So I says to the Dr. What's wrong with you?

[Requis@home]

Diagnosed with Severe sleep apnea Thursday March 20th 2014 at age 44....and yes I am at the angry stage..though maybe softening to acceptance where this site is pretty terrific.

Heres my story of this past week...

So the Dr. Tells me based on my sleep study results that I have severe sleep apnea.....and that I likely have been living with the condition for many years. That and based on the information provided on the questionnaires that my condition is likely only treatable with a Cpap device.

The next part is awkward for me....where the Dr shares that if left untreated the end result is likely death...where the disorder is linked to a number of potentially related conditions, heart disease, high blood pressure, higher risk of stroke, obesity ( okay yah I'm not the ideal BMI poster child but c'mon it's only 35 lbs over) etc, Where the Dr keeps pointing out to the number of times on a graph that I stop breathing..I think she said 68 times an hour...and some other things related to kicking. Where I stop listening as I think of the ways I'm going to be checking out if I don't take this thing seriously....this last part is important when I wrap up why I'm here at the bottom.

I'm then informed that my drivers license may be temporarily suspended, which snaps me back..pa..pardon I retort. Say that part again as I'm now looking at the dr straight in the eyes. I think she gets that this part has gotten my attention as she back pedals... Well we don't actually submit your report until after we begin treatment so that when we do submit our file that we are also submitting that the condition is being treated successfully and that the apnea while under treatment will not affect vigilance and subsequently no need to have your drivers license taken away.... But what if it doesn't work or I don' responded well to treatment... Then what? Oh we'll cover that off when you come back in two weeks time for your CPAP orientation appointment....

I stammer back Two weeks....? But your office moved my follow up from august to this week where the message indicated it was urgent that I get back to your office to confirm this follow up appointment. Why would I have to wait two weeks?

...as now I'm thinking about the event that got me here in the first place a month back...where my wife in a panick had shaken me awake from what I thought was a restful deep sleep...now thinking we were being robbed or that the house was on fire as I am quickly coming to my senses...she's in a fit yelling at me repeAting you stopped breathing...you stopped breathing for a very long time...you scared me.....

...our staff are extremely busy and we don't have any available time slots. TO WHICH I RESPOND WELL YOU KNEW I WAS COMING IN TODAY LAST WEEK....where again the Dr back pedals and advises me that I have been living with this condition for many years and that another two week wait is unlikely to have any dire consequences.... To which I reply as I am now laser tuned in to what she is saying and thinking back to some of the other information I thoutght she had shared relating to stress, anxiety and I'm thinking I'm going to lose my shit on this person as I pull out my wallet and drop the credit card on the table... Stating point blank to her I'll take your top three machines and 10 of your most popular masks and hoses and what ever else most people buy. As most of you know, and I am quickly finding out it's somewhat more complicated than that but I was...we'll upset. So I don't accept her first pass response that No it does not work like that...So I says to the Dr what's wrong with you... You just laid out one of the most sensitive health situations I have ever been exposed to where I have no control over the situation because it's happening in my sleep, and your pushing me out the door to have me come back in two weeks????

And while I left peacefully after some time without any of the equipment that I have begun sourcing online.... I thought I would share to get some perspective... Any help would be appreciated as I'm both a little embarrassed about going back but still angry, and okay a little scared... And at home I'm DAd and the goto guy around the house...where I can't really let the family know how badly this is affecting me... Sorry for the diatribe and thanks for reading and sharing your thoughts advise and perspective...I think this is going to be a bumpy year for me.

Cheers

Requis

[Pugsy]

Welcome to the forum.
What equipment are you quietly gathering online?
Where do you live? Doesn't sound like the way it is done here in the US and it would help if we knew so we wouldn't be offering ideas based on something that doesn't pertain to where you live.
Are you purchasing items on your own or do you have some sort of insurance that will help?

[requis@home]

Thank you Pugsy!

I haven't actually purchased anything more looking at what folks seem to have for themselves and the pros / cons of their condition and life styles...for example I travel and have seen a number of posts on the Z1, and possibly another unit identified as a transcend...still trying to figure out what are the high end (not necessarily price) machines that seem to really address the issues that stem from the condition and its treatment. Trying to better understand Automated titrating versus manual Titrating, and what the pros and cons are to APAP vs CPAP as well as mask choices etc...Honestly over whelmed...more struggling with the I don't want to get this wrong side of the equation, and maybe I need more than 1 or 2 machines...

