Scared/Upset Newbie

Kiralynx wrote:

Guest wrote:I've been lurking off and on since I found out I need to start using a c-pap.

Tomorrow night I go in to figure out what pressure I need, etc., and I'm really sad that it's come to this. I'm not even 40 yet. I dread the thought of what my husband will think when I go to bed with hose-nose. I try to blow off my feelings as immature, but I could cry every time I think of it.

Help!

How did you get used to the idea of being a c-pap user?

Hello, Guest! Why not register and give us a name? Many of us are friendly around here.

I should have been diagnosed about six years before I actually was. And now I wish I had been, because it would have saved me six years of pain and exhaustion.

I came to Hoseheading six months after a cancer diagnosis which included MAJOR surgery. I was scared, I was upset, I didn't know how to handle it, because I was, and am, claustrophobic, and the thought of putting A Mask On My Face and trying to sleep was purely terrifying.

Being stubborn, I dug in and studied and learned all the weird terms associated with hoseheading. I learned how and when to be stubborn with the provider of my equipment and my doctor's office. And I learned how to make this therapy work for me. Most of my learning was done right here in this Forum.

viewtopic.php?f=1&t=35319&p=303060#p303060

is my first thread in this place.

viewtopic.php?f=1&t=35662&p=306702#p306702

are the questions I had insofar as my first visit to the respiratory therapist.

And you might find this post, in response to being scared and wanting nothing to do with CPAP of interest:

viewtopic.php?f=1&t=35791&p=308736#p308736

We've all been there and done that. We've all been new to this, just as you have. You CAN do this -- and you are soooo lucky to have the diagnosis early, before permanent damage is done!

Welcome!

Thanks so much for the links! I've got some reading to do

I was talking to a friend of mine about my sleep apnia and he said "you mean you have to wear a mask to bed for the rest of your life" Gasp,gasp.

My reply was that it is better to take a more positive view of the situation. No one is making me use this equipment. I am using it because I will sleep better,feel better and live longer.

I am not sure I convinced him.

ozze_dollar wrote:I was talking to a friend of mine about my sleep apnia and he said "you mean you have to wear a mask to bed for the rest of your life" Gasp,gasp.

My reply was that it is better to take a more positive view of the situation. No one is making me use this equipment. I am using it because I will sleep better,feel better and live longer.

I am not sure I convinced him.

People just don't get it, they don't know what sleep apnea is or why the mask is important. I was one of those who didn't get it until just a few months ago when I realized I might have it and started doing research on it. The terminology 'sleep apnea' can be misunderstood as folks don't know the 'apnea' part of it. People hear the word 'sleep' and think it just means someone is not sleeping enough. They're unaware that the reason people aren't sleeping is because they aren't breathing and not getting oxygen and how serious and deadly it can be if untreated.

I think the word 'apnea' should be changed for something that people understand, such as 'nighttime suffocation syndrome' or something similar that raises eyebrows and gives folks pause.

Resistor, you're being quite normal. If you haven't already, check out the first thread in the annoucements section on dealing w/ change.

Resister wrote:Thanks so much for the links! I've got some reading to do

Some reading and a batch of learning! But you can do it! Hope reading my story is helpful to you!

Well.....I had my study last night! Of course, the tech couldn't tell me much, but after shoulder surfing I *think* I saw that I'm at a 6 for pressure. I feel surprisingly well after 6 hours' sleep, and it wasn't as horrible as I remember it from the night I was diagnosed and couldn't tolerate a mask at all.

Now I guess it's all about getting the equipment, finding all the right fits.....and getting over the un-sexy part.....

Hiya Resister!

I'm a newb hosehead too, just about 6 weeks in. Glad to hear your study went well, I popped on today to check on your thread. Let me tell you, I know all about your worries, I panicked pretty badly when I got diagnosed... about being too young for a health issue that required a machine (I'm 33), being being un-sexy to my wife, about realizing all the gloom and doom. I even called a shrink (ended up not going).

