Abandon Ship!!!

SleepyToo2 · Post by **SleepyToo2** » Wed Dec 05, 2012 7:16 pm

At the end of the day (or night), each individual must take the time and make the effort to find their own solution. You cannot rely on the words of any single user on this forum, or even those of the famous Dr Michael Berthon Jones at the ResSmed company. No one else can possibly know exactly what problems you are experiencing. I have read many things on this forum over the last 3 years - some have helped, some not. There is a learning curve that many people are able to climb quickly, others struggle from the get-go. And still others climb the first stage quickly, then can't get beyond base camp. So, can we all recognize the cries for help, focus on possible ways of helping those people, and refrain from getting into slanging matches? Life's too short. Or maybe we just need to adjust the humidity, pressure, EPR or angle of the hose, because it sure sounds like some people are not getting optimal therapy!

DoriC · Post by **DoriC** » Wed Dec 05, 2012 7:17 pm

Jencat, watch your blood pressure, he isn't worth your effort. Just hope he puts you on his Foe list. You'll be in good company with all us "girls"! Avi, you're a cranky old fool and should be ashamed of all your negative posts. Most of us are on to you and ignore your nonsense and I hope the newbies will catch on too.

chunkyfrog · Post by **chunkyfrog** » Wed Dec 05, 2012 7:25 pm

Avi: How much does Re$med pay you for your unending fountain of blather?
--Just wondering.

MrStein · Post by **MrStein** » Wed Dec 05, 2012 8:31 pm

chunkyfrog wrote:Avi: How much does Re$med pay you for your unending fountain of blather?
--Just wondering.

HAHAHAHA!!!!! Frog you rock!....."fountain of blather" LOL!

xenablue · Post by **xenablue** » Wed Dec 05, 2012 9:07 pm

MrStein wrote:
chunkyfrog wrote:Avi: How much does Re$med pay you for your unending fountain of blather?
--Just wondering.
HAHAHAHA!!!!! Frog you rock!....."fountain of blather" LOL!

Ditto - fountain of blather - so apt - LOVE IT!!!

xena

Todzo · Post by **Todzo** » Wed Dec 05, 2012 9:10 pm

avi123 wrote:
jencat824 wrote:
avi123 wrote:It took me 2.5 years to tame the beast called CPAP. Contact Dr Michael Berthon Jones at the ResSmed company in Australia, to help you, instead of asking for advice from laymen like us.
I take offense at your statement. I have been helped by the caring individuals who post on this forum. Many have gone out of their way to help me learn to interpret my data, hell, how to even get my data! Without all these good folks, I would not have found a problem I am having, goodness knows my dr would not have thought to tell me, since I have probably had this long term.

You have some nerve to post such a negative statement to a fellow forum member. He is reaching out to us for help, and you are telling him to call a company that is going to use marketing techniques on him, not help him to find his way with tools from any of the many companies available to us. Do you think ResMed is going to have him get a F&P product? No, they want to sell their product.

Post again when you have something positive to contribute. I thought this forum was about HELPING!
Jen
Reply,

The fact that you don't know who is Dr Michael Berthon Jones at Resmed shows how poor is your knowledge in sleep disorders. BTW, I usually put bullies like you on my foe list. So please don't be surprised.

Hi avi123!

You might cut Jen a break. Many of us have experianced how the opressive attitiudes and current ignorance of our current medical establishment can downright put us in danger.

Just a thought,

Todzo

Guest · Post by **Guest** » Wed Dec 05, 2012 9:21 pm

4ZA

Sheriff Buford wrote:I don't know if you will believe me or not, but there is a mask out there for you that will be comfortable and doesn't leak. Some people stumble on it from the "git-go" and for some people, it's a journey. Once you've "had it" with a mask that will never stop leaking, you need to get another one. You can exchange masks within 30 days for free and you'll know within those 30 days if the mask will work for you or not. Don't give up. It's a journey.

Sheriff

As far as I am aware there is no system in Australia where you can buy a mask then exchange it even once for a different one let alone exchange it multiple times,You buy a mask and are then if you find it isnt suitable you have to buy another one.

