Why is it necessary to have a support team?

[Pugsy]

You have posted up in an area of the forum where mainly there is only stuff that is read only.
So a lot of members will miss your problem.
You will get more help if you created a new topic of your own so that people can help you better and your problem won't get lost up here in this thread. It is best if you have your own thread with your specific problems.
If your mask is a problem then get with the DME who supplied your mask and machine and tell them you want to try another mask or get some much needed help with the one you have.
Take a look at my signature line for information about the software that you can use.
Actually with the 60 series you are limited to EncoreBasic right now but some examples of the reports are shown.
Send me a private message and I will help you with the software.

[bodyroc]

Thank you Carolyn,

I am new to all this and I really have felt that I'm all alone in it. I got a sleep study done then the second one done a few days later and now I'm on a machine to help me breathe when I sleep. All of this in less than a week.
No class or training to truly understand the equipment. They showed me 1 time packed it up and sent he home with it. Kinda crazy.

This forum is helping me a lot and I am very thankful for it.

[Erinome]

For those without health insurance, having even a single doctor, let alone a "support team," is already difficult enough. I haven't seen my sleep doctor in over a year. I haven't seen my GP in months. I haven't had a sleep test for over 3 years. I use a CPAP machine, but still have lots of sleep issues, with many more nights of bad sleep than good sleep -- I just try to get by as best I can on my own.

What are the uninsured supposed to do without one of these support teams?

E

[SleepWellCPAP]

Hello All!

Hope everyone is doing well! I'm actually going to cover this when we get to CPAP Basics - 7, but this topic of "support team", is in fact an element to success that anyone trying to use a device needs to be aware of. In a way, we are all "coaches". Everyone from your PCP, to your sleep physician, to your dme provider and back to your PCP, are all in the loop and on the hook, sort of speak.

The reason a support team is so important is because using a CPAP is not easy, and just like the previous post about fitness, folks tend to throw in the towel. If pressure therapy was easy, this blog would be one page instead of thousands. When someone that I have instructed calls me back to tell me how well they are doing, I absolutely jump up and down for them. Not because I've never heard that, but because I want them to know, without question, that I admire what they are doing. If everyone in the "loop" did that, fewer people would give up, and quite simply, we would all be better off.

I wonder if the third mate on the Exon Valdez was a sleep apneic? I think many would have volunteered to be on that support team.

Jim

[49er]

For those without health insurance, having even a single doctor, let alone a "support team," is already difficult enough. I haven't seen my sleep doctor in over a year. I haven't seen my GP in months. I haven't had a sleep test for over 3 years. I use a CPAP machine, but still have lots of sleep issues, with many more nights of bad sleep than good sleep -- I just try to get by as best I can on my own.

What are the uninsured supposed to do without one of these support teams?

E

Hi Erinome,

As one who is also uninsured, I am in a similar position. Fortunately, for me, this forum is a great support team.

Also, feel free to PM me if you need support regarding an issue.

49er

[Mycopsycho]

When I first started my cpap therapy in 2009, I had a lot of questions and concerns. I wasn't getting answers from my DME provider since all they wanted to do was push supplies at me. At the time I didn't have a regular sleep doctor either but relied on Centura's unreachable RTs. I had a few friends who had OSA and they were helpful up to a point. Then I discovered this forum and I suddenly had a place I could come to to find answers to my many questions. I learned about equipment, affect of the therapy on my sinuses, setting humidifier levels, about software that I could get to help me monitor my cpap therapy, and many other things. When I finally did start seeing a sleep doctor, I came to him as an informed patient so that we could have an intelligent and productive discussion about my therapy. Bottom line is that support from a forum such as this...and there are others as well...is essential for OSA patients particularly in the early stages of therapy.

[Brian OReilly]

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.

[OboeVet]

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

[kfujioka]

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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.

[CmcB73]

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.

[Furielazriel]

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.

[shaner]

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.

[SunnyBeBe]

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?

[MsGiggles]

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!

[arthuranxious]

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.