My mother is bamboozled by her "very nice" DME.

thanks drubin007! I got the information and will pass it along to her.

It is a familiar story, especially north of the 49th. here in Kanada. My sleep study showed I have severe sleep apnea. NOT. What I have is described by my respirologist (a professor emeritus at the local university medical school) as simply the fact that after spending three weeks on total life support my muscles including my diaghram muscles have atrophied; my diaghram muscles will be the last and most difficult to regain (but they are coming along just fine but slowly as predicted thanks) and that my lung capacity, due to the most severe case of pneumonia he has ever seen a patient survive has damaged my lungs... at the time I had regained 70% capacity and I may or may not ever regain more (yesterday was a scorcher in Toronto and we were out shooting for the day with #1 son... let's leave it at... I paid the price when I got home at 8 pm and am paying the price today too; I won't be going out into the heat). They apparently had to suction goop out of my lungs and I have, for lack of the medical explanation and terms... hardening of the bottom of my lungs and degeneration of the little bronchii inside my lungs resulting in reduced capacity to take in air and convert it to blood oxygen).

So, do I have severe sleep apnea? Not. What I have is simply that when I fall asleep my breathing gets shallow and my blood pressure skyrockets capped off by my airway collapsing to an extent and futher reducing air flow. Do I stop breathing? Since I have been collecting data that has happened on average of perhaps once a night at most and for only ten or fifteen seconds at most. However, my blower, originally a CPAP machine of the cheapest order (ResMed S8 Escape II) did not vary pressure nor collect data. Undergoing a second sleep study I was pronounced 'cured' and sent off to MediGas to get my Escape II. I walked out of there with my Escape (paid for by the government by the way) along with a $1500 VISA bill for upgrading my blower, adding humidifer, mask upgrade, training, long term warranty and adjustments, yearly inspections, and on and on. Lots of BS. Lots of money.

Got on this board and got educated. Went to an MD of respirology (actually went to two) and a cardiologist and an RT and so on. Got educated. Went back to ask to trade up to an Autoset II. NO WAY! I don't need it. Too late. Etc. Asked for a better fitting mask. No way.

So I found this forum and purchased two (one spare) Autoset II's and now S9 Auto's online. For less that 1/5 of what I paid up here in Kanada between the government, the insurance company and me. And my results improved immediately. Especially with the S9 which varies the pressure and is so comfy that last night I slept 9 hours straight and was ready (it felt sooooo good) to sleep another 9 if I could (I can't). I am reading my own data and being my own advocate and I don't take a second of crap from anyone treating me any longer. I want answers to my questions. I want empirical data and I want it now. Don't have it? GOOD. BYE.

The S9 is providing me the best results that I could have ever imagined. As a friend on the board says, looks can be deceiving. I am in love again for the second time in my life and it is with a machine. I am about to plug in the data and look at my graphs again, but what I am seeing is a whole lot of zeros and numbers under 1 (AHI) .. even perceived reductions in air intake on my part are well under 1 with my physical issues.

So, my point. You cannot trust anyone except yourself and those that care about you longtime. I love my doctors who take really good care of me and share all of the data they collect with regards to my well being - you do the same.

bailachel wrote:She is going to schedule a meeting with her neurologist to discuss the situation. Then she is planning to meet with the DME. I would like to be a fly on the wall for that meeting now that she understands what is going on.

I missed reading this thread before and haven't reached the end but feel compelled to post what I did - it may help someone;

The short story - I did a Google for "Living Wills CT". Found the state site for the Attorney General of CT and thought he would be trustworthy source for info in CT.
http://www.ct.gov/ag/cwp/browse.asp?a=2130&bc=0&c=19278

Selected the link for - APPOINTMENT OF HEALTH CARE REPRESENTATIVE
http://www.ct.gov/ag/lib/ag/health/adva ... arerep.pdf

Copy/Pasted the entire text into a Word Document, knowing I wanted to change some words to be perfectly clear that I would also have access to his medical records.

