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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 Bertha de Blues on Tue Sep 05, 2017 6:10 pm

WeavingDreamewaiting wrote:I have been waiting for 2 or three weeks to get activated how do I contact an administrator to find out when this will happen?


Scroll to the top of the page and click on "Forum Updates." You'll find the answer there. We just have to be patient.

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

Post by WeavingDreamewaiting on Tue Sep 05, 2017 5:08 am

I have been waiting for 2 or three weeks to get activated how do I contact an administrator to find out when this will happen?

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

Post by HannaJ on Sun May 14, 2017 2:30 am

For ICan'tBreathe: I sympathize with your difficulties. Isn't Medicaid administered by the state? Why would you be referred to a different state? That's worth looking into.

Social programs like Medicare and Medicaid can be roadblocks. My sister needed new filters for her machine, just as she was transitioning to Medicare. She went two months without therapy because of all of the miscommunications she experienced, as well as red tape. She cares for my very elderly Mom around the clock, and never gets a full night's sleep. Medicare was giving her trouble about covering her needs because she wasn't compliant enough! As if she had a choice.

I don't find it particularly supportive to say things like "aren't all businesses in it for the money." What the poster obviously meant was that these businesses that are supposed to care for sick people are in it **only** or mainly for the money. There's nothing wrong with making a profit, but an ethical health care business needs to care about its customers. People who care only about money should find some other kind of business to run.

Saying that a good support team is essential can be very discouraging for the many people who are not able to find or form one. It's also discouraging to realize that you are on your own and responsible for managing everything from dealing with healthcare providers to researching your medical conditions to shopping for and trying out equipment. It's very hard to find the time, energy, and resources to do it all. Under the guise of encouraging people to be "informed consumers," care providers shunt work onto sick people, not all of whom have the education or resources to read complicated medical and pharmaceutical research, or the assertiveness to demand what they deserve from providers. A forum like this is very important in helping people in such situations.

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

Post by HannaJ on Sat May 13, 2017 2:03 am

Interesting thread. When I see "support team" I think of professionals, but in our current health care environment, putting together a team of people with enough time, frequent enough availability for appointments, sufficient skill, and insurance coverage can present major obstacles. I live alone; I don't have many close friends, and those that I do have are very busy. My sister does CPAP, so that is good, but she lives 3000 mi. away. Because I know about apnea and CPAP, I knew I'd have to adjust to the machine. I've had some problems with that, but I think they are surmountable. My biggest problems have been with the health industrial complex:

1) I am insured by an HMO that approves treatment only by physicians in the local network, or selected distant locations. I had to fight to get a visit with a top expert clinician in Los Angeles approved.
2) My local specialist is hard to see, because he wears several hats. You can't just call and schedule an appointment in the next couple weeks. The next couple months counts as success.
3) Communicating with the clinic my sleep specialist works with is a huge nuisance. Call, go through several menus, maybe talk to a machine, wait and hope for a call back. Or talk to PA, who garbles your message to the doctor. Sort it all out with another call--menus, messages, wait, more garble.
4) Coordination among sleep specialist, sleep study center, and equipment supply store is cumbersome, and involves yet more wait times for appointments and approvals from the HMO/physician group, and more garble.
5) The doctors themselves can be a problem. My sleep specialist is great, but my pulmonologist (I started there because I had heart-related breathing problems) can be rather blasé. After a sleep study that continued into the next day, he blithely informed me that I had REM behavior disorder, and sort of left it at that. Upon web research, I learned to my terror that, of people with full-on RBD, 45% experience onset of a serious neurodegenerative disorder within 5 years, and 60% within ten years. The medical literature emphasizes that this is correlation without clear causation, but those stats scared me out of my socks. We're talking Parkinson's disease, MS, multiple system atrophy (don't ever read about it), and such like. As a woman, I was less likely to have full RBD, but my age (early 60s) is correct, and the sleep study showed lack of atonia during REM sleep. Hence the fight to see the guy in LA.

I had my first sleep studies last June; I started CPAP in July; it has taken me a year to get to the point of seeing the REM specialist in LA. Even that was disheartening. When I called to set up the appointment, I was told that there was no guarantee I would see the specialist; I might see one of his residents (i.e., trainee doctors). After all that work getting the visit approved!! Without approval, a visit would cost between $600 and $1500 (at a state institution, not a private clinic). Finally, I secured a June 6 appointment. But, lo! They made that appointment without checking with the doctor. Pushed back to June 26. I had to impress upon several people that ***my brain was on the line here***. This wasn't poison oak or a head cold.

I have very good health coverage through my job; probably better than very large numbers of people. So I shudder to think of what less-fortunate people have to go through. All this is/was extremely discouraging and infuriating. And, of course, I go through it all in a state of sleep deprivation.

Sorry to write this long diatribe, but I think it's important that people share stories of dealing with the medical industrial complex, share tips, and give each other emotional support. I've found this forum very practical so far, but also a bit on the emotionally chilly side. What I would like to tell people who are struggling with getting the care they need is this: Stick up for yourself! Keep calling. Go as far up the chain of command as you can. Use all the resources your providers make available, e.g., patient portals you can use to send messages to your doctor between visits. Use the internet for research, but take what you find with a grain of salt and vet your sources carefully (many medical studies reported in journals are financed by pharmaceutical companies or other corporations in the health care business). The lower ranks of the medical practices I use probably hate me. But, hell, I'm going to be seen by the man who literally wrote the book. And I did that by sticking up for myself and not giving up.

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!

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