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Well said. Thank you!
We see posts from sleep doctors and technologist who say they had apnea for many years before seeking treatment in spite of encouragement from their peers. Why did they wait so long? What finally triggered action? How many sleep professionals suspect they have or are treated for sleep apnea? Is that different from the general population? Why?
It would be interesting also to start a dialog to see what effect suspecting they have sleep apnea or having sleep apnea has on how they interact with patients. Does it give one a different perspective? If so, how do they use that to help patients?
You have a great understanding of your apnea. Does that help you make the extra effort to adhere to therapy?
Thank you for volunteering Ruby. This site is a chance for patients to help the medical community learn and understand what is important to them. Outcomes research as I understand it helps to find the every day life things that are important to help us get the best outcome from our medical care. Said another way, outcomes research helps us learn what barriers there are and what is important to us that encourages us to do what we need to in order to get the results serious medical research says is important to be and stay healthy.
Ruby you bring up some good points. We probably all agree that when a home care company treats you well it's a good thing and has a positive impact on your outcomes but how does it make you feel towards your therapy when you have one that doesn't help or that is annoying? Might be an interesting question.
A number of the companies may have automatic billing systems that can't be told "Ruby always pays as soon as she gets her EOB so don't send her payment notices for at least xxx days". If they realized the impact, they might fix it. What do you all in the forum think? How does "being bugged" make you feel towards the company vs towards your therapy?
Hi Puffer and 154370...You both have central apnea but the cause of it may be different. One of the challenges researchers have is figuring out how to match the cause with the central breathing patterns they see in a sleep study. There are at least 3 distinctly different PAP units that treat different types of "central" apnea breathing patterns. What works well for Puffer may not be the solution for 154370. Sometimes after a few weeks on CPAP to treat the obstructive apnea, the central goes away. This is why it will be important to compare all the users here on the site with central apnea, their histories, treatment and even breathing patterns some day maybe. You might be asked to take part in some surveys specific to central sleep apnea. You can also think about what is important to you for your outcomes and formulate a question for researchers to ask that would help you achieve that perfect outcome. It's kind of different from the research you are used to seeing but exciting don't you think?
How did you come out with your sleep doctor appointment Puffer?
Agree with you Rohit. If we had 50,000 users and someone like Daria Vader compared herself with others who were boarderline on home studies a lot of questions would emerge because some would have good outcomes and some not. Researchers could look at that information and formulate many questions. At this site it's all about the "patient". If the patient's needs haven't been met then it's not a good outcome and questions need to be asked. If we had 50,000 users that the researchers asked questions, their answers would become very influential to drive better protocols based on that information. How exciting is that!
The forums here are a little different from sites that are not intended for research. The goal is to find common things that help users get the best outcomes treating their apnea. Or maybe also the things that are different between those who succeed and those who fail to get the best outcomes. One question that hasn't been answered well in the literature yet is "what do pepole with sleep apnea see as a good outcome?" "Is it different from what the medical community thinks?"
Member 677, you started this section, what would your ideal outcome be if you three wishes related to treating your apnea? What is most important? Is it related to your overall health, quality of life issues, sleep, daytime function, longevity? How about the others in the forum?
Welcome! Your story is similar to some that have been posted. This is an outcomes research site. The goal from looking at the stories is to come up with questions common to them that haven't been asked or adequately answered. There have been posts questioning the information on the LED screen or the function of a PAP unit. A question might be one like do PAP users who know and understand what the LED displays mean tend to use their PAP more daily and longer overall? Do those people tend to notify their sleep professionals sooner when there is a problem? Another question might be "where do PAP users get the most useful information about their therapy?"
Troubleshooting for a specific problem is not the intent of this site or the forums. Because your settings and how the PAP unit operates with your breathing pattern is unique to you, your healthcare team is your best resource. Sometimes the home care company your unit came from is a great resource because they would know if there was a common operational issue with a specific PAP therapy or PAP unit. They also look at a ton of downloads and can recognize a unit is malfunctioning or needs a setting change to improve your therapy. If you want to just see if others out there have a solution for you, there are forums intended for that kind of conversation. You are right in that the research nature of this site does not allow exchange of specific medical advice. The American Sleep Apnea Association has a forum that has just been reconstructed. Give it a try at WWW.sleepapnea.org. Please keep the folks here informed of your journey maintaining treatment of your apnea. Welcome to MyApnea!
Welcome! You have a compelling story.....I think it might be noticed more if it were posted in the Central/mixed apnea topic. You can copy and paste your post there using the "comment" feature at the bottom of the posts or you can leave it here and see if it gets noticed. If you have any questions about it just click the question mark at the bottom of this page and send a message to the support team. Always glad to help. And once again, WELCOME to MyApnea.org