Printed out copies for my dad to review, which he did and agreed to.
Emailed the doc to an atty. - with dad went to atty.'s office where he explained to dad in detail what he was doing and agreeing to. The atty. - after putting the doc in their legal format - endorsed this one page doc on its face in a manner which I could make more copies (or email) but they would still be legal as the original.

This came in real handy when speaking with Medicare - I emailed it - YES, they accepted it
I also emailed it to a couple of his other docs when needed.

This was not Notarized with a raised imprint - I did not want that as he had many docs and I wanted to make copies. We never used the WITNESSES' AFFIDAVITS page. It is good to have more than one person appointed in case one is not available for some reason, vacation or illness come to mind.

I made 2 copies for each doc, DME, etc. I visited each personally handing them two copies and asked they sign and date one copy returning it to me. If they failed to date it, I just wrote it in. I actually used one copy for all the signatures on the back - that way they were ALL on one copy. Including Medical Records at the hospitals. Many places seemed kind of put off but I explained it was a cya for them.

I made a copy of the original with signatures and carried it with more copies in a folder. At the next and subsequent visits I always had a copy handy so they wouldn't have to go searching for it.

This worked well with all but one doc, who would now speak to me but I still had troubles getting past records. My dad liked this doc so I tolerated it for him.

I hope this helps someone else.

Is there an update on the status from the OP here?

GumbyCT wrote:Is there an update on the status from the OP here?

Coincidentally, this thread appeared today: viewtopic/t54443/quotbamboozledquot-Mother-update.html

Gumby, thank you so much for that link. I've got copies all printed and ready for witnesses' signatures tomorrow. I emailed it to my daughter who's an attorney and she liked the format very much(will probably use it in her own practice), but thought it might be a good idea to have it witnessed just for good measure. This is an important document I'll add to my records. Again, thanks.

PS: She did have me add that even if I am capable,I give permission to my attending doctors to discuss my medical situation with either of my children should they inquire.

Thanks Gumby! Dori, I like the addition that your daughter suggested.

Here's a link to a happy ending -- bailachel's followup topic:
"bamboozled" Mother update
viewtopic.php?p=508187#p508187

DoriC wrote:PS: She did have me add that even if I am capable,I give permission to my attending doctors to discuss my medical situation with either of my children should they inquire.

Excellent idea. I am sure she knows to add the legal names. Some docs will go thru great pains to avoid what they think may be a HIPAA violation. They are a bit gunshy. Proving someone is a child could be time consuming.

After showing my letter to a VA doc she asked me my relationship to my dad - I smiled at her and said with this it doesn't matter
Keep in mind for many years people thought we were brothers, so I am sure there is a resemblance.

oh the Medicare incident I mentioned earlier took place over several hours. I was calling to report what I thought could be Medicare Fraud. After be transferred countless times and being on hold way too long, I hung up thinking they just don't want to know.

ps. Dori can you ask your daughter if that "endorsement" by the atty. (so it can be copied) has a name it is referred by?

Gumby, I sent her a quick email and got a quicker reply,(busy, busy )"Attorney Certification". She said I didn't need it, "just sign, date and have it witnessed, send a copy to her, my son and my attorney and keep the original with my other documents". We'll be seeing our attorney soon anyway now that we have a new granddaughter in the family and I'll ask him about it then.(Shh, don't tell my kid) Of course I'm hoping that none of these documents will be necessary after all.

DoriC wrote:(Shh, don't tell my kid) Of course I'm hoping that none of these documents will be necessary after all.

You're like me I won't.

It's like buying Insurance - when you don't have it is when you need it. Of course the other side is - eventually we are all gonna need it. It's something we are all going to face and not talking about it won't make it go away.

DoriC wrote:"Attorney Certification".

I just wanted something so I could copy, fax, emale, or whatever and not need it to be notarized again during an emergency when it's too late.

Thanks