MakeSleepAPriority

Ruby, Can you expand on your comment about not being comfortable having your husband see you with the CPAP on? That would be good insight for providers. Some people may just refuse CPAP for vague reasons without realizing that is the core problem. Solve that and maybe others could succeed with therapy.

Great responses. Let's keep the discussion going Take a look at the questions in post #5. How would you answer them? It's great to have responses from both patients and providers AND some who are both. I have one more question to add. This one is for providers.

1) How hard is it to keep up with technology?

make that 2 questions

2) Have you been able to learn the technology well enough to personalize therapy for all your patients and find the time to do it?

Thanks Joe. As I read your story I was thinking many sleep professionals site similar concerns about their patients because even if they recognize, study and report a high AHI based on respiratory event related arousals (UARS) there hasn't been enough evidence to enable the medical community to formulate treatment protocols or the third party payers to reimburse for treatment. This is where an outcomes network like MyApnea can help. If there are many, many "Joes" out there, their stories can attract the attention of researchers to survey them for more information and provide the evidence needed.

I challenge all forum readers to actively encourage their friends, relatives and acquaintances to join MyApnea so your voice gets heard. Encourage your doctors to help their patients learn about it too. As more and more people join, the doctors will eventually be able to get the education, protocols and reimbursement needed to better serve their patients. And patients won't have to struggle so long. That's what I call a WIN-WIN !

Great comments everyone. Agree, don't give up. The benefits down the road far outweigh the "newbie" challenges. I have some outcomes questions for all of you related to the comment about having a buddy.

1. How much help have you gotten from your healthcare providers...regular doctor, sleep doctor & staff, CPAP provider staff?

2. What were the most meaningful & helpful interactions and advice you received?

3. Where have you gotten the most support?

Thanks Joe. Your story is one similar to so many in the MyApnea network. Why does it take so long to recognize sleep apnea AND realize fixing it can change one's life (even among members of the medical community)? Here is a link to the magazine site where there is an intro to the article: http://discovermagazine.com/2015/april/17-wake-up-call

Sleep is jumping squarely into the public health realm this month with an article in Reader's Digest too. Sounding the Alarm on SLEEP. Check it out: http://www.rd.com/health/conditions/america-sleep-crisis/

Welcome to MyApnea.org. Park Nicollet has a wonderful program. I don't know how close they are but they might be able to give you some guidance. Check their website for contact information: http://www.parknicollet.com/Medical-Services/Sleep-Disorders/Care-Team. Also check the American sleep Apnea Association: http://www.sleepapnea.org/support/a.w.a.k.e.

You might want to search some of the other forums for conversations about surgeries and tracheostomy. If you post specific questions readers answer. You can also propose a research question about these therapies in the "Rank the Research" section.

Agree. I think we are both saying the same thing. I was just saying part of being an educated patient is to clearly understand the risks and that is hard to do when the whole reason for having to self adjust is that some medical professionals are not providing the guidance and education needed.

One of the goals of this research network is to create a pool of information to allow researchers to identify better individualized protocols for diagnosis and treatment of sleep apnea and therefor achieve better outcomes. The more people in the pool the stronger the evidence of what is needed.

Well said Daria. One comment from someone who has been treated for sleep apnea and a professional who educates other professionals.....you are right that CPAP is not without risks and the more complex devices that deliver AutoPAP, BiLevel, ServoVentilation and Assured Volume and other types of ventilation also have risks. The risks are more related to inadequate therapy than mortal danger but in some cases inadequate or excessive therapy can cause dangerous health conditions already present to become worse. It is not a good idea to make changes to therapy without collaboration with those intimately familiar with the individual's health condition(s) and the operating principles of the therapeutic equipment. If that isn't available, changing providers is always an option.

By identifying the need for better education, collaboration and communications we can improve the outcomes for sleep apnea sufferers. I would encourage everyone in the forums to be sure to complete the questionnaires posted here now and those they receive in the future via MyApnea.org . That is how large numbers of people can have a voice to improve their care and outcomes...............including better collaboration and communication with the healthcare community and more importantly HOW to accomplish it..

Welcome to MyApnea 159710. Thank you for telling your story. Please make sure you have completed all of the surveys. If there are similar issues reported, researchers may want to delve into the reasons why and find solutions. For instance follow-up treatment is paid for with some disease states but not others. Are outcomes better in ones where there is paid follow-up? That what patient centered outcomes networks are for. Regarding your mother, search on CPAP liners, you may find an option to help her. Encourage her to sign up and complete the surveys too. That will help to find out just how prevalent allergies to the masks are. That could spur research into other more suitable materials for masks.

Great update, thank you! You are a great example of understanding that it is important to take the time to learn the WHYs of your barriers before you can deal with the WHAT is available to help. I'm thinking you have had to do that in other aspects of managing your health. Can you comment on the concept of having to compromise with treatment? For instance sleeping on your side may not treat your OSA as well throughout your sleep period as CPAP would but is some therapy is better than no therapy? Do you keep trying the recommended therapy? How important is coach (physician, therapist, family) in this process?

Are there others out there who can comment on these aspects of treating OSA?