• You know what's un-sexy? Being tired, moody, having headaches, bags under your eyes, and having low energy.
• You know what's sexy? Having more energy, feeling good, looking well rested, and being in a great mood because that feeling of always being sick that haunted you for so long... it's now gone.

Your partner won't be concerned with the 15 minutes you look like a fighter pilot before falling asleep, they'll be concerned with the 16 hours you're awake

Your next step is to make sure the DME doesn't push you around. You've been sent a ton of great links, and this is a great community... you need a support system, and we're here for ya

Kilgore Trout wrote:Hiya Resister!

I'm a newb hosehead too, just about 6 weeks in. Glad to hear your study went well, I popped on today to check on your thread. Let me tell you, I know all about your worries, I panicked pretty badly when I got diagnosed... about being too young for a health issue that required a machine (I'm 33), being being un-sexy to my wife, about realizing all the gloom and doom. I even called a shrink (ended up not going).

• You know what's un-sexy? Being tired, moody, having headaches, bags under your eyes, and having low energy.
• You know what's sexy? Having more energy, feeling good, looking well rested, and being in a great mood because that feeling of always being sick that haunted you for so long... it's now gone.

Your partner won't be concerned with the 15 minutes you look like a fighter pilot before falling asleep, they'll be concerned with the 16 hours you're awake

Your next step is to make sure the DME doesn't push you around. You've been sent a ton of great links, and this is a great community... you need a support system, and we're here for ya

Yikes! Can someone give me an example of how they do this?

LOL...yes...headaches, bags, and moodiness really aren't sexy now that you mention it!

Resister, now is the time to become very proactive . Request copies of your RX and sleep study and titration study results from your doc( full report, 5-7 pages, not just summaries. call your insurance, find out who they contract with, and what they will pay . Crunch some numbers, will you be better off buying online? Maybe used? If so, no DMEs to argue with, just pay out of pocket for what you want, if not start calling the DMEs your insurance co will deal with and ask about mask return policy and what type of machine they are willing to dispense, DO NOT accept anything less than a fully data capable machine, one with acess to AHI, leak etc, preferably an auto, which can also be run in CPAP mode.. if a DME tries to foist a dumb data less brick on you, go elsewhere. Be specific with them about what machine you will accept, I'd go for anResmed S9 auto set, a PRSys1 auto or a DeVillBiss auto with smart flex. Read Janknitzs blog about meeting with DMEs or look up Rested Gals guide to fully data capable machines. Ask questions on the forum, we are here to help. Expect to be using the machine you get for 5 hrs, so make sure you get the best you can. Used is fine, just get data. Remember, nobody cares as much about your health as much as you, so take charge, don't depend on anyone else.

Resister wrote:Yikes! Can someone give me an example of how they do this?

Yep, check out Janknitz's blog entry: What you need to know before you meet your DME http://tinyurl.com/2arffqx

And here is rested gal's updated list of machines. Ones listed in blue are data-capable; those in red are not: viewtopic.php?p=307168#p307168

Resister wrote:Interesting to see I am not the only one who hasn't hit 40 who is dealing with this. This is not how sleep apnea is portrayed, if that makes sense. I guess feeling like I received a "life sentence" is just scary--but I trust that y'all know what you're talking about, and that being on C-pap actually improves the quality of life. That is something to look forward to!

You are SOOOOOO lucky to have been diagnosed this early! I envy you. Looking back and judging by how I felt physically, my apnea became severe in while I was in my 30s and I wasn't diagnosed until this last year. I spent over 20 years feeling awful--exhausted, too tired to think or enjoy things, gaining weight and not knowing why, etc. etc. etc. Everything was an effort and I lived on coffee. I went to doctor after doctor trying to find out why I was so tired and not one of them asked about my sleep. It wasn't until I got married and my husband started mentioning that I snored and stopped breathing at night. Even then, it took me a couple years to "bother" to go to a sleep doc.

A lot of my life was spent being exhausted and feeling just awful. I feel much better now (and the improvements are continuing at 7 months). I wouldn't go back to not using a xpap for the world. Hubby is happy because I don't stop breathing at night (he'd wake up) and I feel better.

