New and waiting and worried.

[2am]

I had a sleep test on March 18th. The tech came in and woke me up and put me on a CPAP. She said she wasn't allowed to give me details, but she woke me up because I was in the "emergency intervention" category. After she hooked me up and left the room, I lay there and quietly cried. I was scared, angry, disappointed.. and feeling like "what more must I go through?" because let me tell you, things have been rough.
So anyway.. I waited and waited to hear about the results. Then I had to see my doc again on April 1 for something else and asked him about the test. He hadn't gotten anything from anyone. He put in a request for me to see the specialist over all the sleep study stuff. They got me in on April 5th. That doctor asked why I hadn't been in sooner (I was wondering the same thing). He said I stopped breathing 80 times an hour. Then went on to tell me that 30 was considered severe My heart dropped. I felt like someone kicked me in the gut. He explained everything and emphasized how detrimental this level is to my health and ordered a CPAP for me. That was April 5. The CPAP people called the very next day to my relief, but then they told me it would be the 14th before I could pick up the machine. So as I write this, I'm still waiting I don't understand how something so serious can be put off nearly a month. Maybe there isn't such an urgency in treating it as they had made me believe? All I know is they all have me scared to go to sleep now without it. I've been an emotional wreck and stressed out since learning all this. I mean - 80?!

So, I am looking forward to starting on the CPAP this coming Thursday hopefully. Everyone has told me what a change I am in for and promised me a better life. I hold onto those words like a lifeline right now. Is 80 a common number? Just how bad is it? I need someone to tell me I'm going to be ok.

[yaconsult]

This is very bad service on the part of the DME. They should be able to provide you with a loaner machine until you get your permanent machine in. I have the same tested AHI and without cpap you're not getting any sleep. You are being aroused 80 times per hour, so more than once every minute.

If the DME is reluctant to provide a loaner machine, your doctor's office should be able to motivate them - or find a better, more responsive DME for you.

Please make sure that when you get your permanent machine that it's a full data auto cpap that is supported by sleepyhead software. Don't let them stick you with a brick that won't allow you to monitor how your therapy is going. This step is absolutely critical.

There are many posts on this forum that have the details. Start with the stickied posts at the very top of this forum in the Announcements section.

Here are some must read links:
http://adventures-in-hosehead-land.blog ... -with.html
https://maskarrayed.wordpress.com/what- ... me-part-i/

[SleeplessUK]

New here myself, and knowing what AHI you are doesn't help. I was "lucky" enough not to know until I had my machine so I continued as I always had until then. If I had known I was 50, or in your case 80 it would have made the situation worse. Ignorance is bliss as some may say.

I'm not sure what level Emergency intervention is required, but to me an Emergency is a critical situation that is required to save life and limb. I'm amazed that they let you leave after such an intervention without any equipment. They should have sorted you out there and then with something to use, and if it were me I would have demanded some level of assurance before I left. Could the clinician possibly used the wrong words when she woke you up? Maybe they scared you unnecessarily. In the end only you can truly take charge of your health. If you feel something isn't getting done or isn't right you need to contact the clinical staff until you are happy with the outcome. In my so far short experience with sleep apnea I have yet to meet any staff that actually have the issue and can relate to what it's like. This is why you need to drive the outcome.

As a bit of a silver lining, you can take a little comfort knowing that, even though you aren't getting much sleep at an AHI of 80, it is more than likely you have lived this way for at least a little while. If the clinical staff who looked after you were worth their training they would have monitored other health factors and hopefully deemed that you are healthy and don't have any other medical symptoms like high blood pressure, or any other reason to keep you under observation. Contact them again if you need reassurance until you are happy they are meeting your needs. My wife went on at me for years saying I had heavy snoring and stopped breathing a lot during the night for anywhere up to 10-15 seconds. Lucky enough I still woke up every morning to talk about it until finally finding out I had an issue, and I'm sure you will be too.

Again though, if you feel it isn't right you need to demand a course of action to satisfy your concerns. What is ok for one is not always ok for all. Contact the Doctors or the DME and push for an outcome you are happy with.

[Sheriff Buford]

Ah...the wait.... the wait.... you should call and see what type of machine they are ordering for you. Start the battle early. Ask about the mask return policy. You'll probably run thru many masks until you find one that is comfortable and doesn't leak. This forum will help you be successful. Bring all your issues here. The "80" is the AHI on your sleep test. The "80" means the number of times an apnea event occurred divided by the hours you slept. If you have an 80 AHI and you slept seven hours, that means that an apnea event occurred 560 times! The "acceptable" AHI is considered a 5 or less, but I personally feel that is high. Hang in there. If I have to come up there and tase anybody... say the word!

