Encouragment for newbies

I am some what new but not so new. I am posting this for the newbies to SA. I was diagnosed about four years ago with sleep apnea slightly worst than mild. I was set up with a machine and tried several different masks. I had a terrible time with the mask and nasal interfaces. I could not get one that would not leak badly or blow in my eyes. I tried to stick with it for amout four months. I started off with a standard cpap and went to an auto unit. I eventually gave up. The last straw was being told by my DME supplier that I would have to live with the mask leak and it blowing on my eye all night.

I went to my doctor this past fall for a yearly physical. I am fortunate that my employer pays for a complete physical and stress test each year. My doctor said your blood pressure is getting high to the point I may need meds. He said you really should be treating your sleep apnea with cpap. I agreed and he wrote a new presecription for a machine and mask for me. I did need a new titration test so he wrote a script for that.

I was put on a BiPap machine during the test and fell asleep. I slept the night without waking up once. I have not slept through in a night without waking up in years since I was probably in my early teens. I finally got my new machine and started using it. I was having problems now I wasn't sleeping through the night like I did at my test, I was waking up several times a night.

I talked to my DME supplier and took my card in for the info to be downloaded and asked about my AHI numbers which were in the hight teens. I asked if that was high and what should be done. Nothing was done about it and I was still not sleeping. I decided that since my doctor said I need to be on CPAP that I would do what I had to so this would work.

I went and purchased a card reader and software to read the data from my machine. The numbers were terrible. I asked the DME about it and still got nothing. I woke up in the middle of the night the week before last and noticed my mahing shutting down and the lights blinking and turning back on going up to pressure. I had also sneezed two nights before and the machine had shut off and showed needs service on the screen. Even with my machine set to off for mask off shut down it still shut down when I pulled the mask away from my face to adjust it.

I called my DME the next moring and demanded that they look at my machine and the readings and replace the machine. They checked everything and said no you didn't make any changes to the machine. They thought I had changed something and made these problems occur.

Well four days later I had a new machine. I slept through the night again for the second time in about 25 years. I have since slept one more night completely and only had two nights were I had problems.

Now I never would have had those two nights if I had not been persistant. It is my health my body and my life being effected and I would not stand for the poor treatment I was getting. I stood up and got what I needed.

Hopefully all people new to CPAP read this post and realize sooner that I did that it is your health your body and life being effected. Be a part of your treatment and don't take being mistreated or bad equipment as the answer.

You are paying for this equipment it should work for you, not just to pad some DME's pockets. There are some excellent DME providers out here but all it takes is one or two bad stories to give em all a black eye.

Get involved in your own treatment. If you don't who will?

Great post, Gerry!

You're absolutely right:

Gerryk wrote:Get involved in your own treatment. If you don't who will?

That's great Gerryk!

It's very helpful and encouraging to new cpap users when stories like yours are shared here!

Sorry you had such a time with the DME. Most of us have been there! We hear you!

As a side note, I went back to the same DME/ sleep lab. The reason I went back there is that my doctor who is a family friend now has an interest in the place and also practices there. He wasn't very happy (with them not me) when I gave him the reason for not going back.
But I did take control and made things happen so it was better.

I have also looked to see what little things will help.

I have a cover for the hose going from the machine to my mask, I got the one with the zipper on it.

I got a hose holder so I don't get tangled up in the hose.

I have the software and card reader.

I ask questions on this board and other. I didn't find this board right away so I wasn't on here until later.

If you have a question ask it or you will never know the answer.