As far as my husband is concerned, "sexy" is a wife with energy who wants to do things! Putting a hose and mask on at night is nothing. It's just part of my nightly routine now--I have everything ready to go and just slip it on right before I go to sleep.

Weezy

ameriken wrote:Look at it this way: instead of a life sentence, think of it as being given a second life. Realistically, the sleep apnea could have killed you by now, however you caught it in time and were given the chance to save yourself. So, instead of a life sentence, you've been given a new lease on life.

Here, take a look at this person, who didn't get the same chance as all of us.

viewtopic/t63178/quotDeadliest-Catchquo ... Apnea.html

I agree with 'ken!

I got my formal diagnosis back in December, about a month before my 39th, but I suspect that I've had moderately severe O.S.A. for at least the last 36 years - I had my tonsils and adnoids removed when I was 3 years old because I snored so loudly (my parents could hear me at the other end of the house) and I can remember falling asleep in school on a regular basis as a teenager.

I begged off and on, throughout the years, to get tested but nobody would test me (this is Canadian subsidised medicare for you ) and the one time that I was tested (via overnight oximetry alone), I was told that the readings came back "normal" (yet I was still sleepy all the time and I snored like you wouldn't believe). Finally, I convinced my current GP to send me to a sleep doc. He took a brief case history and send me home with a portable oximeter for an overnight study (all covered by Canadian subsidised medicare!). My results shocked the proverbial shit out of me.... my desat was at 76% (I work in health care and have had the opportunity to monkey around with the oximeters that are on the nursing wards and have only ever been able to make the machine read 89-90% by holding my breath) and I was shown to have had numerous events through the night.

This got me my moderately severe apnea diagnosis.

I couldn't be happier, because now there was a name for what I had been suffering through for most of my life. I am fortunate that I have good extended medical and even though the deductible is steep (CAD 100$ initial co-pay befoer they kick in and then 900$ more out of pocket before they'll cover me at 100%) I had spent enough prior to my diagnosis (thanks to allergy shots, anti depressants and cholesterol medication) and with the help of my RT and the DME, I was able to get Darth Vader fully covered within 3 weeks of my initial visit to my DME (i.e. I got to them in mid-December and my 100% coverage for the year ended on the 31st)... CAD 2500$ for my current set up would have been prohibitively expensive for me, unless I got a loan from the national bank of Mum & Dad.

As for your supposed "young" age... us thirty-somethings are definitely not the youngest hose heads out there... it's not unheard of for infants to be placed on xPAP - I work in a hospital that has a Neonatal I.C.U. and occasionally I see doctors orders for xPAP for these tiniest of members of our club... have never actually seen what their set up is like, but have definitely seen the doctors' orders.

I also must say that this diagnosis has saved my life! I can't tell you how many times over the last 4 years I've driven to work so drowsy that I've actually dozed off behind the wheel... I work afternoon shift, so I am in rush hour traffic for most of the journey and said journey takes me through a major thoroughfare and over a narrow 4 lane bridge! Every day, when I got to work, I thanked my lucky stars that a) I got there in one piece b) I didn't kill anyone along the way and c) there was no damage to my car or anyone else on the road. I felt 110% better after my first night with Darth.

I hope that you find the same joy with your machine as I did with mine, and I hope you find a lifetime of good nights sleep!

ameriken wrote:Realistically, the sleep apnea could have killed you by now, however you caught it in time and were given the chance to save yourself.

THIS. This to the power of this. Logarithmic increasingly T-H-I-S.

ResMed and Respironics should pay you to put that quote in their brochures! I think if someone said this to me before I started therapy, I would have felt a lot better about it instead of freaking out about sleeping with a machine helping me breathe. This is such a succinct, pragmatic way of looking at things... I love it. I have a few friends who are considering sleep studies. If they get diagnosed, this is exactly what I'm telling them!

I know my wife loves me so she wants me to be in good health. Not to mention she also suffered through my snoring.
When you want to be close you dont wear it.

Otherwise we are just sleeping. I might add soundly at that finally for both of us.

Trust me you will both appreciate the results