Newbie - Just diagnosed

[tvmangum]

It's official. I have just been diagnosed with "Severe OSA/Hypopnea Syndrome." My AHI was 24.10 per hour during 5 hours 56 minutes of sleep. Average O2 sat was 90% with the lowest being 83% during Non-REM sleep and 86% during REM sleep, if I'm reading the report correctly. I had 1 central apnea, 6 obstructive apneas and 136 hypopneas.

I don't really understand what all of that means other than what I've been able to read online. My titration is set up for November 2 unless they have a cancellation.

What should I expect from here on out? I know that CPAP is coming. How do I get ready for this change? How do I prepare my wife and kids? How will this change my life? I'm fine with whatever happens but I am more concerned about my wife and sons--and of the course the dog that sleeps in the bed with us. I've read many of the posts and right now have so many questions and don't really know where to turn.

Any thoughts or comments will be greatly appreciated.

[carbonman]

. My titration is set up for November 2 unless they have a cancellation.

What should I expect from here on out? I know that CPAP is coming. How do I get ready for this change? How do I prepare my wife and kids? How will this change my life? I'm fine with whatever happens but I am more concerned about my wife and sons--and of the course the dog that sleeps in the bed with us. I've read many of the posts and right now have so many questions and don't really know where to turn.

You have turned to the right place.
Keep reading....under the light bulb.....all the posts...
go to cpap.com, pull up the machine comparison tool.
Roll your mouse over each feature and learn what it does.
Learn which of those features each machine has or doesn't have.
Ask questions here. Read somemore.
I would do everything I could to speed up that titration.
See if you can get a 'script for an apap and get going without.

Everything is going to work itself out.
The dog will probably be glad to still be on the bed...and couldn't care less.

I hope you can expect to get some quality rest and a new life.

[freepostg]

Welcome to this absolutely wonderful forum. There are people here that are a wealth of information. I would advise you to read as much as you can. Click the yellow lightbulb on the main page.
To me, it looks like you fall in the "moderate category" and not "severe". Someone else correct me if I'm mistaken.
Regards,

[Julie]

Hi, and welcome to the forum. The first thing to do I think is try to relax, because your life may change in little ways as a result of starting Cpap, but in much bigger ways as a result of finally getting treated. Don't know how old your kids are, but you can take your time and explain things to them at whatever level they can handle, the way you would anything else. A 12 yr old boy would probably really relate to catching a glimpse of "Darth Vader" on occasion, but a small child likely will just accept it the same way little kids would for anything else (everything's new to them after all) as long as you show them the equipment first (on your lap) and slowly bring it up to your face. Explain that sometimes people need to sleep in different ways, and that it's what you'll be doing, no biggie. Most of the time though I imagine, your kids will not be in your bedroom anyhow, so just a simple (unscary) explanation would be in order. Your wife may complain about feeling a little cool air blowing in her face, so you might end up back here asking about a different style of mask - happens all the time, but she'll be so glad you're being taken care of (finally) that I'm sure she'll want to be involved in it all. Don't know your dog, but would first let him sniff the contraption, then slowly bring it to your face, but keep talking to him so he doesn't think you've morphed into a stranger. Don't allow him to bite it of course (or the hose - though there's more than a few of us with duct tape on ours due to cat claws, etc. (the hoses are only about $10/ea. though, so again, no biggie). If you're calm and cool about it all, so will your family be. Let them know that while it's necessary, it doesn't mean you're dying or anything like that, or that you'll get worse anytime in the foreseeable future. Remind them how many people have diabetes, and that they inject themselves every day, and use funny little meters to check their blood. You'll be given a mask (hopefully get to try on lots and see what feels 'right' (no leaking round the edges, not too tight anywhere (and often too tight when adjusted at home can create worse leaks), etc. etc. Just for the record, BTW, it seems the majority of us were diagnosed as having "severe" OSA, but in fact your numbers at least seem to have you in actually quite a moderate group, nothing to get excited about. We all get lots of hypopneas (they're sort of semi-apneas), more than apneas, again, nothing to worry about. A few centrals when tested, or even at home are nothing to concern yourself with at all. So how do you get ready? One step at a time, and do read everything you can on the forum (especially the 'lightbulb' link top of the forum) and keep your cool - you should be fine - plus everyone help will help you along every day if necessary!

[phyl]

Hello fellow newbie..
I just came here today. Have been on cpap for a month now. I would suggest that you ask a LOT of questions when you get your prescription and get as 'liberal' or general prescrip as possible. When you go for your machine and mask, you will need the prescrip to be as liberal as possible so that you can get the machine that truly suits you.

I have been married for a looonnnnngggg time. Yet, I do feel a bit uncomfortable still with the cpap. When there are leaks at night, I wonder if I am waking him....

BTW, my 3 yr. old golden retriever sleeps in bed with us. He has paid no attention what so ever. Be aware that you cannot talk once you turn your machine on, so prepare you family for that and adjust anything that you do at bedtime so that you can settle in and not need to talk once you have your mask on.

My 'children' are 25 and 21. Both are quiet well educated and sophisticated, but, they have been very dubious about this entire situation. They both said at different places, "You mean you have to do this every night for the rest of your life". I think it is a matter of seeing mom as perhaps not quite as 'solid' as children see their mom. They have not seen me with my gear on, and lol, I don't think they need...it ain't purdy.........

Best of luck....

[Nodzy]

Welcome!!!! As said above... you've found the best place for finding caring help and valid answers from people who achieve beneficial therapy despite multiple obstacles. And I echo... read, read and read from the wealth of info posted here. Good luck.

