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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 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.

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

Post by kfujioka on Tue Aug 19, 2014 9:01 pm

[code][/code]I need support but cannot find it easily where I live. I use Apria Healthcare and they only showed my the machine once and won't help me use it anymore. I use a BiPAP. I cannot seem to use it. Either the pressure is too high Or something else. The air coming out has a puff puff feel to it, not smooth. It is so lonely with this problem. When my family goes to sleep I am in the other room in a twin bed with the head elevated trying to breathe and sleep at the same time which is difficult. I try the. Aching for about 20 minutes but as soon as i nod off I loose my rhythm and gag on the air and take off the mask. When I start to breathe normally it is in opposition to the forced air pattern of the machine. I guess I don't know how to make my body use the air pattern of a machine especially when sleeping. At the sleep study I wore the same mask most of the night. I was wide awake because I had to concentrate on the rhythm of the machine. It was the worst night of my life cause I didn't sleep at all. I practice with the machine during the day so I can actually sleep at night. Even though I have apneas I can sleep some.
I was recently referred to a sleep specialist whom I can see in a month or two cause they are all so booked up.
I cannot get another mask through my healthcare company, Apria even though this mask blows air into my eyes and make a puff puff sensation. I ordered a new mask on Amazon. Air sense P 10 I think is the name of it. I read that it is good for not blowing in your eyes.
This disease is so difficult. Here in Hawaii where I live, they are so backward compared to the mainland. My primary care doctor doesn't know about sleep apnea. I told her the pressure is too high but she won't change it. She just referred me to a sleep specialist which is fine since she doesn't know anything about it,
I just joined this forum today.
I have been reading your posts for the past week.
I was diagnosed with sleep apnea July 20th.

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

Post by OboeVet on Thu Apr 17, 2014 10:06 am

Thank you for sharing! So important to become own advocate & keep trying different machine settings & masks. Never give up! Don

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

Post by Brian OReilly on Wed Apr 16, 2014 1:08 pm

When I was initially diagnosed with OSA, I got the impression that my doctor was not really aware of what he should do? He prescribed cpap immediately but I did not understand the sleep data or what was available.

In doing my initial investigation, I convinced my doctor to let me start with epap which was great for me, especially because I travel so much. Moderate improvements, but my O2 was still lower (85%) than it should be. After much discussion, I went to see a sleep doctor who worked in this area for 20 years and was a patient himself. He suggested some alternate cpap devices, explained ALL the data, explained the impacts of each and suggested a good cpap provider who again was also a cpap user themselves.

This time around the fitting, the usage and my own experience was excellent. I wanted a cpap that was easy to clean and for home use initially and got a Phillips resmed ii. My fitter helped me with masks and was available to answer daily questions and get me comfortable with use. So far everything I picked (or was recommended for me as we went thought this) have worked out great. AHI down from 100 to 2.2, O2 running 95% and sleep time running an average of 7.2 hours. I am not a big one for humidity, but on level 1 it's actually therapeutic and my sinuses feel great (a benefit) I still use epap for travel, but will probably end up getting a nice small cpap unit that can run on batteries and pack in a carryon.

So I think my experience is similar to the positive ones here. You have to be your own advocate, you have to ask lots of questions and you definitely need a support team that understands what you are going through.

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