Sheriff

[Mudrock63]

Just so you know you are not alone, my brother was released from the hospital yesterday with heart issues. They believe he has sleep apnea, and ordered a sleep study for him. In JULY.

Without knowing all the particulars of your case, the best thing I can tell you is try to sleep on your side as much as you can. Back sleeping tends to aggravate OSA.

[ChicagoGranny]

Without knowing all the particulars of your case, the best thing I can tell you is try to sleep on your side as much as you can. Back sleeping tends to aggravate OSA.

+1

[Morchella]

Also, keep in mind that the AHI is made up of both apneas (stopping breathing for at least 10 seconds) and hypopneas (struggling to breathe, to the extent that your blood oxygen level drops by a certain amount). Not that either one of them is good for you, but it might be a bit less scary if you don't think of it as "I stop breathing 80 times an hour!". Because without looking at the full sleep study results, you don't know how many of those were actual stoppages, and how many were just struggles. (For me, 85% of the events were hypopneas.)

[ChicagoGranny]

hypopneas (struggling to breathe, to the extent that your blood oxygen level drops by a certain amount)

Not true. See wiki/index.php/Category:CPAP_Definitions#H

[Morchella]

Ah, I knew there were different definitions out there, but I didn't know that they could also be defined in sleep studies without an O2 drop. (My sleep study printouts have two checkboxes in the hypopnea section: one says "3% hypopnea rule" and the other says "4% hypopnea rule", and the 4% is checked on both of them.)

[Violet West]

Do what you can to reduce your level of stress and anxiety right now -- it's not helping. Breathing exercises, maybe?

I was in much worse shape because I actually landed in the hospital ICU for 4 days because of atrial fibrillation caused (they think) by untreated sleep apnea. It was 5 months after that until I started my CPAP therapy, so . . . chances are you will be okay for a little while. (Note that I don't recommend that time interval, just that I was so sick for several months after that, then I delayed, then there was a money issue . . . )

[tazmania]

Sorry to hear about your struggles 2am.

It shouldn't be this way. Over 8 years ago when I went in for my sleep study (2nd one as the first one was botched by the tech on duty) at a local hospital I walked out of the hospital after the study with everything I needed to start my CPAP therapy. They had all the machines and masks there on site at the hospital even though the sleep study was conducted by a 3rd party hired by the MN sleep institute. I was billed later ... that's another story. Grrr.

[2am]

Thanks so much for all of the input everyone, I'm so glad this community is here to turn to. I only have a small circle of family in my life, and none of them have experienced this. I appreciate you all Thank you! By the way Sheriff, is that offer just for doctors and techs? I could make a list... ehehe

[Arawa]

Nothing to add, but I wanted to let you know I'm in the same boat. I had my sleep study last week, but instead of giving me the cpap, they put me on oxygen (see my freak out post below). I did get the info that my O2 SATs went down to 45% during the night and that I had lots and lots of "events", and that was an unofficial peek at the record sheet the techs keep. I've called and they tell me no results yet, but I'm scheduled for a titration study next week. Basically they said unless they tell me not to come for the titration study, I show up for it, and not to expect any more info before then. After next week, I have a May 5th appointment with the sleep doc, and I have a feeling that's when I'm going to get my rx.

Right now I'm sleeping worse than ever. It seems like now I know how bad it gets, I feel it even more than I did before, and it was pretty bad before. And this is going to be another month at the fastest before I get any relief? I just feel like crying right now.

[Mudrock63]

Do what you can to reduce your level of stress and anxiety right now -- it's not helping. Breathing exercises, maybe?

I was in much worse shape because I actually landed in the hospital ICU for 4 days because of atrial fibrillation caused (they think) by untreated sleep apnea. It was 5 months after that until I started my CPAP therapy, so . . . chances are you will be okay for a little while. (Note that I don't recommend that time interval, just that I was so sick for several months after that, then I delayed, then there was a money issue . . . )

That is what happened to my brother this weekend, without the ICU part.

[hpm08161947]

My Dr. sent me for a sleep study in Oct. 2014, it took until Jan 2015 to actually get the sleep study. I had a 64 AHI, it did not surprise me as I knew I was in very bad shape. Actually I thought I was dying. Given how long it took for the sleep study, I assumed it would take just as long to actually get the machine, so I borrowed one from my sister in law who no longer used it.... surprising how many people there are like that. I simply cranked the machine as high as I could, I had no idea it would go to 20, and I had no idea what results the tritration would yield (18 was prescribed eventually). I got lucky, the random high pressure that I was guessing at actually helped to carry me through till April when I finally got my machine. A six month wait from Doctor's visit till getting help really seems excessive.