Code: Select all

archangle · Post by **archangle** » Thu Dec 06, 2012 12:11 am

pherretaus wrote:I am almost at the point of abandonding the good ship "CPAP" for the last month I have applied myself to finding a happy tolerable solution to machine settings and mask adjustments all to no avail. I am convinced that there is no solution and if I continue I will always live in this world of air leaks and settings that work one day but not the next - our recent weather spell with 40C has not helped. Surely someone can make a mask that is comfortable and does not "fart" all night. I also suffer emyphsema and asthma and purchased my machine with "A" flex that should have taken care of the pressure build up that I could not tolerate. At this moment in time I look like going down with the good ship "CPAP" as I do not have the energy to abandon ship.

How did you end up with a full face mask? They're hard to fit, prone to leak, and may make your apnea worse because they can push your jaw back. They should never be the first choice of mask unless you have problems with nose breathing, or mouth leaks. Some people do have to use them, though. Unfortunately, a lot of lazy DMEs tend to dispense them so they don't have to worry about mouth leaks.

avi123 · Post by **avi123** » Thu Dec 06, 2012 12:43 am

[quote="BlackSpinnerReply,

Well I had lots of help from the DME who sat on the other side of the table and told me to hold up my mask and then informed me that it was impossible for the mask to leak because it fit me. From the other side of the desk.
If there is anyone on this site who is a bully it is you with your mostly arrogant and ignorant statements and truly stupid advice. There is much more information on this site then what most DMEs, sleep doctors and RTs provide. I doubt very much if some doctor who runs Resmed is going to concern themselves with someone having a hard time with leaks, he will simply refer them to their local DME or sleep doctor.[/quote]

Comment,

Beautiful Medusa, so what if the OP gets a recommendation from "some doctor who runs Resmed" in Australia, to a local sleep doctor there? Is your advice better then from that Australian Sleep Doc?

chunkyfrog · Post by **chunkyfrog** » Thu Dec 06, 2012 8:43 am

Unless the OP is in the market for new equipment, the MANUFACTURER is going to be more interested in the bottom line
--regardless of any credentials suggesting otherwise.

teachcsg · Post by **teachcsg** » Thu Dec 06, 2012 10:02 am

I agree with the others here-don't give up yet! I have worked with patients that have told me it took them years before they were able to et used to wearing the cpap and now they love it and cant sleep without it. As someone else mentioned try different therapies- dental appliances and provent come to mind. There is also a mild surgical procedure known as the Pillar procedure that helps make the soft palate a little more stiff. Its considered an out-patient procedure so don't let the word surgery scare you. Hang in there and don't jump overboard just yet!

BlackSpinner · Post by **BlackSpinner** » Thu Dec 06, 2012 12:28 pm

Guest wrote: As far as I am aware there is no system in Australia where you can buy a mask then exchange it even once for a different one let alone exchange it multiple times,You buy a mask and are then if you find it isnt suitable you have to buy another one.
Code: Select all

The manufacturer is the one who provides the cash for the 30 day return on masks included Resmed.

Hawthorne · Post by **Hawthorne** » Thu Dec 06, 2012 1:09 pm

Don't give up, OP! There is a mask out there that will work for you. It may take awhile but you will find one. Nasal Pillows are the most comfortable. I use them now and have trained myself to keep my mouth closed. I've had OSA for 11 years now.

avi123 - when I come to this forum, I very often see "advice" from you for problems people are having with cpap use! To me, your advice is, at best, questionable. There are lots of people here who can give good help to the OP and anyone else and they don't know this doctor you speak of.

Go ahead. Put me on your "Foes" list. I could care less.

Uncle_Bob · Post by **Uncle_Bob** » Thu Dec 06, 2012 1:24 pm

avi123 wrote:It took me 2.5 years to tame the beast called CPAP. Contact Dr Michael Berthon Jones at the ResSmed company in Australia, to help you, instead of asking for advice from laymen like us.

I wouldn't exactly class anyone who has walked the walk and talked the talk as a laymen.

Resmed has decided to feature real patients as knowledge resources on their new support website, wake up to sleep

Personally i think its best to seek advice from all sources and take on board what makes sense to you.

pherretaus · Post by **pherretaus** » Fri Dec 07, 2012 6:50 am

Thanks to all for advice and for your consideration, it does mean a lot. I visited my heart specialist today ( in view of a recent spell in hospital from Atrial Fibulation) this was due to my PTSD however he encouraged me to continue CPAP as the printout and checkup was good. Am about to head off for Gold Coast in a week for four weeks in our caravan. Looking forward to endeavouring to right the good ship CPAP and set it on a positive course. Maybe the sea air etc will assist me. Thanks again and a Merry Xmas to all and a Happy New Year.

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