Coping with knowing this is forever? How do you do it

[Jay51]

Great story Stacey.  
You asked what is the best way to find a new DME?  You are in NY.  Your insurance should have a list of all the "in network" DME's that you can go to.  You could go to your PCP and ask for a change.   Can call your insurance directly.  If you can try to do some research on the DME's in your area.  The local RT here at the local hospital helped me a bunch when right after I had my sleep study done.  It was 6 weeks later, and the DME had not even contacted me (they were supposed to get me my 1st PAP machine after the sleep study).  RT called 3 other DME's and said she would go with the 1st one that responded to her call.  One did right away.  I got a machine very quickly and am very grateful for this particular DME I have now (and the RT there).  A visit to your local hospital RT for recommendations may point you to a good one; or possiby start asking friends, etc. (word of mouth).  Pulmonologist might know some good ones, etc.  Go online and look at the ratings of each DME you are considering, too.

[tierdal]

Great story Stacey.  
You asked what is the best way to find a new DME?  You are in NY.  Your insurance should have a list of all the "in network" DME's that you can go to.  You could go to your PCP and ask for a change.   Can call your insurance directly.  If you can try to do some research on the DME's in your area.  The local RT here at the local hospital helped me a bunch when right after I had my sleep study done.  It was 6 weeks later, and the DME had not even contacted me (they were supposed to get me my 1st PAP machine after the sleep study).  RT called 3 other DME's and said she would go with the 1st one that responded to her call.  One did right away.  I got a machine very quickly and am very grateful for this particular DME I have now (and the RT there).  A visit to your local hospital RT for recommendations may point you to a good one; or possiby start asking friends, etc. (word of mouth).  Pulmonologist might know some good ones, etc.  Go online and look at the ratings of each DME you are considering, too.

Ever dme I Google has 1 star. It's like they are all run by crooks and thieves. That's why I was asking here, was hoping some one else from NYC had figured it out

[Sleepster]

I clean the nasal pillow, that's about it. Nothing the gets dirty and I replace the stuff every 3-6 months

Your water tank may get slimy. And you need to clean the tubing on occasion.

[tierdal]

Your water tank may get slimy. And you need to clean the tubing on occasion.

never had any issues with tank, def never slimy, that would be gross

the tubing never smells or has anything inside it so i stopped washing it years ago. just replace it ever 6 months.

is this bad?

[arkona12]

I am still new to it, but I am noticing that my routine is developing, and it doesn't take that much more time. I tended to lay down and not fall asleep for 20-30 minutes anyway, so now I use that time, really less, at the most 5 minutes to fill my water tank, and setup my mask. I am pretty nervous about traveling with it, my first trip is in September, but I have confidence my routine will be pretty dialed in. I wish you luck!

[mesenteria]

sometimes I can't believe I have to strap stuff to my head EVERY night

buy distilled water every few weeks

follow up with DME constantly, cause they are always messing something up

anyone else feel the same? how do you deal with it?

I haven't read all the replies, so everyone please forgive me if I repeat something:

You are going to LIVE the rest of your life, so...I don't see the problem with adding another routine that will let you actually do that.   Would you take nitro pills if prescribed to help alleviate angina...if you developed it suddenly?  Would you wear a Kardia or other monitor each night prior to bed to alert you to atrial fibrillation if you had known paroxysmal or persistent AF?  If you know you have oxygen exchange problems during sleep, and if that problem increased your chances of atrial fibrillation (happens to many of us), would the mask seem so bad?

You don't need distilled water.  Tap water, from any community, is perfectly safe and usable.  It might be hard, it might be unpleasant to drink, but you can use it.  Just empty the reservoir...without fail...each morning and replace the supply with fresh tapwater.  This will minimize the accumulation of dissolved solids appearing as a crust of crud around the inside of the water vessel.

I sympathize with the DME messing around, although mine only monitored for a while, and I was off and running. You may want to change DME for ask for them to make fewer changes.  If they keep changing things, you have either the wrong therapy or the wrong device.

I like life and living.  I mostly feel good.  My biggest problem was atrial fibrillation, and that was due to horrible sleep.  A sleep lab showed severe apnea.  Now, even having to tape across my mouth because of 'blow out', I sleep well, seem to dream more, my heart is finally in NSR...but only got there after an initial failed catheter ablation to destroy tissue in the lining of my left atrium around the pulmonary veins. If that sounds drastic and something to avoid...I couldn't wait for it.  I even had two of them since the first failed to limit the progression of my paroxysmal atrial fibrillation.  Thankfully, I am now fixed for the time being, but I know I have, like other AF patients who get ablated, about a 50% chance of developing further arrhythmia.  When/if that happens, hopefully after a few or more years, the electrophysiologist said he'd be happy take another look and do more for me.

Teach yourself to be happy that something CAN, and HAS, been done for you that promises at least some amelioration for you. Get busy doing other things, even taking up another hobby.  In time, you'll be more contented and more at ease.

[Deborah K.]

I use Aeroflow, an online DME. I never have to contact them unless I want to change my order in some way. Then I just call them to request the change.

[Sleepster]

is this bad?

No. A lot of people report doing the same or a similar thing.

[multicast]

sometimes I can't believe I have to strap stuff to my head EVERY night

Sometimes I can't believe I have to put on my glasses EVERY time to read properly.

SNCR,

Mike

[Rcgop]

How do I cope? It’s just a routine, like brushing your teeth, or taking a shower before bedtime, or getting dressed in the morning. I only talk to my DME once a year and that’s to order new supplies, my sleep Dr. is also my GP, and I buy bottled water regularly anyway. Every Sunday, I throw my equipment in a plastic tub, fill it with hot water and a squirt of dawn, then rip the sheets off the bed and throw them in the washer, come back and rinse my equipment and hang it up to dry. 
It becomes just a part of living and living better is an added benefit.