Maiden post: just dx'd this week with severe apnea

[ellen1159]

Hello. My name is Ellen and I completed a "split" study this past Monday night at my local hospital's sleep center. Last night the MD/Director called to say I have severe sleep apnea.

I'm still a bit in shock and panic at being here, even though I'm not new to apnea (my ex was dx'd 15 years ago and has been a hosehead ever since), and two of my three kids have done sleep studies at the same place and both have Snoreguards. I'm 53, am morbidly obese (264 on a 5' 4" frame), have high cholesterol, high BP, just started taking a diurectic after noticing my feet and ankles swelling up about six weeks ago, and I suspect I also have some mild CHF because I can't move fast, can't walk more than ten minutes without taking a break, and feel short of breath when I lie down at night.

My sleep situation is pretty miserable. I dread going to bed no matter how tired I am because I know I will be waking up every two hours completely dry mouthed, coughing (oh, I have reflux too that seems to bypass the esophagus and go straight to the sinus cavities, I often wake up choking and gagging on mucus during the night) and short of breath. I have to get up, walk around, watch tv for a little while until I fall asleep sitting up, then wake up and go back to bed. Then get up at 6:30 to drive my teenager to school and get ready for work, if I have any. How's that for a Match.com profile?

What prompted me to ask my doctor for a sleep study was the recent scary habit of falling asleep at stop lights. The idea of harming someone else pushed me to get help now, otherwise, I'm sure I would have postponed the study until I at least had a full time job or insurance that covers the expense. I justified putting it off by telling myself that I would diet, exercise, lose the excess weight and the problem would clear up. I will be working out a payment plan with the hospital as well as getting some help from family (embarrassing to have to accept money from my widowed mother, but I can't wait any longer). The doctor knows my situation and offered to help by consolidating some appointments to save me money.

Anyway, the study. Boy, had I known ahead of time how uncomfortable I was going to be, and on a night when I was due at a temporary office job the next day ("auditioning" for a full time job, which I didn't get), I might have cancelled, but I'm glad it's over and I know what the problem is. I spent the first few hours wired up, positioned on my back (I've never been able to sleep on stomach or back), with the finger Co2 meter taped on so frickin' tight I thought for sure I was going to lose the digit. Took forever to fall asleep. Then finally the tech comes in with the mask, a Resmed Quattro FX full face job. I'm doing my best to overcome my natural claustrophobia and the feeling of suffocation. The air I was exhaling seemed very warm. It helped when the humidifier was turned on.

Again, I was uncomfortable from the 'trodes (knot in my neck), my finger, and now trying to find a comfortable position halfway between supine and my right or left side. Took forever to fall asleep again, once I got used to the air pressure. Not sure how long I slept but next thing I knew it was six am and tech's voice was on the loudspeaker telling me to blink, look left and right, etc. I managed to get to work and even though I was tired and could have used a nap, I wassn't as tired as I usually was after a bad night at home.

I expect my machine to be delivered sometime this week when a home health care team comes to my house to show me how to use whatever hardware they are prescribing. I came home with the mask I used, so I'm assuming that's the one I'll be using.

I started reading some of the pinned posts by veteran hoseheads telling about how long it took for them to feel relief, and that makes me feel a bit less panicked. As much as I hate how I feel right now, I'm still scared of this machine and mask and terrified I'll never get used to it. Perhaps due to the reflux, or allergies, I have chronic nasal congestion and use a breathe right strip every single night just to be able to fall asleep....by my first waking episode, that strip is useless, i'm all congested again (I'm using Nasonex currently but I wonder why I bother). I'm worried about the congestion making me wake up just as frequently as the apnea did, and having to wake up to take off the mask, get a drink of water to hydrate my mouth, blow my nose, put the mask back on and tighten it up again.

Anyway, I'm glad to have found this forum because it sounds like I'm not the only one who started out in panic mode with multiple issues. I keep reminding myself, maybe having to use this machine sucks, but it's better than dying.

Thanks for your time reading this. I look forward to getting to know you all better.

[123.Shawn T.W.]

Sorry to hear of your troubles ... The important thing is the YOU made the decision to do something about it!

Inch by inch ... Life's a cinch ... Or, so I've been told!

