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If you had two pieces of advice to give a newbie....

...what would those two pieces be?

A lot of us would really benefit from the been-there, endured-that experience you veterans have to offer us.

AND....

Happy New Year!

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Please don't give up. My brother nearly died because of sleep apnea and I know in my heart that although the bipap gave him 10 more years of life, he still lived a shorter life than he might have otherwise. I think knowing what happened to my brother was the only thing that kept me trying cause I hated my cpap until I finally gave up and went back to the RT at my dme and she fit me with a whole new mask Didn't even realize I had options. They just kind of issue you stuff without explaining or checking to see if something is going to work for you. I saw one guy's standard signature and I liked it. Said something like, "Go ahead, don't use your cpap. But if you don't you may need to invest in burial insurance." Sobering thought. As John said, don't give up.

Kristi Halsey said:

Thank you so much for your encouraging words.  I am in the beginning stages of trying to get used to sleeping strapped to a machine and have been having just as hard of a time mentally getting used to the idea as physically.  I have wanted to give up, throw the machine out the window, and scream in frustration, but reading posts like yours helps me to calm down and keep on keeping on. 
 

OMG. What happened to the part about helping people when dealing with medical stuff. How infuriating

ZolliStar said:


The woman is to be praised to making your needs the needs that counted. Too bad the company had no idea what a valuable person was in their employ.


My Sleep APnea said:

After talking to the person who helped me, she went against her employers orders and sent me out the door with a brand new up to date machine that worked, It cost her her job.

Patience - finding a mask that works for you and getting used to the mask takes time and a lot of persistence - hang in there!!!

Don't expect others (family/spouse) to fully understand what it is like to have sleep apnea.  They have never lived life on a 1/4 tank of energy and have no CLUE what it is like to "sleep" but still not feel fully rested.  I think this has been one of my biggest frustrations - dealing with others "perceived" view of my sleep apnea and asking "how can you sleep so much?   or...."you're sleeping your life away."  Quite insensitive, and very uninformed.

Karen, Good point, my wife used to say just close your eyes and go to sleep, she didn't understand that I couldn't breathe.

My 2 cents for all CPAP newbies: 

1. Stay on the boards for the best advice, sometimes even better than your own doctor or durable medical goods supplier can give you.

2. Change doctors/DME providers if you are still having trouble and what they are doing/not doing goes against what you think is best for you. Not all doctors/providers are all that good. And if you are lucky enough to have good ones, thank them.

As both a CPAP user, and a Registered Respiratory Therapist, I wil give you two pieces of advice.
First, mindset is everything.. Sleep Apnea is not a weakness (men), it is a medical condition that often
preceeds weight gain, and can be worsened by weight gain. Your view and full understanding of your
condition is paramount. Understanding it helps you accept it. Once you have accepted it, you can then
own it. This will help you when you wear it. My pressure was 17cm to start with, so I understand the struggles
you will be facing. I can honestly say that I used my CPAP all night the very first night, and have never looked back.Second, prepare yourself. This is a lifelong commitment that will change your views on sleep, and how important it is. If you arm yourself with these two facts, you will be greatly helped in this area.
I do want to let you know that I worked with a DME company for 2 years, and I encountered many people
with a condition known as CPAP failure. It exists when a patient has difficulty exhaling against the pressure
the CPAP delivers, and is marked by a feeling of suffocation, and ripping the mask off during sleep. There are
other indicators, but these are hallmarks of this problem. If you want to know more about this, please
feel free to email me at rtman0509@gmail.com.

Paul, thank you for making yourself so available for those who suffer from CPAP failure.

I absolutely agree with you: Mindset is, indeed, everything. I have every intention of finding a way to live comfortably and well with my CPAP machine. I also know that what I'm going through now is the early adjustment period. Eventually, I'll have everything battened down. I'm just about there already, in fact -- thanks in no small measure to people like you and others on this forum.

yes zollstar, sad, but even sadder, true. The business used to be a great place that offered weekend delivery of medication and supplies to disable and home bound people, those who lacked transportation and even on occasion anyone else for that matter. The business has been around for over a hundred years and was built on personal service. But the two folks who started this exceptional business have passed, and left the business to the children. little appreciation is shown for the hard work and commitment that has been the hall mark of this once awesome business. Greed has always been the driving point for the now owners of this business.The oldest now running the place and the father (co-founder) argued all the time over policies and profits. Oldest and now running the place was always for profit and limited service because it saved money. But little did he understand or even care that this practice that made the business so successful is the very quality that will  keep it growing and bring in new customers..

They like their fancy cars and very expensive homes. Far more than the values that shaped the  success of this business. Sad to see it go to the wayside for profits and at the experience of all their forefathers did  to make this one of the formerly best businesses in my area

Lynn said:

OMG. What happened to the part about helping people when dealing with medical stuff. How infuriating

ZolliStar said:


The woman is to be praised to making your needs the needs that counted. Too bad the company had no idea what a valuable person was in their employ.


My Sleep APnea said:

After talking to the person who helped me, she went against her employers orders and sent me out the door with a brand new up to date machine that worked, It cost her her job.

FYI, re mask liners, a cheaper alternative, I bought some Resmed liners a 6 pack and although they say to only use them once you can wash them and get about 5-6 uses. I then made a template of what I need and then went to a fabric shop and got 3 ft of 50% cotton/50% poly fabric and cut out my own and they also last 5-6 uses, the next time I bought 3 ft of 50% cotton/50% licra fabric. That last me about 3 months and costs about ten dollars. Also on the Vicks Vapour rub, I use it as well but smear some under my nose and on my chest each night whether I have a cold or not. I believe it should be only used by straight CPAP users not BiPap users.

Use distilled water.  Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).

I have been using my APAP for 3 years.

1. Don't expect your doctor/your DMV to be your support on using your CPAP. YOU have to be your own support. Read books, ask questions, log on to this forum and read everything. You have to learn to help yourself.

2. Remember each and every night WHY you have to wear your mask. It is a bother at first, annoying at best. But having your life, your energy, your health, all of that is worth being annoyed while you learn to use the CPAP. And it is learning, just like anything else we do that is new.

A six-foot long brush! Wow, where does one buy that? I'll do it, pronto.



Brett Husebye said:

Use distilled water.  Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).

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