Why do we abandon ship?

Todzo · Post by **Todzo** » Wed Dec 05, 2012 3:06 am

I recently found out (well – accepted is probably more what happened here – the facts were there I simply did not want to see them) that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

I have my own ideas about why this is but I would like to know what others think.

I have also noticed that there seems to be a crisis in PAP use at the 1 month 3 month 6 month and 1 year marks – so – I wonder what you remember (or are experiencing) at about those times.

I would also love to know why you quit or how you overcame the crisis.

Thanks!

Todzo

49er · Post by **49er** » Wed Dec 05, 2012 3:34 am

Todzo wrote:I recently found out (well – accepted is probably more what happened here – the facts were there I simply did not want to see them) that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

I have my own ideas about why this is but I would like to know what others think.

I have also noticed that there seems to be a crisis in PAP use at the 1 month 3 month 6 month and 1 year marks – so – I wonder what you remember (or are experiencing) at about those times.

I would also love to know why you quit or how you overcame the crisis.

Thanks!

Todzo

Hi Todzo,

That is pretty sad although I am not surprised in the least.

My own story in a nutshell - I was diagnosed nearly a year ago and to be blunt, my use of PAP therapy has been an utter failure in spite of my best efforts. The most I have been able to sleep on the machine at a time has been 4 hours and that has happened twice

If I exercise extensively, I get two hours. Otherwise, it is mostly 1.5 hour blocks.

I would love to put the bleeping machine in the closet but due to suspecting I have severe apnea (hst said moderate but I think that is a flaw in the scoring system), I have no choice but to keep trying as frustrated and exhausted as I am by the whole process.

My next step is to investigate whether nasal congestion is interfering since Krakow and Park have said it is the number one barrier. So I started taking Nasonex which an ENT gave as a sample a year ago.

Due to it previously causing insomnia, I take it in the morning. But because I am getting a rebound effect after 4 hours, I think i will risk taking it before bedtime tonight and see what happens.

If this doesn't work, then I intend to see an ENT. I just hope the person doesn't suggest I need surgery since I don't have health insurance. But one step at a time.

These failure rates exist because as we all know, the support from sleep doctors is horrible and in fact is a disgrace.

49er

PS- Sinus rinsing simply makes the problem worse due to what I feel is a blockage in one nostril.

Xney · Post by **Xney** » Wed Dec 05, 2012 3:41 am

Just my opinion, but I think it's equal parts:

a) people have a crappy attitude about their medical issues, don't understand it, and aren't willing to work with treating it as it requires

b) most DMEs are horrible at getting new users set up right, with the proper gear and the right fits

c) it's a very challenging therapy in terms of getting it right, most people require a LOT of adjustments and tweaks to be successful

Denial Dave · Post by **Denial Dave** » Wed Dec 05, 2012 5:11 am

+1 on everything Xeny said

Just about everything I know about CPAP treatment, leaks, mask fit, cleaning, etc.... I learned from this forum!

Chikorita · Post by **Chikorita** » Wed Dec 05, 2012 6:14 am

Yep. I agree. I learned everything from here too. I have absolutely no idea how people do it by just seeing their Doctor.

I'm at the four month mark. I'd love to quit. It's expensive and frustrating and some of the side effects are annoying.

But I know what will happen if I give up. And my husband and kids know too and they don't want me to die an early death. So I soldier on.

Sheriff Buford · Post by **Sheriff Buford** » Wed Dec 05, 2012 6:20 am

Here's my two cents: you are probably asking the wrong crowd. What I have found out is that most of the old timers in this forum have been fairly successful in cpap therapy and stick around here to help others on their journey. Newbies come here to get educated and try to make it work. Once it starts to work, they stick around for a while to offer some help, but eventually drop off. There are folks that tried to get this therapy to work will put up various degrees of a fight, then eventually give up. I admire 49er and Pugs (and anyone else here) that actually struggle as much as they do, keep trying AND stick around to help others. They offer others something that I can't give. I struggled (probably not as much as others, but there were a few nights that if I had a hammer close by... well... ), but this forum was a blessing to me and I wish to give back. The point I'm making is that I believe the folks you are referring to eventually gave up on treatment and have moved on. Good thread.

Sheriff

ChicagoGranny · Post by **ChicagoGranny** » Wed Dec 05, 2012 6:26 am

that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

Re: Why do we abandon ship?

Why does a third of the population continue smoking, eat a high carb/high sugar diet, sit on the sofa watching TV and fiddling with electronics, never go outside, blah, blah, blah ...

