I want to be an advocate.

[GARYHRX]

Since watching this chat forum and the chat forum on the website for the American Sleep Apnea Association I have noticed 3 things:

1. An overwelming appreciation for the forum format to ask questions and share ideas
2. Alot of frustration from ill-fitting equipment resulting in home-grown fixes like mouth taping
3. And alot of comments about DME suppliers who are only out for business and profits.

As a pediatric pharmacist and RT for 35 yrs and cpaper for3 yrs. I have compassion in my bones. I've also been called a bleeding-heart liberal and agitator. I'm guilty on all counts. Reading these posts has made me resolute to join my local AWAKE support chapter and try to help those of us who are delighted to be diagnosed but frustrated by resistance to our own efforts to better understand our disease process. An educated consumer, both medically and economically, is truly a force to be respected.

Please share your thoughts.

[drummergirl410]

Hear, Hear! Very well said!

Just today I find myself being thrown into the role of advocate yet again. I am used to self-advocating due to my blindness but this whole game of doc/patient/DME is new to me. Still, I am as resolute to see this thing through. I'm also considering joining a support group, something I wasn't very keene on earlier, but now have changed my way of thinking. I'm a very non-confrontational person by nature, sometimes to a fault. But after my recent experiences, to heck with that! I'm ready to kick butt and take names after if that's what it takes!

[amandalee]

GARYHRX- Ok, your first mission as an advocate is to call my DME and yell at them for me. Just kidding (sort of).

I think it's great that you care and want to help people who are suffering from this. After 5 years of complaining to various doctors that I'm "tired all the time, no matter how much I sleep," and having them not listen, but just prescribe some antidepressants and shove me out the door, I was really angry. I decided that if I ever started feeling better, I wanted to increase awareness/be an advocate for OSA as well. Awareness and advocacy are definitely needed for this condition. Unfortunately, I wouldn't know where to start, and I barely have enough energy to even advocate for myself.

Dealing with DMEs almost universally turns out to be a total nightmare, even if you're lucky enough to have a good doctor who is willing to help you. Being so tired and feeling like crap makes it all even harder.

Anyway, good for you for wanting to make a difference in the world.

[gasp]

Your assessment seems right on to me - and - as patients we tend to have a 'herd' mentality and aren't used to overly advocating for ourselves. I think members of this forum grow this skill by osmosis if nothing else : )

I came to this forum before titration to learn all I could so that I could advocate for myself. Everyone's help led me to getting the machine I wanted and much more. I was able to put the mask on my face and stay on it every night with the exception of possibly two times I took it off and went back to sleep instead of taking care of rainout (no longer an issue).

Anyway, I'm here cheering you on!!! (clapping wildly)

[lilsheba]

I'm only a month into treatment myself and I've also learned a lot on this forum, and I thank everyone who helped me make sure I got the features on my machine that would be the best to have. I've learned a lot of info (including the tip about mouth taping which I didn't know existed before) I've been compliant every single night. If I get a chance to advocate for someone I will.

This is a much bigger problem among people than I ever knew, but with luck and work maybe more people can get treatment.

Jeanine

[Kattitude]

I found this forum after I had my sleep study and before I got my machine. For years I had been dealing wiht excessive tiredness and head aches. After doing an online search for "why am I always so tired?" I had to finally ask my Dr for a sleep study. Once I got my CPAP, I saw a huge difference in the way I feel. Since I've been able to read others posts here, I have learned a lot. What I have learned has been helpful in encouraging others to get a sleep study. I find that there are often excuses when you try to convince some one else to get a sleep study. But using the knowledge I have gained from this forum, I can come back with an accurate reply to those excueses. For example, my dad said he would sleep good if he just did'nt have to get up and go to the bath room every hour on the hour. He blames it on prostate problems (which he is tested for regularly). I was able to tell him that frequent night time trips to the bath room are often a sign of sleep apnea. Next excuse was that he had other (knee) problems that he wanted to get taken care of first. I was able to tell him that it was unsafe to go into surgery with out proper apnea treatment and that his healing time after surgery would go better with apnea treatment. I wouldn't have known those things without this forum. I'm still working on getting him to schedule a sleep study (even wrote it on his "to do" list I found lying around).

I want to thank all of you for the questions and answers you have posted on this and other forums, it helps educate us so we can help educate others!

