"bamboozled" Mother update

[bailachel]

Soooo, after much effort on my mother's part (see previous thread), the DME finally sent a Respiratory Tech (instead of the sales supervisor) out last week to deliver the PR1 Auto that she has spent several months trying to get to replace her PR1 Plus. He showed her how to see the (limited) data on the LCD screen and set her up on auto with a range of 4-12. ah well. Since on her previous CPAP the pressure was set to 6, and 4 is so low it is hard to breathe, I talked her through changing her minimum to 6. (more on this later)

He also brought her new pillows and worked with her to determine the correct size. As we had suspected, she needed the medium rather than the small they had originally given her. While we were on vacation together, I discovered that since no one had spent the time to tell her how to use them, she was stuffing the entire pillow into her nostrils! She was leaking continuously all night but couldn't hear it once she took off her hearing aids to go to sleep. (but I could) I showed her how to use them which helped, but since they were too small, they still leaked somewhat when she moved around.

So she called me tonight and.... things are looking up. She doesn't have the software yet but with her new equipment her Avg. AHI is 1.6, she has 0 large leaks and 0 periodic breathing. Interestingly, her 90% pressure for the 7 days is 7.6. (not the 6 from her titration) So much for the DME who didn't want to give her the auto, and the Dr. who didn't want to see her until January and didn't want her to have it either. He only wrote the new prescription because she insisted on having the data capable machine. Those of you who saw my previous thread will remember that his nurse said "Well, I hope you and your daughter are happy now." To which, at this point, I will answer YES!

I am happy that my mother should now be getting better therapy. Having a mask that should not leak as much since it is the correct size and a machine that will give her the appropriate pressure as needed and let her know if she is having leakage issues (albeit after the fact) should make a big difference for her.

Interestingly, the tech congratulated her on being persistent. He told her that the Dr. and the DME (for whom he works) only care that she is compliant and it will really be up to her to monitor her own treatment. Crossing my fingers for her. So far, so good.

[sleepycarol]

So glad that you were there to help your Mom!!

Kudos to her for sticking to her guns and getting what she needs in order to get the most benefit from her therapy.

[Hospiceangel]

Good for you.
Sometimes you have to be (excuse my french) the daughter from Hell but it works.
Keep posting.
Shar

[kc5tty]

WAY TO GO!!!

Be proud of yourselves. I had a little bit of trouble with mine but if you put your foot down they realize that you're not a pushover.

Congrats and keep up the good work (and the therapy).

steve

[bailachel]

Thanks guys! It was the information that I learned from this forum, and shared with my mother, that enabled us to do it.

[rested gal]

Good going, bailachel...both you and your mom!

For new readers, here's a link to bailachel's topic:
My mother is bamboozled by her "very nice" DME.
viewtopic.php?p=490387#p490387

[torontoCPAPguy]

The first rules of CPAP/APAP therapy:
(1) Be your own advocate.
(2) Be as persistent as a pit bull and let them know it.
(3) Learn all you can about your own treatment and needs and do "whatever it takes".
(4) Go to (1) and repeat.

Simple enough. Huh?

Congrats on being your own advocates and on improving your treatment by 500% - the job isn't done yet, the adventure is just beginning!