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Why is it necessary to have a support team?

PostPosted: Mon Feb 01, 2010 9:21 am
by carolyngoodman
Q: What is a common element that many CPAP users overlook when they are diagnosed with Sleep Apnea?

A: Building A Support Team

I know this is preaching to the choir here, however this is an article from the old "Our Wisdom" written by Mile High Sleeper, which I think is good to bring up on occasion especially for the people new to Sleep Apnea who browse this site.

If you are like me, sometimes the people closest to you are the people who it is hardest to share information with. Sometimes it helps coming from another source. This is a great article to send to those people you know who are just starting out, who think they might have sleep apnea, or those who are having frustrations with their therapy.

Successfully treating sleep apnea requires some lifestyle adjustments. Change is hard. Having a team of people who have been there, and who will be there in the future to help support you through it, is the cornerstone to successful treatment.

If you have insight you would like to add to the article, please feel free to do so by clicking the edit button. If you don't see an edit button, that is because you have not logged into the Wiki yet. It uses the same log in as your CPAPtalk log in. Once you log in, you will see the "edit" button.

You can view the article here:

wiki/index.php/Building_Your_CPAP_Support_Team

- Carolyn

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

PostPosted: Mon Feb 01, 2010 9:39 am
by Cosette
Thank you Carolyn, the support has been very helpful.

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

PostPosted: Mon Feb 01, 2010 12:36 pm
by carolyngoodman
Cosette,

I am glad you find this place supportive and helpful. It is all because of your fellow CPAPtalkers!

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

PostPosted: Fri May 21, 2010 5:24 pm
by waltschwager
I have been using and avoiding my cpap for seven years. For four of those I had no support and I found the equipment was more trouble than it was worth, so it sat. Then I had to be cared for by a pulmanologist. He had two more sleep studies (hate them) conducted and has spent the past three years helping me to adjust to the cpap and the 24/7 oxygen that I am tethered to. I don't tollerate things on my face. I put the mask on and off it goes when I am asleep. I am now getting about four or more hours using a cpap every night and usage is increasing now that I have a second unit stationed at the recliner.

Support is very, very important. Problem is that on the local level there is very little except for my doctor who I see now about ever right months. I am disabled and have other health problems but the cpap is one of the things that I know I need but still don't like.

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

PostPosted: Tue Jun 22, 2010 8:59 am
by sister
hi! i am new to the website,been on c-pap 6 months now and despertly need a support group! i tried to use the c-pap for 15 months in 2006 and 2007.was unable to because i have severe allergies. i had the surgery,[uppp] in 2007] and found out just this past jan. that my apnea is back, so i am trying with all i have to use the machine. i am having a lot of problems, the latest one is my AHI is still averging 17.5. i have finally gotten to the point that i can sleep some,but i sure wish i could get the AHI to lower some. thanks!

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

PostPosted: Mon Jun 28, 2010 9:03 am
by sheepdog
For me the closest I have seen to a real support group is this forum. My Dr writes the orders for studies and equipment but knows little. The DME pushes what they want to sell then disappears unless you are willing to spend money.

Very few real places understand the cpap wearer like cpap.com and cptalk. It could be a lot better locally but until it ever is Im glad this place is here for me.

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

PostPosted: Wed Jul 07, 2010 3:32 pm
by Sharon1225
My doctor is very good. I'm sure if I had more access to him, he could answer all questions. I get just 15 or 20 minutes about 3 times a year. He's even tried to establish a support group among his patients, probably for that very reason.

I wasn't really looking for a support group when I stumbled on this, but I've found some valuable information here.

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

PostPosted: Sat Jul 17, 2010 5:05 am
by RN Ricky
You all are very correct in giving thumbs up to this forum. My ENT doc does not know much about CPAP, just surgery to try and fix the apnea. No physician can know everything even in their specialty. I have learned so much here that it is very reassuring knowing that one forum folk will know the answer OR know someone who does. Most folks offer the usual "disclaimer" but they do actually know more than some licensed professionals.
Stick with this and you will do well, with CPAPTALK.