[sleepyhead100]

Hi Maiden, I"ve been using a CPAP for seven years. This site has been very helpful. Being new to the treatments seems impossible and at times overwhelming. The bottom line is take it day by day and you will see your body can adapt. Over the years I"ve had ups and downs. I tried the surgery and it didn't cure me. I would focus on the treatment. It takes persistance and refusing to quit trying. I started using nose pillows, but leaked thruough my mouth. After trying many other options (if you find your self having to spend some money to try other options it's not uncommon) I have found the Res Med Quatro pro has been my best option. The full face mask scared me at first, but after several years I"ve realized that was no issue. Support from my family and heavnly father have been the most help.

[Pugsy]

Welcome to the forum. You aren't the only one to come through these doors feeling the way you do but people do work through their issues as they come up. Just like walking ...one step at a time and if you stumble...we will help pick you up.

Time for some education about your equipment...don't just blindly accept what they bring.
There's good chance you will get a machine that only records hours of use...not even leak data. No way to see if something needs improvement...like leaks or apnea events or anything.
So first of all read these 2 blog entries.

http://maskarrayed.wordpress.com/what-y ... me-part-i/ this one explains how to prepare yourself to deal with your DME and what to do

http://maskarrayed.wordpress.com/ this one explains full efficacy data vs compliance hours of use only machines

This is a very recent thread where the importance of a full efficacy data machine is shown.
viewtopic.php?f=1&t=88204&st=0&sk=t&sd=a&start=45
read especially the last 2 pages...link should take you to page 4 and there's a little on page 5

If you are going to have to wear this stuff...and do the work...you want to get the best possible results don't you?

[Drowsy Dancer]

I expect my machine to be delivered sometime this week when a home health care team comes to my house to show me how to use whatever hardware they are prescribing. I came home with the mask I used, so I'm assuming that's the one I'll be using.

Welcome, Ellen!

I know this is an overwhelming time for you, and you're feeling lousy, but I wanted to make an important point about the above. The "home health care team" does not do the prescribing, unless your sleep doc is going to pay you a home visit (highly unlikely ). Your doctor writes the prescription. They typically prescribe a type of machine (CPAP, APAP, BiPAP), but not model and make.

There's a tendency of some DMEs (Durable Medical Equipment providers) to "interpret" the prescription to shove a cheap machine (a/k/a "brick") onto unsuspecting new patients. Typically it costs you the patient the same but they make a higher profit on the bricks. I'm not saying this will happen with you, but when they come with your machine, you need to make sure it is a data-capable machine with full efficacy data. Accept nothing with "Escape" in the title.

There's a good description of what you need to know here: http://maskarrayed.wordpress.com/

[pandatx]

Welcome Ellen! You are at the right place. Everyone here is so generous, knowlegable, and supportive. You definitely will have to be assertive but be sure you get the equipment that will give you the most data (see Pugsy's links).

xoxo

Amy

[jencat824]

Hi Ellen! Welcome to the Forum,

I've been on CPAP 13 yrs & only just found this forum last Oct. I've found lots of answers to my questions & there are a lot of great folks here who will help you. Once you get your new machine (make sure as posted by Pugsy & Drowsy Dancer you get a full data capable machine), just list the machine in you User Control Panel, that helps us all stay on the same page, so to speak.

Although this process sounds scary, you have your new friends here at the forum to help you, when you have a question, just post It and we will help you thru it. Also, if that mask doesn't work, there are lots of masks out there, ask your DME if they can 'switch out' that mask you came home with, in the event it doesn't work for you. Just another question to write down on your list for your first DME meeting.

As for sleeping, you will hopefully find it easier to go to bed, you shouldn't have as much trouble breathing, I found that the air from the CPAP machine made it easier to breathe when I first started. Now, I can see such a difference that I wouldn't want to sleep without my machine - ever.

You have taken the first steps in your new life - you have found a great support system, this forum. Now the next steps are coming with the delivery & use of your machine. As you hit problems/issues & have question, just remember this forum is here.

Good luck on your new road in life.
Jen

[Nooblakahn]

You certainly are not the only one to be shocked with your diagnosis. I knew I had OSA when I went for my first study.. but hearing about the centrals scared the hell out of me and actually made me feel like crying...

Stick with it, it can get better. Lots of helpful and supportive folks on this forum.

