What would you change?

[wading thru the muck!]

If you could change one thing about the experience of getting diagnosed and treated for OSA what would it be?

[Guest]

I would tell my doctor from the get go that I prefer to select my own DME, be it local or online, and to please prepare the prescriptions for my personal pickup.

[rested gal]

wow...interesting question, Wader.

Since I diagnosed myself and picked a machine to treat myself, I wouldn't be able to answer that very well. The only "doctor" involvement was calling an old family GP and asking him to fax me a prescription - no study, no exam, no...nothin' except his willingness to believe I knew what was wrong with me and what I needed.

Thinking in general though, the #1 thing, imho - All doctors should become more aware of the possibility of sleep apnea even if their patients are not complaining of tiredness or "sleep problems".

[christinequilts]

That's easy- I wish one of the many doctors I saw over the year for fatigue and problems sleeping would have done something more then prescribe antidepressants and sleeping meds. My Central SLeep Apnea started for some unknown reason when I was 19 but I wasn't refered to a sleep doc until I was 31...and it was a nurse practitioner who sent me- not a MD. Looking back I lost a lot of my youth to this disease- years I can never get back.

[LDuyer]

I for one agree with Christinequilts. I wish my primary care physician had been more vocal in insisting I go to a specialist to be tested. He did mention it, casually, then forgot it during later doctor visits. I didn't really understand how serious it was. I wish he had been more aggressive about it with me. A few well placed words might have saved me a year's grief.

Great question/topic, Wade.

[littlebaddow]

The very long wait to get a sleep study and see a sleep specialist on the NHS, but that's a UK thing. Translates internationally to better awareness throughout the health profession of the condition.

[Waverly]

Hello littlebaddow,
Uh, Um , Have you talked to Jean19540_0. She is apparently very sharp when it comes to NHS. She has become an expert at manuvering thru the minefields of the NHS. Nothiing but praise for it now. Perhaps she could give you a few pointers. I'm happy to hear that you've finally been treated. You must be feeling much better. Isn't it awfull that you must depend on a bunch of pencil necked bureaucrats to get the treatment you so desperately need. Sort of like dealing with a ultra megga sized insurance company. The important thing is that you've finally got it. Hope you feel well now.

Good Luck,

Waverly

[-SWS]

If you could change one thing about the experience of getting diagnosed and treated for OSA what would it be?

Without question, I really wish I had gone in for a diagnosis many years before I finally did.

A much less realistic wish would have been for both society and modern medicine to have already thoroughly embraced sleep science by now. Scientific discovery, sleep disorder awareness, diagnostics, and treatment would thus all be more refined than the present. But that's just a pipe dream and doesn't count in any sort of reality-based poll.

[BreatheRite]

I wish GP's would look at the possibility of Sleep Apnea when people develope things like high blood pressure. I have probably had apnea for 30 years but it only got worse in the last few years. I had to suggest to my doctor that maybe I needed a sleep study.

Herb

[Popinka]

SWS stole the words out of my mouth.

[Janelle]

1. faster availability of sleep test between visit to GP, referral to ENT, then to Sleep Dr who ordered test. This took me about 6 weeks of stress and worry about my condition.

2. Communication in a timely manner between drs and patients after testing and results are received. My second sleep study with CPAP was done in early Nov. and all I ever heard (by phone) was you had all 4 stages, no snoring.

3. Faster coordination with DMEs (if necessary) and insurance companies for approval of equipment. Another month went by before I had my equipment.

4. More DMEs who will let you try various masks over several days and not give you the old "we can't disinfect them so can't reuse them, and you have to buy it NOW" line.

5. More realization among the general public and doctors in general practice, too, that snoring is not a benign, irritating, or even laughable condition. It is a serious, potentially life-threatening condition that needs diagnosis and treatment sooner rather than later.

6. More people with daytime sleepiness who realize they are not only endangering their own lives but the lives of others when they drive sleepy and don't STOP and PULL OFF THE ROAD! And I'm as guilty as others on that. One half second later when I fell asleep and jerked awake, and I and several others would have been dead. Luckily, I awoke just soon enough and only side-swipped the other vehicle.

[CPAPNAP]

Of the NUMEROUS things I would change about my diagnosis and treatment of Sleep Apnea, the ONE THING that tops the list is the unprofessional lack of comprehensive care.

My GP is clueless about Sleep Apnea and therefore has not even mentioned a treatment plan. My Cranial Osteopath who suspected Sleep Apnea and referred me is a specialist and not interested in managing my care. The Neurologist at the Sleep Clinic saw me all of 10 total minutes over three visits and clearly could care less about my care. And, the Home Health Care place that issued my CPAP was as personal as a Soviet institution.

So here I am planning my own care. Alone. Reading. Experimenting. Hoping.

[felineperson3]

I wish that at least one of my former attending physicians had picked up on some of my symptoms such as my development of hypertension and my husband voicing his concern on several occasions to these physicians about my interruptions in my breathing when I was asleep which alarmed him. Instead, I was just prescribed increasingly higher doses of medication for the hypertension--treating the symptoms rather than trying to find the cause. I have been married for 48 years now and according to my husband I have had sleep apnea for this long. It's better to be diagnosed this late rather than never, I suppose, but I'm sure I could have had a better quality life and more energy with raising my 4 children if I could have had an earlier diagnosis followed with the proper treatment. I cannot undo the past so I'm just thankful the physician I am going to now recommended it and that the apnea is now being treated.

[Waverly]

CPAPNAP you are not alone. On this board you have the greatest collection of non professional cpap experts . We have Rested Gal the helper. SWS the technical GURU, Wader, keeper of all knowledge on the board. And the rest of us . Misunderstood , misdiagnosed and misguided misfits, banded together to right the wrongs inflicted upon us by the institutions of medicine , money and mediocrity. I have a dream that some day we will rise up and crush these institutions and remake them into careing compassionate caregivers unselfishly putting their patients well being before their billfolds. Yes it is us who scan the internet searching for the truth to set us free from medical malpractice, malfeasance and bafoonery. Us who come to the aid of others in search of the truth. We do this that others may sleep. That others may live to carry the torch of knowledge and live to pass this knowledge to the next generation of apneaics. So they may not be subjected to the abuses as their predecessors. We do thiis that others may sleep a restfull sleep, full of dreams, and wake refreshed and rested.
You are not alone CPAPNAP. Hope is here.

Waverly

[Irving]

LOL Waverly. Sounds like a bit of Churchill, King and The Black Sheep all rolled into one.
As for me I wish the medical morons had reversed the list and put sleep apnea at the top of the list instead of bottom after depression, fibermylgia, ADD, phycosomatic and antisocial disorder . Hell they didnt think of it until my wife suggested it. Then they blew her off for another year. Idiots

Cheers

Irving (the expat)