I live in Toronto Ontario Canada ( you may have heard of our Mayor - LOL)

I do have insurance that will help defer the costs, my reality is that cost is not really a factor, I just don't want to buy something and find out that there is a better widget that would have been a better fit. Coming from an IT related background I get that things are awlays evolving, I'm trying to get a handle on how quickly new innovations are being applied to this domain to see what researchers are coming up with....I've been scouring the internet since Thursday and have talked to all my Dr friends. to get their perspective and quickly found out there is the practitioner side of the equation which is really about the condition and treatment plan...and then the individual side of the equation which is lifestyle, emotional state, and forward looking adjustments one has to make to get past this first phase of just having been diagnosed.

Cheers,

Sleepless in Toronto,

Requis

[squid13]

You need to register for the forum so that you can send a private message or so that you can receive a private message.

[digitalepiphany]

Honestly, doctors see and hear a lot of shit. I'm sure that this isn't the first time that he/she has had a patient that got upset. Most doctors wish they could hire more staff and see patients on a timelier schedule, but a lot of them are forced to do with less due to insurance (Medicaid/Medicare in the US, for the most part).

My point is, I would keep doing your research online, but hold off on buying anything until you have your next appointment. I doubt you'll even see the doctor at that appointment anyway. If you do, a quick apology (sorry, I just kind of freaked out about some of the possible scenarios you mentioned if left untreated) should suffice. I guarantee that he/she isn't holding a grudge.

Also, if they try to give you a lower-end machine, mask, whatever, just ask them for a prescription that doesn't mention brand or model.

[JDS74]

Two machines come to mind:

The Respironics Auto BiPap 760 and
The ResMed VPAP auto Bi-level machine (I'm not familiar with their nomenclature if this name is incorrect)

Either machine can be configured as a straight single pressure CPAP as well as having bi-level functions.
They both will collect and keep therapy data on a SD card so you can look at and manage your own therapy.
I prefer the Respironics line and others on this board will chime in and prefer the ResMed line. The differences are small.

The travel regulations allow you to travel with your equipment and extra, non-counted carry-on luggage for not extra fees.
Both of these travel well.
Do not ever even consider checking them but insist on carry-on

[HerbM]

Why does he need a BiPAP or similar machine?

Likely his insurance will buy him another shortly.

Any APAP with data capability will likely get him by for now.

He said money wasn't really a problem but no point in throwing it away either.

[billgamble]

Requis, welcome to the board. My scenario sounds very similar to yours. About a year ago I was diagnosed with severe sleep apnea as you are. 65.6 episodes per hour. I too had to wait to see the Pulmonologist for two months. My friend had just gotten a CPAP machine and he said it made him feel great so I didn't want to wait. Two months was too long so I called back and asked if I could be put on a cancellation list where if someone cancelled and I was available I could get in. Well it wasn't a week that went by that I was able to get in. She set me up for a sleep study and I had to wait another two weeks. I was finally diagnosed and was prescribed a CPAP machine. It's a year later and I am doing very well, not tired during the day, sleeping better, and feeling better overall. Your doctor is correct regarding the wait. You, as well as myself, had probably had it for a long time and two weeks is not going to make a difference although I understand your anxiety to "git 'er done". Be patient and don't stress yourself out. Also, when you do get prescribed a CPAP make sure you come back to this board to let us know how you're doing and if you have any questions or comments. The people on this board are fantastic. It's like a gift from God with all the knowledgeable people that are here and are anxious to help you out in anyway we can. Just remember, be patient, this is not an overnight sensation although some people are lucky enough that it was for them. This is a treatment therapy and will take some time to help you out. Everyone is different as to how it affects them. Good luck and don't be a stranger!!

[BlackSpinner]

Since we are back up again - this is what I tried to post earlier:

First - welcome.
Second sign up and log in so people can send you messages.
Third - get a copy of your sleep study before you buy. There are two kinds of sleep apnea - the plain vanilla one where your throat collapses on its self and the exotic version where your brain forgets that you should be breathing. The first is easily treated with with a cpap or apap. The second is much more expensive and often requires an ASV.

Since money doesn't seem to be an issue for you I would get a good apap like the Resmed S9 autoset or the Phillips PR system 1 560 for home use and then get a travel machine. Apap can be set to run as cpaps by dialling in a narrow range. There is good software (Sleepyhead) for both those machines and lots of people here who use them.

Online in Canada there is clinicalsleep.com in vancouver. You have to sign in to get the reall infor and prices on Canadian sites. Our host cpap.com is great but not allowed to ship the above machines outside the USA. Buying online can be the difference of paying $1000 versus $2000- $3000. You may want to purchase the first round of masks at a local supplier so you can try them on.

[123.Shawn T.W.]