49er · Post by **49er** » Wed Dec 05, 2012 6:36 am

Sheriff Buford wrote:Here's my two cents: you are probably asking the wrong crowd. What I have found out is that most of the old timers in this forum have been fairly successful in cpap therapy and stick around here to help others on their journey. Newbies come here to get educated and try to make it work. Once it starts to work, they stick around for a while to offer some help, but eventually drop off. There are folks that tried to get this therapy to work will put up various degrees of a fight, then eventually give up. I admire 49er and Pugs (and anyone else here) that actually struggle as much as they do, keep trying AND stick around to help others. They offer others something that I can't give. I struggled (probably not as much as others, but there were a few nights that if I had a hammer close by... well... ), but this forum was a blessing to me and I wish to give back. The point I'm making is that I believe the folks you are referring to eventually gave up on treatment and have moved on. Good thread.

Sheriff

Thanks Sheriff, I greatly appreciate your kind words. One reason why I so desperately want to succeed is so I can be that person to encourage others in a similar situation. I think about that constantly.

I greatly appreciate what you and Pugsy and others do to help people. There are so many of you that I better not name more names out of fear I will forget someone.

Anyway, I can almost find anything I need in the archives of this forum thanks to the members. I am very grateful.

49er

Centralia · Post by **Centralia** » Wed Dec 05, 2012 7:51 am

The problems must outweigh the benefits.

I have an eighty year old friend who has been loaned a Respironics for her obstructive apnoea ("the worst the doctor had ever seen"). While she was trialling various brands before they gave her this one, she trialled the ResMed, which was perfect for her. But then they kept trialling her on others, and parked this one on her. She protested to them - why did you let me try it and then not let me have it? But no, under whatever the system was, she could not have it - maybe it was too expensive. She gets it free, from the main city hospital, so from that point of view it's beneficial for her. But to know there is one that would be better . . . Every night come three o clock she tears it off, she can't do with it any longer. I think she is too aware of the dangers to her if she does without, so persists, and as I understand it, from what I read here, it is round about that time a person needs it the most.

nanwilson · Post by **nanwilson** » Wed Dec 05, 2012 8:31 am

I am a widow so had no one to tell me if things were going right or going wrong at nighttime...plus I was given a straight cpap brick and not a word of help from the DME. I stumbled upon this wonderful forum while doing my research on apnea and have been here ever since. If it wasn't for the kind folks here I would be a quitter too. I have two neighbours that are in denial, one of which I lent one of my machines to see if he had osa....and yes he does... the other I offered but said I can't stand that thing so don't bother.... both are still in denial.
The folks here have been my salvation, I would have never done it without them......so, I MUST pass it on so to speak. If I can help one person get over a tiny hurdle, then I have done my job for the day I sincerely think that those that come here and refuse to listen and just want to vent, will never accept the fact that this is life saving therapy and whey will not be the ones to accept and get the benefit. There are those that think they know it all and believe that this machine is just a bother or a sales gimmick...they will also be gone in a few months.
We don't love this therapy, but we have learned that we have to tollerate it to get any benefit...and we do end up getting a benefit , Its not easy to get this thing right, but if we stick to it and keep on trying the end result will be worth the trials and tribulations.
A huge big THANK YOU to my friends here on the forum, I for one would have never made it without you!!!!!!!!
Cheers
Nan

Sheriff Buford · Post by **Sheriff Buford** » Wed Dec 05, 2012 10:12 am

nanwilson wrote:We don't love this therapy, but we have learned that we have to tollerate it to get any benefit...and we do end up getting a benefit , Its not easy to get this thing right, but if we stick to it and keep on trying the end result will be worth the trials and tribulations.
Cheers
Nan

I'll agree that I don't love the therapy, but I do love the benefit.... and besides... when the wife sees me in my mask, she feels sorry for me and I get to milk it for all its worth!!

Sheriff

Mama Pinky · Post by **Mama Pinky** » Wed Dec 05, 2012 10:25 am

I don't know the answer to the question but as a newbie CPAP user since Nov 6th I would have abandoned ship already if not for the extremely helpful information I found here on these boards. Unfortunately for me, I didn't start my research until after I got my CPAP machine (which isn't data capable). I started with the Swift FX for Her mask (and using chin strap and tape on mouth) but had too many leaks because of mouth breathing. DME switched me to the Mirage Liberty on Nov 27th and I'm still struggling to get adjusted to that mask and get some quality sleep. I come to these forums almost every day looking for guidance and tips to make my journey successful. I did have 3 successful days in a row using the Swift FX (where I slept solid for almost 7 hours) and woke up feeling refreshed and clear-minded. Haven't had that feeling in years nor have I had a similar experience with the Mirage Liberty but I'll keep looking for tips and keep trying. The biggest tip I read on here so far that has helped me with my mask issues is to try to avoid over-tightening (which I had been doing).