[chunkyfrog]

Welcome to our little family.
Many pappers have gained the energy needed to lose weight and your pressure needs may change.
If you have a full-data auto-titrating machine,you will be able to always have the correct pressure,
as it is believed that every 30 pounds or so lost means a need to recheck your pressure needs.
Periodic sleep studies are a cash cow for sleep labs, and insurance may not cover them.

[archangle]

Welcome to the board. Sorry you are joining us.

Job one is to not get screwed by being given a "brick" CPAP without full data collection. Without full data collection, your treatment will be like you and your doctor are driving with the windows frosted up.

Check the useful links item in my signature line for some help on what machine to accept, what to reject, and how to make your DME (CPAP seller) give you a good machine. Many of them will try to screw you.

[caffeinatedcfo]

Welcome to the community Ellen!

I just started CPAP appx two weeks ago and found a treasure trove of information and support in this community. I was very educated when I met with the DME and the help offered by others here have helped me get started on the right track and also kept me from getting discouraged when I had a bad night.

I'm not 100% yet, but am seeing small improvement every couple of days.

Good luck and stay involved during your journey ... we're all here for each other.

-Kevin

[ellen1159]

Thanks, Kevin. It's nice to know I'm not suffering alone. Any small improvements will be welcome! Good luck to you and best wishes for continued measurable improvement.

[ignorantone]

If you have problems getting used to the equipment, start using it way before you go to sleep just to get acclimated to it. If you are a mouth breather, you need a full face mask so don't even bother with the nose pillows. Hope this will help you.

[DEXSUZ]

Ellen: I had the exact diagnosis as you and the same equipment was prescribed. Quattro FX is outstanding but give it time to get to know you and vice versa. In my experience one shouldn't try to go bull-bore night's sleeps right off the bat. Instead try these steps:

1) Put the mask on in the middle of the day or evening for a few minutes and then an hour or so. Do it sitting up, if you please. With QFX you should have no trouble seeing over the top of the mask so reading or watching TV is fine. Learn the noises of the machine, the rhythms your body seems to engage with it and generally marvel at what people a generation never had the chance to use. One of the first things you'll discover is it's hard as heck to talk when the air is blowing your windpipes open.

2) After a week or so of #1 and when you are dog-tired one afternoon, take QFX and have a nap. Take the phone off the hook, clear the house, pull down the shades, put on loose clothing, and just recline and see what happens. If you're like me, one of those first few days you're going to have the most wonderful little snooze full of dreams. Do this for about a week.

3) When you're ready for night-time duty with QFX, DON'T put it on at bedtime. In my case it made me nervous, anxious, and sleep came much later than I wanted. Instead, go to bed like you have most of your life but the first time you wake up, put the mask on and turn on the gizmo before your brain has the chance to fret. For me this was around midnight.

4) Only when I was thoroughly familiar and trusting of all the noises and abilities of machine did I finally say to my wife: "THIS will be the night I go to bed with the mask on. For me that was March 3 and the last six weeks have been very good. One day was particularly awesome when I retired at 11 p.m. and then asked my wife what time it was. "7
o'clock was the answer." I had slept the entire night and without snoring for the first time in ages.

One small hassle with the QFX is that it has tendency to ride up on your face and lose air near your eyes as you move on the pillow. At another place on this forum is a thread in which a gal told of how she fastened a strap under her chin and the mask-moving stopped. As you look at the posts underneath hers, you'll see one from me today (4/13) that verifies that all it takes is a little sewing and the QFX becomes snug enough to prevent leaks but not so tight that you feel like it's pushing your face into the mattress.

MUCH, MUCH good luck and be sure when you get your equipment to flop on a bed at the store and get advice as to what tension to put on the straps of the QFX.

Come back here any time for help! God bless.

[knightlite]

Ellen , I heard you say that you are going to have to buy out of pocket -- no insurance etc. Well study your machines and costs don't accept just anything . Get your prescription and shop around.
I bought a new apap ds560 from this forum member I recommend . Check it out and listen to the queen helper on here (PUGSY) shes a jewel . Check this out
viewtopic/t88324/For-Sale-PR-System-One ... 25500.html
http://www.secondwindcpap.com./ is also a good supplier .
Best of luck to you , it gets easier in a short while.