is it really worth it...

[Robo Pop]

I'm new, so forgive the amateur. Not that you should care but I'm enjoying end stage congestive heart failure.

Have had my Respironics Nightmare Station since June of 18 and ready to shove it where the sun don't shine. My AHI is averaging 14 with frequent forays even in higher territory. My periodic breathing is averaging 30 and again can easily jump up. I tried talking to my supplier about changing settings such zs pressure as they lock users out of some settings, but they apparently are only interested in selling equipment and blew me off.

So the question...is it really worth it? Not like I'm going to survive life

[babydinosnoreless]

I am sorry. For me its worth it but only you can make that decision for you. I sleep better and don't have to get up every hour to pee and for that alone I am grateful. I do know there are ways to change the pressure yourself. You need to know the secret handshake. I am sure others will be along with links to help you find out that handshake if you are interested.

Best wishes

Edited to add talk to your doctor, let him know the dme is being less than helpful. Maybe he can get it switched.

[LSAT]

If you want to be even a little successful you are going to need a change in attitude..try to be positive. We all change our own pressures. The supplier cannot lock you out. You just have to know how..it takes about 10 seconds. You can go here and request the Clinical Manual for your machine...then you will know all the secrets. https://www.apneaboard.com/adjust-cpap- ... tup-manual

[chunkyfrog]

How long since you have seen your doctor?
Your condition may indicate a more advanced machine now.

[pizzafan]

if you can, please see your doctor again!

good sleep is always worth it.

[palerider]

I'm new, so forgive the amateur. Not that you should care but I'm enjoying end stage congestive heart failure.

My brother has had CHF for four or five years now. When I saw the data from the CPAP I loaned him (his didn't have data), and I told him to get to a cardiologist RIGHT AWAY, his ejection fraction was around 15%.

He's been on his Resmed ASV for about 5 years now.

Have had my Respironics Nightmare Station since June of 18 and ready to shove it where the sun don't shine.

That sounds mighty painful.

So the question...is it really worth it?

Maybe you need a different machine, because you're *NOT* being treated properly by yours.

Not like I'm going to survive life

None of us are going to survive life, it's a terminal disease.

So, you might as well just not even factor that into your thought process.

[chunkyfrog]

Never give up.

[Robo Pop]

Thanks for the feedback.

Since Sleep Apnea tends to go hand in heart with congestive heart failure, I figured the long timers here wouldn't need much detail. However just to clarify a bit, my hearts a train wreck and the Cardiologists office even has a pool going on when I'll take my final breath. A little PO they won't let me in the pool out of fear I might cheat.

So bottom line I'm on comfort care, which is just like hospice but fewer nurses around my bed. My Cardiologist ordered the sleep study and said my numbers were awful. Thought a CPAP would help overcome some of the effects of APNEA you are all so intimately familiar with.

Long and short, it's been a PIA from the moment my Cardio wrote the scrip.

When I realized it wasn't working for me I contacted the supplier and as I said got the cold shoulder quite like my wife gives me now days. I've already had to learn too much medical crap dealing with my heart disease and am not looking to be an expert on hacking this thing just to get some peace near the end of my life. I would have thought the medical community would be more respectful toward patients, aren't we why they are in this business?

Anyway yeah maybe I do have a bit of attitude but if you had any clue what I've been through Lsat just might not be so judgemental.

Thanks again for the feedback, I appreciate people taking time away from other endeavors.

[bwexler]

I had a friend back in the 70s. He had heart problems and was told he had 6 months to live, when he decided to move to California where I met him. 10 years later I lost track of him but he was still going strong.
I seldom believe medical professionals, especially those with bad news.
Look for a bright side every day. Hang around here and learn how to control your Apnea.
Maybe then you'll develop the energy to work on your heart. Who knows you may live long enough to grow old, what ever that is.

[Miss Emerita]

You’re in a hard place, and I’m sorry. Can your cardiologist recommend some more comfortable settings for you? If so, I know the folks here could explain the few simple steps that would get you into the locked part of your machine so you could just change the settings yourself.

[raisedfist]

With an AHI of 14 it means you are effectively being poked with a stick all night, meaning your sleep is very, very poor. Not even the most healthy person on earth would feel well after repeated sleep deprivation.

Make a promise to yourself to put in the effort to optimize your CPAP therapy and see if it makes you feel any better. If the therapy becomes good and you still feel like crap, feel free to chuck it out the window at that point. Until then, what do you have to lose?

[Grace~~~]

Hi Robo Pop~~~

When facing death, *My Priest* told me, { ~~~grace, only God knows }

*I* believe.

I think the feeling of breathing as well as you possibly can and sleeping safely and soundly has value. It for sure will lessen anxiety.

On my machine the secret handshake requires pushing two buttons simultaneously and having a seven second attention span.

It is about all I can muster ... but I got in and I am breathing better.
It's not the doctors fault that these awful DME things exist.

Is it?

[tarpatel]

Hello Robo Pop, don't give up, as others have said you just need better support from your doctor and supplier. And if you don't get it, find a different one. because i was like you but now my events per hour rarely goes over 2!!! once you get your setting dialed in you won't go back.

[Dan_McD]

If you decide to jump in and take control of your apnea, you just might lengthen your time here on earth. Who knows? You might even be able to help someone else. I think I'm on day 140. I have never failed to wear my mask.... the fifth one BTW. I have never heard from the person that fit my mask some 5 months ago, I can't get the neurologist to send me 2 reports I asked for and the DME is only trying to get me to pay more than I owe her.

Once I learned the two button dance and have spent months adjusting settings, I at least have found out what doesn't work. I'm getting pretty close to full nights sleep about 2 or 3 times a week. Frustrating? you bet, but for me it is better than the alternative. No one can fix this for you. You can get real good help here, but you are the manager of whether you die, or live a little bit longer. Your choice.