Why do we abandon ship?

BlackSpinner · Post by **BlackSpinner** » Wed Dec 05, 2012 12:21 pm

Part of the problem lies in the fact that today, people expect instant results. They see it with antibiotics, one week and you are cured instead of dead like great- grandma would have been. Most people do not see an instant result because they have been given the wrong masks and the wrong information and no support what so ever.

Todzo · Post by **Todzo** » Wed Dec 05, 2012 12:35 pm

MidnightOwl wrote:
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.

reported by a medical research specialist about 4 months ago

chunkyfrog · Post by **chunkyfrog** » Wed Dec 05, 2012 12:36 pm

I agree with Blackspinner; too many expect overnight results.
This only works for the few who experience the miracle.
Everyone else has to deal with problems that do not resolve in a short time.
Doctors and RT's seem to expect the same results for everyone, and this is not the case.
Many here keep plugging away because they get feedback from the machine/software,
and community support (THANK YOU!)
Empirical data is needed when "how I feel" provides zero or inadequate motivation.
Nerds, geeks, and mask fashionistas have an advantage.

johnthomasmacdonald · Post by **johnthomasmacdonald** » Wed Dec 05, 2012 12:47 pm

I know why i'm committed to sticking to this and/or trying everything and anything. THe first i ever heard of sleep apnea was a good friend of the family in florida- ann marie - who was incredibly active in her 40s raising 4 kids with her husband when the first she knew of a problem was being unable to be awakened one morning and finding she had suffered severe brain damage - she then lived a couple of years on the cpap machine before dying.

Heavylids · Post by **Heavylids** » Wed Dec 05, 2012 1:01 pm

ChicagoGranny wrote:
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 ...

Because pepole are becoming unmotivated and lazy and ripe for socialism. People want everything to be done for them. So, if therapy involves more than walking into a Doctor's office for a shot or taking a pill, most people won't stick with it. I believe the stats. We all come to this forum and stay here because we are the 1% ers who want to live life to it's full potential and not die in our sleep from "complications resulting from untreated sleep apnea". I've seen that line in the newspapers so many times over the last year it makes me ill.

So, I have no ear for listening to the constant whining of those looking for justification to quit cpap....the mask hurts...the pillows hurt my nose...it's just to uncomfy and messes up my hair so I quit...I can't go on...I can't accept this. Yea, well go somewhere else with that noise.

lazer · Post by **lazer** » Wed Dec 05, 2012 1:27 pm

Heavylids wrote:
ChicagoGranny wrote:
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 ...

Because pepole are becoming unmotivated and lazy and ripe for socialism. People want everything to be done for them. So, if therapy involves more than walking into a Doctor's office for a shot or taking a pill, most people won't stick with it. I believe the stats. We all come to this forum and stay here because we are the 1% ers who want to live life to it's full potential and not die in our sleep from "complications resulting from untreated sleep apnea". I've seen that line in the newspapers so many times over the last year it makes me ill.

So, I have no ear for listening to the constant whining of those looking justification to quit cpap....the mask hurts...the pillows hurt my nose...it's just to uncomfy and messes up my hair so I quit...I can't go on...I can't accept this. Yea, well go somewhere else with that noise.

Good post!

squid13 · Post by **squid13** » Wed Dec 05, 2012 1:47 pm

I guess my reason is simple, I like living. I been 100% compliant since I started in July 2011 all night every night. I have two new great grandsons that were born this last year that I'm going to North Carolina this Christmas to see, and if that ain't reason enough to stay compliant I don't know what is. Any day above the grass is a Great Day and I intend to stay above the grass.

kaiasgram · Post by **kaiasgram** » Wed Dec 05, 2012 2:26 pm

People have "abandoned ship" with various medical treatments for all of history, and for a variety of reasons. I don't think this is a sociopolitical issue, or one that can be answered with generalizations about "people today..."

I think the reasons that people quit PAP therapy (or any therapy) are many and varied. A lot of folks have already touched on some of the main obstacles to sticking with xPAP. I had an interesting chat with a man at the gym that I've known casually for quite a few years. This is an educated man, a university professor before he retired. Here he is, religiously working out every day (he's there when I arrive at the gym and still there working out when I leave!), but recently he told me that he has sleep apnea and tried CPAP several years ago but quit early on because "I hated it." I tried to encourage him the other day to consider starting up again -- machines are better, quieter nowadays, etc., but he wasn't going to budge. "I figure as long as I wake up every morning I'm OK." He was polite and happy to let me keep talking, but there was no way he was going to reconsider. Type 2 diabetes notwithstanding.

I hate CPAP too, likely as much as my friend did, but I'm not quitting whereas he did. Here is where the OP's question gets really interesting to me -- why one person quits while another person stays committed when both people find the therapy difficult and uncomfortable. I can't make the blanket statement that my friend doesn't care about his health, or that he's lazy and doesn't want to have to put effort into taking care of himself -- in fact he's a contradiction because in some ways he does take care of himself and obviously has self-discipline about getting regular exercise (much more discipline with exercise than I have in fact), but there's one area of his health care that he has chosen to ignore, or at least to minimize its relevance in his mind. I would love to know more about his decision to quit but our conversation didn't get that far.

Todzo you asked a great question!

StuUnderPressure · Post by **StuUnderPressure** » Wed Dec 05, 2012 3:39 pm

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

Voted BEST ANSWER by me!

Attitude is exactly why I have been able to do this for 14 years.