Nodzy

[westbeez]

Welcome aboard, just think you'll still be around to see your kids grow-up. My father probably had the same thing I do and he was dead by 49! My o2 drops to 70% when in rem, that's pretty scarry! You were caught early and thank god for that. Your wife will adjust it's better then snorring, and she can get ear plugs. I just found a mask that is real quiet. As for your dog it common knowledge the dogs will adapt to anything to be allowed in bed!!! Keep reading you'll go to your appointment with some good advice and know what you're looking for. Nice meeting you!!

[allinknots]

I am also very obviously a newbie! This is what has helped me:

Go shopping. Buy a notebook binder, index tabs, a new printer ink cartridge, lots of printer paper, a highlighter, and a 3 hole punch if you don't have one.

Set up the notebook with the little indexes. I titled them, "Dr.'s office," "Forum notes," "cpap.com," "local DME," "My notes". I went to cpap.com or one of the other online suppliers(?) and found the page that talks about sample dr. prescriptions. After I did a lot of research, I knew I wanted an apap machine that has a heated humidifier, a long hose, obviously a mask, the software and card reader. Then I called my dr. and sweetly requested a script that would have those items on it.

I printed out lots of forum notes, info from cpap.com, and a lot of what's in the "our wisdom" link at the top of the page. I've read and re-read them, highlighted stuff, and basically pretended I was taking a college class entitled CPAP 101.

Pretty soon I was able to talk like the big boys and girls. Well, almost.

It's very overwhelming at first, and then gets to mildly overwhelming, slightly overwhelming, and then just a bit overwhelming... But I'm in a much better place understanding-wise now than I was a couple weeks ago, and that's thanks to this forum that has my undying devotion.

Best of wishes as you begin,
All in Knots

[Virtus Velox]

My 'children' are 25 and 21. Both are quiet well educated and sophisticated, but, they have been very dubious about this entire situation. They both said at different places, "You mean you have to do this every night for the rest of your life". I think it is a matter of seeing mom as perhaps not quite as 'solid' as children see their mom. They have not seen me with my gear on, and lol, I don't think they need...it ain't purdy.........Best of luck....

"You mean you have to do this every night for the rest of your life".
Phyl, lol, I'd tell them "I get to, not got to, do this every night for the rest of my life, because it allows me to have a better life!"

[THier]

Welcome,,

It is not the end of the world,, just a new beginning.

Don't worry about kids,, they'll be fine Maggy (8) and Jessika(4) are, and wife is fine as long as the walls have stopped being sucked in and out by snoring.

You will get more info here than from your doc, DME, RT or anywhere else. Hopefully you have decent ins. If not, rent a machine for a while before you buy,,, and when you do buy,, check Cpap.com before you buy local. What sucks for me is I don't pay a penny going through my DME, but 20-25% if I go anywhere else. I went from a piece of junk Brias, to a good Remstar Pro Cpap, to a self purchased BiPAP auto legacy,, and just got an insurance paid for M series BiPAP auto. So I now have a backup BiPAP Auto, and a backup backup CPAP.

Tom

[alnhwrd]

Welcome to the forum! First, an apnea is an episode when you stop breathing for longer than ten seconds. An obstructive apnea means you stopped breathing because your throat collapsed or became blocked, stopping the flow of air, requiring your body to wake up enough to unblock your throat and get the air moving again. A central apnea means, simply, that your brain "forgot" to tell your body to keep breathing. Sounds bad at first, but its really not uncommon and unless you have a lot of them you probably won't have to worry about them. One all night is not significant. Hypoapneas are partial or "wannabe" apneas, a reduction in airflow by 40%. These can also bring you out of the deep restful sleep your body needs and reduce your blood oxygen level. When your airway is blocked or restricted long enough, your oxygen levels start to decrease and, since oxygen is kinda important to staying alive, your brain can go into panic mode and get your blood pressure and heart rate up. This puts stress on your heart and body. Correct application of CPAP will prevent this from happening, and your heart and cardio vascular system will no longer be subject to this stress 24 times an hour every night. That is why this is considered a serious (but very easily treatable) medical condition.

Your titration study will be very much like the sleep study. You will be hooked up to all the wires again, but this time they will also hook you up to a CPAP machine. A long hose will bring humidified air from the CPAP unit to a mask which goes over your face. The mask will either have pillows or prongs that insert into your nostrils (sounds weird but LOTS of people prefer this method) or something that looks kind of like an oxygen mask that goes over either your nose or your nose and mouth. Ask them to let you try all kinds so you can get an idea about which you would prefer. You could even browse CPAP.com or Cpapauction beforehand to see what kinds look interesting.

Next comes the fun part, trying to sleep for the first time hooked up to all of this. My best advice is just to relax as much as you can and let it happen. In time, you will adjust and wonder if the machine is even on. The tech will start you out at a low pressure and slowly raise it by remote control until the pressure is sufficient to keep your throat open while you sleep and allow for more normal breathing. That pressure will be your "titrated" pressure. The tech will send the report to your Dr., who will then send a prescription to a health care equipment provider (often called a DME or Durable Medical Equipment provider) who will set up a machine, hose, mask and filters for you to use. They will either have you come and pick up the equipment or they will come and set it up in your home.

Make sure there is a place next to your bed for a small table to set your machine on. It will live there for a long time. If your DME has provided you with a quality machine you should not have huge issues with machine noise. We run a fan in the bedroom too so we have no problem. The first week my wife thought I had died in my sleep because I was so much quieter with the CPAP on. Lots of issues can arise, especially at first, but have the attitude that you will overcome them and be successful, and coupled with the information available on this board (and the chat room) you will do exactly that. Best of luck to you.

[Virtus Velox]

Just wanted to thank alnhwrd. That was a very succinct missive and was very clear in your message of support. Great job.
Virt