like it's just common sense.

Re: Why is it necessary to have a support team?

Post by Furielazriel on Wed Dec 03, 2014 9:33 pm

I was diagnosed with sleep apnea a little over a year ago now. I used my cpap machine most of the time for about the first six months, Then I had lots of trouble with sinus and ear problems and gave up on the treatment. I have since started using my machine again and find i'm sleeping like a baby once more. I am nervous because I stopped using it and when I take my card in to gt read I will have some explaining to do and my machine is a rental threw medicare. I wonder if I find myself having to buy a machine via ebay is there a way I can get it programmed for my air pressure? And how would I know what my pressure is? Thanks for taking the time to listen.. I sure can use the support and advise. My husband thinks im being paranoid about loosing it, But when you wake up feeling like your being smothered and this magic box stops that you tend to get a lil jumpy about it.

Re: Why is it necessary to have a support team?

Post by CmcB73 on Sun Oct 19, 2014 8:07 am

I am so glad I found this site. I have used a CPAP for 5+ years. I have no issue with using the CPAP - I can really feel the difference if I don't use it. After my initial sleep study and receipt of my machine, I've been on my own. The company that set me up with my machine did a great job fitting me and teaching me the ins and outs, possible problems, etc. One month after receiving it, they had a forum for cleaning, etc. which I went to (coincidence that it was just a month after receiving machine). I received additional supplies once, then they went out of business. I drove to their location where there was a sign on the door. It recommended another company. By this time, I had no insurance but I drove to this new company. I was told they actually didn't sell directly to the public, but a nice woman sold me some supplies - and never cashed my check, by the way. With much going on in my life at the time, my CPAP problem got put on the back burner, and I went too long without getting new supplies. When I got insurance again, I found out my doctor had retired but found a new doctor in the same practice. Nice man, but I don't feel listened too. I had gained weight and felt like I wasn't getting enough air. He has never done another sleep study. The new DME company does not seem to know their product like the first one. I have a Nuance mask, and the nose pillows just seem to collapse and flatten on my nose. They are definitely too wide for my nostrils and possibly too big as well, but the DME company has no answer for me. Many nights I just rip the mask off as I can breathe better without it. In frustration, I found online a way to adjust the air pressure on my machine. I don't think that's the issue, I think it's really the mask and nose pillows that's the problem. I am now searching for a new DME company, but I think they are all pretty much the same. I am so frustrated, I just want to chuck it all, but fear the health consequences. I appreciated the suggestion of a local support group and am going to check that out. Thank you all.

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