Todzo · Post by **Todzo** » Wed Dec 05, 2012 3:53 pm

StuUnderPressure wrote:
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

Voted BEST ANSWER by me!

Attitude is exactly why I have been able to do this for 14 years.

what challenges did you encounter or are you dealing with now

jencat824 · Post by **jencat824** » Wed Dec 05, 2012 4:27 pm

BlackSpinner wrote:Part of the problem lies in the fact that today, people expect instant results. They see it with antibiotics, one week and you are cured instead of dead like great- grandma would have been. Most people do not see an instant result because they have been given the wrong masks and the wrong information and no support what so ever.

I agree with BlackSpinner - people want instant gratification. Look at fast food, fast take care clinics at drug stores, even instant foods from the grocery store (instant coffee, instant oatmeal, etc) - this says we live in a fast flying world that wants a quick fix. There is no 'quick fix' for OSA, it is hard work and those who succeed do so because they do the work, not their drs or dme's but the patient.

Each of us is here posting on this forum because we want to participate in our own health, as well as help others like us along the way. I didn't know this forum existed until recently, prior to found this wonderful forum, I compared masks among different websites, picked what I thought would work best & ordered it to try. That hit & miss method helped me find the mask I wore for approx 10 yrs. I was shopping for a new mask when I found this forum. I have learned so much more here than I could ever have hoped to learn from my dr or dme, and without the helpful caring forum members, I would not have discovered I have a problem my dr didn't even bother to tell me about. With the help of all of you I am working to correct that problem so I can get the most possible benefit from my therapy. Notice I said my, that is key, we each take ownership of our health and our bodies, that's why we are here. For those who failed at CPAP, they wanted 'fast food' medical care and CPAP does not work in 'fast food' mode.

Jen

Todzo · Post by **Todzo** » Wed Dec 05, 2012 4:31 pm

Centralia wrote: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.

Hi Centralia!

Regarding your friend I think her body tells her to remove the mask because at that time - as you put it - "The problems must outweigh the benefits".

Dr. Park recently commented that he has found that people prefer particular machines and I have seen many posts here telling how a change of machine caused the person a great deal of hurt.

Well the doctors seem to be slowly catching on and new technologies are being developed. Right now I am thinking about establishing a 501c3 to help such as your friend.

Have a great week!

Todzo

xenablue · Post by **xenablue** » Wed Dec 05, 2012 4:31 pm

Todzo, I presume you mean challenges with XPAP, not with life in general - those are constant and ongoing.

Challenges with XPAP are few -
I have several masks that I'm happy with and cycle them as my mood chooses.
I sleep most of the night without waking - usually a leak, or hose issues will wake me, but only briefly.
Recently my DH noticed I'm back to kicking and flailing some. A visit to my neurologist has me on a low dose of Requip. I'm training myself to wear my oximeter all night so I can download the info to send her so she can assess my O2 issues, if any. She thinks perhaps a change in pressure is needed, so I bought an APAP to experiment with and once I get the software sorted out, will have something to work with.
I also get leg cramps at night which, if I remember to drink a glass of tonic water before bed, will susbside.

I sincerely believe I had more sleep challenges before XPAP therapy.

One of the things that keeps me going, is in my sleep study, my AHI was 96 - since Day 1 of therapy, it's not been over 0.9. Whether I feel better or not - at least I know there's oxygen getting to my brain/body LOL.

Cheers,
xena

Todzo · Post by **Todzo** » Wed Dec 05, 2012 4:36 pm

xenablue wrote:Todzo, I presume you mean challenges with XPAP, not with life in general - those are constant and ongoing.

Challenges with XPAP are few -
I have several masks that I'm happy with and cycle them as my mood chooses.
I sleep most of the night without waking - usually a leak, or hose issues will wake me, but only briefly.
Recently my DH noticed I'm back to kicking and flailing some. A visit to my neurologist has me on a low dose of Requip. I'm training myself to wear my oximeter all night so I can download the info to send her so she can assess my O2 issues, if any. She thinks perhaps a change in pressure is needed, so I bought an APAP to experiment with and once I get the software sorted out, will have something to work with.
I also get leg cramps at night which, if I remember to drink a glass of tonic water before bed, will susbside.

I sincerely believe I had more sleep challenges before XPAP therapy.

One of the things that keeps me going, is in my sleep study, my AHI was 96 - since Day 1 of therapy, it's not been over 0.9. Whether I feel better or not - at least I know there's oxygen getting to my brain/body LOL.

Cheers,
xena

Hi xena!

The funny thing is that the oxygen in your oxygen saturated blood may not reach your brain.

Have a great week!

Todzo

BlackSpinner · Post by **BlackSpinner** » Wed Dec 05, 2012 4:37 pm

Heavylids wrote:
ChicagoGranny wrote:
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 ...

Because pepole are becoming unmotivated and lazy and ripe for socialism. People want everything to be done for them. So, if therapy involves more than walking into a Doctor's office for a shot or taking a pill, most people won't stick with it. I believe the stats. We all come to this forum and stay here because we are the 1% ers who want to live life to it's full potential and not die in our sleep from "complications resulting from untreated sleep apnea". I've seen that line in the newspapers so many times over the last year it makes me ill.

So, I have no ear for listening to the constant whining of those looking for justification to quit cpap....the mask hurts...the pillows hurt my nose...it's just to uncomfy and messes up my hair so I quit...I can't go on...I can't accept this. Yea, well go somewhere else with that noise.

Total bullshit. Nothing to do with socialism, Everything to do with the capitalistic greed. "Me me me NOW! Screw everyone else!"