I'm practicing "guarded optimism" that I'll one day have success with my CPAP therapy and cross over to being able to give back to this community. I'm trying to be optimistic, patient, open-minded and flexible. In the interim, I'm forever grateful to those of you who post here and offer support and advice. Thanks so much!

KathyB

xenablue · Post by **xenablue** » Wed Dec 05, 2012 10:29 am

Once I found out that I'd need to sleep with my XPAP every night, I sucked it up, decided a positive attitude would be the single most important factor to keep me on track. Running a close second is perseverence, then patience.

If you don't have a positive attitude, then that means you are going to talk yourself into quitting for the most minor reason/s, instead of putting on your big girl panties and dealing with it.

Oh, yeah... that's my answer to why we (not I) abandon ship - seeing only the negatives of XPAP and wallowing in self-pity instead of looking at the improvement in health (even if you don't FEEL that way all the time or right away). POSITIVE ATTITUDE!!!!

Some of our success is getting the right information - don't blame your doctor, DME etc... another way to empower negativity. YOUR health is YOUR responsibilty - if your medical team isn't helping, then find out who CAN help. In my case (and I'm sure everyone here), I'd be totally lost if not for the amazing people here, who, despite their own issues, still help anyone who asks for it.

Btw - after just over 2 years on XPAP, I have mostly 'OK' nights, some GREAT nights and occasionally HORRENDOUS nights where I fight with the mask all night. So I haven't just fallen into a 100% success with this - I still don't feel like bouncing out of bed in the morning, am still tired at times during the day etc. etc. however I REFUSE to give it up.

Cheers,
xena

MidnightOwl · Post by **MidnightOwl** » Wed Dec 05, 2012 10:47 am

Todzo wrote:I recently found out (well – accepted is probably more what happened here – the facts were there I simply did not want to see them) that only twenty percent of those commended to PAP are using those machines for more than four hours a night at one year.

I

How old are these statistics and how did they get them? Does anybody know offhand? It would be funny if we've been repeating endlessly statistics based on five people 20 years ago. I know nobody official has any clue what my usage was after the first 3 months. And the only "official" context I've seen those numbers in is from professionals arguing they should get to charge more money for more follow up services.

Goofproof · Post by **Goofproof** » Wed Dec 05, 2012 11:52 am

xenablue wrote:Once I found out that I'd need to sleep with my XPAP every night, I sucked it up, decided a positive attitude would be the single most important factor to keep me on track. Running a close second is perseverence, then patience.

If you don't have a positive attitude, then that means you are going to talk yourself into quitting for the most minor reason/s, instead of putting on your big girl panties and dealing with it.

Oh, yeah... that's my answer to why we (not I) abandon ship - seeing only the negatives of XPAP and wallowing in self-pity instead of looking at the improvement in health (even if you don't FEEL that way all the time or right away). POSITIVE ATTITUDE!!!!

Some of our success is getting the right information - don't blame your doctor, DME etc... another way to empower negativity. YOUR health is YOUR responsibilty - if your medical team isn't helping, then find out who CAN help. In my case (and I'm sure everyone here), I'd be totally lost if not for the amazing people here, who, despite their own issues, still help anyone who asks for it.

Btw - after just over 2 years on XPAP, I have mostly 'OK' nights, some GREAT nights and occasionally HORRENDOUS nights where I fight with the mask all night. So I haven't just fallen into a 100% success with this - I still don't feel like bouncing out of bed in the morning, am still tired at times during the day etc. etc. however I REFUSE to give it up.

Cheers,
xena

Very well put, Grasshopper! Everything I would say in one post. First you need to get right is your head, the rest will follow. I found about sleep apnea after it almost killed me, not making it work wasn't a option, make it work or finish dying. I chose from day one to make it work, and it does. Life gives US challenges every day, we have to move forward and make the best of it. It would be nice if everything were roses, but in reality it isn't, it's a struggle.

The reasons many fail in life, is lack of resolve. We want to not have to be bothered with taking care of our own needs, but in the end it's our job. Jim