Who helped you sort all this out?

Today I got the official call from my pulmonary doc that I need a cpap. I also called and asked the sleep center for both my sleep study and my titration reports. Who than explains what this all means? It shouldn't just be "you need a cpap, someone will be calling you". Does the DRE, pulmonary doc (who ordered the sleep study) or the doc at the sleep center who should be sitting me down and explaining to what degree my sleep apnea is and what a cpap will do to correct it. I feel they diagnose, write a script and than I will be on my own! I hope I am wrong and someone will sit down and explain the whole procedure of cpap with me. If it wasn't for this board and a few other sites I would be clueless!!! Thanks in advance for any advice that will help.

Well, have you yourself asked any of the doctors to explain things in detail? If not, or if you feel you're not getting what you want, don't worry because the knowledgable and experienced people on this forum will help with every aspect as much as is possible through the forum. You can post your PSG result summary (or any pages you need help with), and get comments, but the best thing to start with is to click on the lightbulb at the top of the forum page and start reading all the links. You'll have more information than you ever thought you would need and can post any questions on the forum because people here love to help!

I hope it's different for you and you get somebody to talk to you and explain. My cardiologist didn't even get a copy of the report from the sleep center for 4 months and then only after calling a couple of times. I only heard from the DME who said let's make an appointment so you can get your CPAP equipment. She couldn't understand why I said I needed somebody to discuss this with me first. No one called me back from the sleep center until I sent their bill back with a note that I wasn't going to be paying any of these bills until somebody talked to me. I still have never talked to the sleep center doctor but at least the cardiology nurse practitioner got the report and called me, and then a tech at the sleep center called me.

cpaptalk helped me sort all this out. Some are very lucky to have a good sleep doc and DME who will explain everything and walk you through it, but I didn't. I am forever grateful to this forum, and the knowledgeable and generous people here.

I got a copy of my sleep study/titraiton report, and the book Sleep Apnea, Phantom of the Night. I read as much as I could here, printing out things I wanted to retain, and then read some more. You can start with the Wicki (yellow light bulb above). When issues came up, I would do a search for previous discussion, then read some more. If I couldn't find the information I needed, I started a thread and asked.

This is also a very good blog:

http://smart-sleep-apnea.blogspot.com/

Today is my 7 month anniversary, and I can't believe how far I've come, and how good I feel. I would like to share this feeling with everyone.

KatieW wrote:Today is my 7 month anniversary, and I can't believe how far I've come, and how good I feel. I would like to share this feeling with everyone.

Happy 7 Months, Katie! I'm right behind you -- 4 more days for me!


Welcome, ilvsleep! You're in the right place here. It does feel a little overwhelming at first, but you'll learn what you need to know, as we all have.

I did meet with a sleep specialist, who explained my sleep study results and discussed my treatment options. But even before I met with him, I found this forum. So I already knew that I had to have a machine that was capable of reporting full data. I had decided that I would listen to and consider what the doctor said, and then take charge of my own therapy. I knew that he wasn't going to be of much help beyond the initial meeting (and I was right!).

Like Katie, I learned most of what I know now from reading forum posts, researching on the internet, and reading books about sleep apnea. I continue to learn new things almost every day. This forum has been such a blessing!

KatieW wrote:cpaptalk helped me sort all this out. Some are very lucky to have a good sleep doc and DME who will explain everything and walk you through it, but I didn't. I am forever grateful to this forum, and the knowledgeable and generous people here.

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I'm with KatieW. This site and the good people here helped me sort it out. Without them, I would still be buying every lie my DME told me, have a machine that told me nothing, and know a whole lot less than I do now (and I don't even live in the suburbs of the "experts").
5 months anniversary for me.

Jeanette

My HMO requires people diagnosed with sleep apnea to attend a 3 hour class that explains sleep apnea, your sleep study results (in a kind of general way) and CPAP treatment. The class is run by an RT who also fits you for the mask and gives you some initial support. This was helpful, but too busy and general for all that I needed at the time.

This forum and another online run by the American Sleep Apnea Association have been my main support. There are a lot of incredibly knowledgeable people (and a few jerks, just like anywhere else) here who will answer any question and share their personal knowledge. The RT's for the most part are not CPAP users, so while they have a lot of academic knowledge about CPAP therapy, the people here have the real knowledge and teach you how to be your own advocate. When you take an active role in your CPAP therapy from the very beginning, I think you are much more likely to succeed. And the benefits are wonderful.

You're off to a great start by asking the question. The learning curve is steep, but you'll do fine