IIRC in Canada each province handles obstructive sleep (OSA) apnea treatments differently ... not sure of the actual details, but ... there are quite a few members here that are from Canada that will be able to help you out ... if you do decide to purchase outside of your insurance, I believe there is no duty for medical equipment imported from other countries (Like USA) I sent a APAP to a guy up there that bought an extra I had ...

Yes, you can die from OSA ... there are also other things you can die of ... if you don't already, in the mean time try to sleep on your side, or stomach, this may help you not stop breathing as much, or for as long ... but wont cure you!

ResMed S9 Autoset, or Respironics System One model 560 are good full data capable machines, ask your Dr about them ...

I got tired of waiting for Dr's, DME (Durable Medical Equipment) providers, and INS, after more than two MONTHS, I just bought my own!

[ems]

Requis... most of us have been where you are now. We heard the same things from our doctors and left their office scared and full of doubts. Keep reading here and asking questions. You'll get excellent advice.

Don't worry... you'll live long enough for your teenage kids to make you crazy, but later will give you grandchildren you'll adore. Hang in there... it's gonna be fine!

[MitzyG]

If possible, I'd get a second opinion. I'm sure you have sleep apnea. But after everything I've been through, I know that you need the doctor to be your 'partner' in this journey. This is not a diagnosis, here's the medicine...good luck! You need to trust that person to help adapt your treatment to you! I messed up, went to a crazy guy (didn't realize how crazy he was until he loaded me with a bad machine, didn't believe I needed adjustment, overloaded me with supplies that weren't right for me etc) I switched to a fabulous doctor who has questioned why my machine wasn't set to the recommended settings (and that's after I had increased it and told her so!). She's increased it twice and her settings are more improved compared to the originals and my changes. She says that if this doesn't work, she wants to try another test to see what's going on. I really believe that she cares more about me feeling better than her pocket book. She's not frightening...she just explains why she believes her way is the right thing for me and ultimately, I realize that she's probably right and that she's the doctor.

I've really never been in a situation where I truly needed me and the doctor to be working together on the problem. So if you question your doctor's behavior/attitude etc, I would try another. Sleep is a huge profit mechanism (at least in the US it is). So there are many doctors who do it for the money, not because they care. I got lucky...my doctor stopped doing internal medicine and pediatrics because she didn't want to be on call, working nights and weekends. Sleep medicine doesn't involve those hours and I think she actually doesn't work full time (maybe 30 hrs?).

[squid13]

If you do want to buy from from cpap.com or another place in the US you can always use one of those mail forwarding company's. They mail it to them and then they forward it on to you, that's how some people get around that problem.

[Requis@home]

Thank You everyone for your great advice!

Appreciate you all taking the time to help out!

I also really like the fact that I can see what everyone seems to be using within their profiles, from simply a post.

Lots of great information to go through!

[Hose_Head]

Requis, since you are in Ontario, you should carefully read this thread:

viewtopic.php?f=1&t=95962&st=0&sk=t&sd= ... tario#wrap

You are about to enter the Ontario OHIP world of insurance. The good news is that OHIP will pay for most of your equipment. The bad news is that it will be very difficult - even impossible - for you to get the top-of-line equipment that you want.

Your DME that sells you the equipment is going to try to give you the cheapest bottom of the line equipment they can. My advice is to know what equipment you want and be specific about the make and model number. Work hard to get the DME to provide it to you. Enlist your Doctor's help in this regard (for example she can specify a fully data compliant xpap on the Rx - don't confuse fully data capable machine with a compliance data only machine) FYI, the top of line Resmed and Philips-Respironics models seem to be preferred brands by most on this board.

Know what OHIP-ADP allows and pays for. (see the thread, above)

Chose your DME carefully and be sure to pick one that will help you find a mask that works for you. Your mask is the most important part of this therapy, and the hardest part to get working right.

Be sure to get a written Rx for your equipment from your Doctor (you won't get it unless you ask). You'll need this to buy supplies, etc, in future.

Try not to be confused about the discussions, etc about US insurance. Ontario's ADP and your supplemental insurance if you have any are different. Same goes for other USA specific things that come up from time to time (for example, the air-travel rules about CPAP not counting as a carry-on).


In the end, you'll likely want to have a backup machine and maybe for travel. If you are able and willing to pay for it, consider using whatever you get through ADP for this purpose (maybe a Resmed Elite model?). Then buy (out of your own pocket) a better quality apap as a daily-driver from wherever you can get it for a good price (CPAP.com is a good choice but cannot ship Resmed or Philips-Respironics equipment to you in Canada. There are mail-order alternatives in Canada).

Good luck, and let us know how you make out!