Kattitude

[gasp]

[quote="Kattitude"]I found this forum after I had my sleep study and before I got my machine. For years I had been dealing wiht excessive tiredness and head aches. After doing an online search for "why am I always so tired?" I had to finally ask my Dr for a sleep study. Once I got my CPAP, I saw a huge difference in the way I feel. Since I've been able to read others posts here, I have learned a lot. What I have learned has been helpful in encouraging others to get a sleep study. I find that there are often excuses when you try to convince some one else to get a sleep study. But using the knowledge I have gained from this forum, I can come back with an accurate reply to those excueses. For example, my dad said he would sleep good if he just did'nt have to get up and go to the bath room every hour on the hour. He blames it on prostate problems (which he is tested for regularly). I was able to tell him that frequent night time trips to the bath room are often a sign of sleep apnea. Next excuse was that he had other (knee) problems that he wanted to get taken care of first. I was able to tell him that it was unsafe to go into surgery with out proper apnea treatment and that his healing time after surgery would go better with apnea treatment. I wouldn't have known those things without this forum. I'm still working on getting him to schedule a sleep study (even wrote it on his "to do" list I found lying around).

I want to thank all of you for the questions and answers you have posted on this and other forums, it helps educate us so we can help educate others!

Kattitude

[Guest]

I guess I'm a fortunate one. I have a reasonably decent DME (at least they do what I tell them too -- so far). I also have an excellent Doctor who has embraced the fact that I've loaded my "guns" and when I make arguments I make them with graphs, numbers and the like.
I have always felt that knowledge is power -- and in our situation it is even more so.

I was on a standard CPAP at 5cm (Huh????)....After looking at machine reports (AHI was moving between 11 and 15, but not going down), printing them out and talking with the Doc, she prescribed me a APAP with a range of 7-15.....The DME started to balk at providing the APAP because their profit margins would be compromised (they said so in so many words) -- the billing codes for the CPAP and the APAP are the same (as RG says, it's a CPAP machine that auto-titrates!!).
I basically told them I wasn't concerned with their profit margins and that I wanted the machine that the Doctor had prescribed. That's the last I heard any arguing -- I have my APAP.
I tried it with the prescribed range, but the change in pressure appeared to give me NR's, and based on my two sleep tests I decided to set it at 10cm H2O in CPAP mode and lo and behold, my AHI is lowering consistently and is now at a 3.2. I had to try reallllllly hard not to monkey with it and just be happy with 3.2 for now (I tend to be a tweaker)....I may adjust it by .5cm or 1cm, but not for a while.....I did break one of my own rules however in that I didn't tell the doc yet that I did that. I will when we talk next, but thus far she has supported me in everything I've done, said and presented to her -- All of that is really thanks to this group.

Anything anyone can do to advocate for this condition we have is a welcome breath of fresh air. As some have already said, we've essentially learned to advocate for ourselves out of necessity. If the condition would be recognized more often as what it is instead of, Depression et. al. it would be a great stride forward.
When a patient comes in complaining about being tired the FIRST thing the doc should think of is "Sleep test" -- eliminate apnea first.

More power to ya GARYHRX!!!!! Please -- stay with us and keep us up on your progress and what issues you are running up against.

Thanks for your compassion!!!!

cheers
goose

[Guest]

argh!!! Did it to me again -- I'm logged in as me (goose) and it posts me as guest....
Hope it gets fixed soon!!!!!!
cheers
goose

[rested gal]

When a patient comes in complaining about being tired the FIRST thing the doc should think of is "Sleep test" -- eliminate apnea first.

Amen, AMEN!!! AMEN!!!

[Susanm]

If the condition would be recognized more often as what it is instead of, Depression et. al. it would be a great stride forward.
When a patient comes in complaining about being tired the FIRST thing the doc should think of is "Sleep test" -- eliminate apnea first.

In the August issue of Reader's Digest, in the Health IQ feature, one of the responses to the problem of middle of the night waking was to screen for sleep apnea. But .... the "pro" mentioned treating sinus and allergy problems and losing weight as fixes, but didn't mention xpap. People act like it's a dirty word or something.

Susan M

[lvwildcat]

I am a Critical Care RN;using CPAP almost 2 years and I am the coordinator of the Southern Nevada A.W.A.K.E. group. I am an advocate EVERY day(or at least try to be) There was nothing more frustrating than when I had equipment issues and I got very angry at the DME RT and I snapped at her- "how long have you been using CPAP?" her answer was "I've never used it" Case closed!!!!
PS-lilsheba- I'm still soooo in LOVE with your avatar!!!!!!

[gasp]

argh!!! Did it to me again -- I'm logged in as me (goose) and it posts me as guest....
Hope it gets fixed soon!!!!!!
cheers
goose

Do you have the ~log you in automatically every time you log on~ selected? If not, I wonder if that would help? Just a thought : )

[Guest]

Hey Gasp, Yeah I do....it's at least logging me in fairly consistently, but you'll see from this post, it still posts as guest.....Interestingly if you look at the list of "who's browsing the forum".....I'm listed, but I can't post under my name/login.....I'm sure Johnny is working on whatever the problem is. I sent him a PM a bit earlier, but I doubt I'm the only one or this is the only issue -- I still don't see the little "N" characters letting us know there's a new post on a listing....

Thanks for the suggestion!!!!
cheers
goose