Just saying hello!

I am super brand new to all of this. I am really relieved to see that there are so many knowledgeable people on here, so I don't have to start from scratch in gathering all of this new information. Doctors don't really prepare you for how many decisions there are to make about different machines, masks, options, etc. But you all are like having a bunch of experts in my back pocket when navigating these overwhelming options . I don't even have a machine yet, I did an initial sleep study and the doc called right away because the results were so horrifying she was willing to lend me a unit until we could do a second sleep study with a CPAP. It doesn't feel good to know I've been risking my life by going to sleep at night. I have Lupus, Sjogren's Syndrome and a rare genetic condition called Fabry Disease. So on top of these they now tell me that I have severe sleep apnea. It's so fun being me! I do hope that getting more restorative sleep will reduce some of my symptoms from the other conditions I have. I plan on relying heavily on all of you for good information and tips to make this process as smooth as can be. I know it won't be easy, but you gotta do what you gotta do. So hello, and thanks for taking the time to offer up all of your hard earned experience in this new foreign land.

Welcome Meridian -- You found the right community for help and support. Look up member Janknitz and check out her blog -- the best first step is to make sure you get a fully data capable machine, and not a "brick" -- a machine that only records hours of use. A full data machine records your AHI, mask leak rate, and other valuable information that allows you and your doc to know how well your therapy is working and if it needs adjustments.

Keep us posted and ask any questions you have along the way.

Thank you so much! My next questions was going to be "Where do I start?" But you have already put me on the right path. Thanks so much. I will be full of questions. I see the sleep doc next week and I will get copies of all my baseline stats so I can keep track as everyone here seems to do. It's smart, so you can track your own progress, or problem solve if not making progress. It's also nice to get realistic information on how long it might take to notice results. I like honest info, up front, so knowing this will not be an overnight fix is really helpful so I won't get so discouraged, which I can see happening quite easily.

Thanks for your help!

Amy

BTW- I am 40 yo female and I get a lot of nasal congestion when I lay down, so this will be interesting.

Suggestion - get the 'full' report from your study, not just the summary, because it'll have the kind of info you want going forward.

Meridianzzzzz wrote:Thank you so much! My next questions was going to be "Where do I start?" But you have already put me on the right path. Thanks so much. I will be full of questions. I see the sleep doc next week and I will get copies of all my baseline stats so I can keep track as everyone here seems to do. It's smart, so you can track your own progress, or problem solve if not making progress. It's also nice to get realistic information on how long it might take to notice results. I like honest info, up front, so knowing this will not be an overnight fix is really helpful so I won't get so discouraged, which I can see happening quite easily.

Thanks for your help!

Amy

BTW- I am 40 yo female and I get a lot of nasal congestion when I lay down, so this will be interesting.

Good to have you with us Amy. You'll find a lot of discussions here about how people deal with nasal congestion when on cpap therapy.

I forgot to mention, many people are told by their medical supply providers that the machine they're selling/leasing does offer "data," only to get home and realize that the only data is the hours of use data. If you have any doubts about a specific machine please don't hesitate to come back here and check with us before you accept the machine.