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

PostPosted: Mon Jul 19, 2010 7:09 pm
by sleepnationtv
I do think it is important to build a good support group because the first month or so of using a CPAP machine can be difficult. Part of the problem is the lack of education before starting therapy with a CPAP machine. There can be huge differences between the machines and the masks that a patient can receive. New patients have no idea what to look for to ensure that they are getting the best equipment and service, a good support group helps to go into the initial CPAP setup with knowledge. Online support groups are great also, Sleep Nation TV, :D www{dot}sleepnation{dot}tv :D is one of the only video support group communities, check it out.

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

PostPosted: Tue Aug 31, 2010 12:57 pm
by stephanie13724
It is EXTREMELY important to have a support team, especially in the beginning. I would advise that you search online for a local CPAP Support group where you can go and meet others who are dealing with the same struggles and successes you are as well as have face time to talk with sleep professionals. A place to start is on the American Sleep Apnea Association's website. They are the governing body of the A.W.A.K.E. CPAP Support Groups. I am the Coordinator of the North Texas A.W.A.K.E. CPAP Support group in Richardson Texas. We meet quarterly at the Methodist Richardson MEdical Center's conference center. We have a drawing for CPAP related accessories and prizes, an educational presentation regarding treatment, compliance, sleep apnea, etc, small group discussions, as well as a detailed mask and equipment inspection by local DME company representatives. The event is free and open to the public who have either been diagnosed with sleep apnea (regardless if they are currently compliant with the treatment or not, their friends & family (support system), and for anyone who has questions about sleep apnea. Our next event will be Thursday, September 9, 2010 at 6:30pm. We have had anywhere from 50-60 people attend our events and look forward to seeing this community grow.

Please let me know if you have any questions and I am always happy to help as much as I can. Making sure you have a support team can make or break your CPAP treatment experience.

- stephanie13724
[email protected]

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

PostPosted: Tue Sep 14, 2010 11:50 am
by timeout
[quote][/quote]i have not been able to adjust to the cpap machine. I have worked through several problems but still have trouble with it blowing me up. I feel like i will explode in the morning and have to expel a lot of air before I feel better. Does anyone have any suggestions?

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

PostPosted: Wed Nov 10, 2010 9:54 am
by alenpiter
# The sleep lab then obtains the authorization from the insurance company to bill your insurance for the study
# The sleep lab will call you to schedule a time to come in for a consulatation

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

PostPosted: Sun Nov 14, 2010 7:06 pm
by RipVW
Great article! Thanks for sharing this, Carolyn!

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

PostPosted: Sat Dec 04, 2010 5:43 am
by aeonswife
I am blessed in where I live. When I was diagnosed with OSA two weeks ago, and told I would require a CPAP machine, it was by a dedicated sleep doc. This is what he does, all the time. He has a dedicated team, and they guide you through the first few months, even making house calls as needed.
It has been hard telling my family. After all the health problems I have had, mulitple hospitalizations and many many tests, the opinion of my family seems to be "that's it?". As if OSA isn't a big deal. But so far, they have tried to be supportive. Most of them seem relieved!

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

PostPosted: Mon Dec 13, 2010 3:26 pm
by AMUW
Good initiative and good thread!

I get the impression that "Support Team" means different things to different people on various medical forums ... including the context on this thread. Initially I thought you meant family emotional support.
To me good support means that the multidisciplinary and multi-company talents are properly coordinated, with the patient being an active partner. It is his / her long term (chronic) problem, so it helps to become as knowledgeable as one can.

An ideal support situation is being preached by Dr. Ralph Pasqualy (Sleep Medicine Associates at Swedish MC in Seattle) in his relatively layman book:
Snoring and Sleep Apnea (4ed 2008 on Google Books).

Many of us could talk about "sub-optimal" situations. A few examples:
- an adversarial situation: an excessively emotional patient, or a stressed out doctor trying to cram all decisions into a short billable event
- disciplines not being on the same page or not sharing data to interpret the data all the way from airways to brain control: sleep doctor, pulmonogist, ENT (for nose or throat), neurologist, dentist
- what happens to home visits once the DME got paid by insurance?
- PAP hw manufacturers not providing data in a standardized format; hence incompatible to transfer from one computer to another; this aspect reminds me of US cell phone companies fighting for market share via phone locking