Why do we abandon ship?

kaiasgram wrote: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!

49er wrote:

Lazer,

I have alot of respect for you but to be honest, I really fail to see this humor when people's health is at stake. Sorry, maybe doing volunteer work at the Sleep Apnea Association and processing applications from people who can't afford machines has greatly brought this all home. And if they need a bipap machine, they will be waiting a long time for it.

We all have different opinions as to what insurance will work the best in the US. But it seems there are some people who don't give a damm that people's lives are at stake from lack of insurance and just care about their bleeping rights and want to bandy about the evil "S" word.

By the way, I don't mean to sound like I am bragging because I volunteered. What I have done is negligible compared to what many people do in the volunteer arena.

But I couldn't let this go by after that experience. Anyway, let's get back to our regularly scheduled programming.

49er

Addercatter wrote:Todzo-
What qualifies you to determine if someone else's therapy is working or not, especially when you've never even MET that person. Also, unless you have graduated medical school and are working in a part of Respiratory Therapy which specializes in the treatment of all types of sleep apnea, I believe that you just enjoy "playing doctor" on the Internet.

Kat

49er wrote:

Todzo wrote:

lazer wrote:Ok, my bad. I won't do an AVI and [delete] my post. I don't believe in that kind of censorship so I'll stand to be the ass on this one and let everyone see.

/Carry on with serious topic.

Hi lazer and all,

Probably I am pulling "a lazer" and going off topic and "responding to my first instinct" rather than being able to process all the inputs from such things as relevance, emotional impact to others, all of that. OSA is known to cause problems with executive functioning - part of which is the "ability to suppress the first response (reaction)". I also think I have noticed that my ability to take into account the emotional impact of what I am doing has on others is specifically affected. I think we loose the ability to be emotionally aware. You see that a lot on these forums. A very nice guy goes all horses behind in a heartbeat.

In lazer's case I know he works very hard to be healthy. I know he loves to have a good time and love him for that.

I also know he uses a breathing volume unaware PAP which automatically raises his pressure on signs I have found to be indicative of over breathing. That would make the CO2 maintenance issues worse. With CO2 out of his system his brain is starved of blood and oxygen[1]. I think that is part of his current – and strangely now chosen “horses behind” status.

So now I appeal to you lazer. Please obtain a breathing volume aware PAP or at least pursue eucapnic breathing retraining and manage your PAP use being aware of breathing volumes and stability using your nightly data. You, me, and all others will be happier and healthier for that.

I highly appreciate you lazer!

Todzo

1. http://www.ncbi.nlm.nih.gov/pubmed/19211719

Todzo,

Totally agree with everything you said and as one who has taken threads off topic, I probably was the last person who should have said back to regularly scheduled programming.

49er

ems wrote:

49er wrote:

Todzo wrote:

lazer wrote:Ok, my bad. I won't do an AVI and [delete] my post. I don't believe in that kind of censorship so I'll stand to be the ass on this one and let everyone see.

/Carry on with serious topic.

Hi lazer and all,

Probably I am pulling "a lazer" and going off topic and "responding to my first instinct" rather than being able to process all the inputs from such things as relevance, emotional impact to others, all of that. OSA is known to cause problems with executive functioning - part of which is the "ability to suppress the first response (reaction)". I also think I have noticed that my ability to take into account the emotional impact of what I am doing has on others is specifically affected. I think we loose the ability to be emotionally aware. You see that a lot on these forums. A very nice guy goes all horses behind in a heartbeat.

In lazer's case I know he works very hard to be healthy. I know he loves to have a good time and love him for that.

I also know he uses a breathing volume unaware PAP which automatically raises his pressure on signs I have found to be indicative of over breathing. That would make the CO2 maintenance issues worse. With CO2 out of his system his brain is starved of blood and oxygen[1]. I think that is part of his current – and strangely now chosen “horses behind” status.

So now I appeal to you lazer. Please obtain a breathing volume aware PAP or at least pursue eucapnic breathing retraining and manage your PAP use being aware of breathing volumes and stability using your nightly data. You, me, and all others will be happier and healthier for that.

I highly appreciate you lazer!

Todzo

1. http://www.ncbi.nlm.nih.gov/pubmed/19211719

Todzo,

Totally agree with everything you said and as one who has taken threads off topic, I probably was the last person who should have said back to regularly scheduled programming.

49er

49er... I seriously don't think you had anything to apologize for. This started as a serious thread about a serious problem. It wasn't necessary for Democrats or Republicans to jump in with stupid remarks. There was another thread here for that purpose.

It took me several months to be honest enough with myself to write what I did earlier in this thread. I was embarrased. I wanted to be one of those people who didn't give up. Seeing some of the remarks made here made me feel that I wasted my time saying what I did. Those remarks were very inappropriate and unhelpful, and I felt pissed at myself for even bothering to type what I did.

That said... Lazer, I know you are one of the good guys here, and I appreciate you.

Posey wrote:back to the topic...
I think I would have given up by now if I only had my doc & the RT @ Lincare. It seems to be a vast frontier that you travel alone if you are not fortunate enough to do a google and come up with a sleep apnea forum. Some of my more techie friends don't even check their data because "the RT told them not to". One of then recently had a MI and I asked her if her sleep apnea pressure needed to change. She has used the same pressure for 13 yrs and won't even check it.

Thanks to all of you who post questions and all who have the answers. I read a little and then ponder how it might apply to me.
So the answer to why we abandon ship (I think )is that there isn't enough support for CPAP & other PAP users. Docs don't know or don't care & most RTs working @ DMEs may be less than adeqaute for sleep disorders. I personally think the Rt I deal with is bipolar.

My husband works in a cardiac cath lab & I know my cardiologist well. I had a lot of symptoms that might be linked to sleep apnea but he never once asked if I snored or had any trouble with sleeping. I never made the connection either, until DH told me I snored, snorted and gasped at night. That's when I started my quest for help. Thanks to all of you.

Todzo wrote:

Addercatter wrote:Todzo-
What qualifies you to determine if someone else's therapy is working or not, especially when you've never even MET that person. Also, unless you have graduated medical school and are working in a part of Respiratory Therapy which specializes in the treatment of all types of sleep apnea, I believe that you just enjoy "playing doctor" on the Internet.

Kat

Hi Kat

What I do enjoy is being able to smell the flowers around me all summer long rather than reaching for the allergy meds, seeing my weight finally come off after years of continued effort apparently helped by better CPAP management and eucapnic breathing retraining, seeing my AHI and indicators of unstable breathing low. Simply better health.

The medical community has failed when it comes to getting PAP to work for people. Why on earth are you acting as if they we should look to them for leadership?! When will they admit their failure and get down to looking at the real issues rather than trying to oppress their patients!

Of course I made no determinations, I simply posited a guess based upon my own experience and those of others that I have seen expressed in these forums and through the research as mentioned.

If you really want to help people here – more power to you.

If you are here to oppress people – may you be like chaff before the wind

Todzo

Addercatter wrote:Why have you not entered any of your equipment or other treatment methods?

Addercatter wrote:
You are stereotyping.

Kat

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

Cindy Lou Who wrote:Todzo.
A sister-in-law went through 3 labs without being titrated. They sent her home with a bipap. No experience. No support! After a 3 month struggle she gave up, and gave it back to the DME. Swears she would rather die in her sleep than wear the thing.
If people don't have the positive attitude, perseverance, courage, and support And willingness to do what it takes to make this work. They may fail. Sometimes they have all of the above but don't have support. It feels like they are the only one going through this OSA thing. They may give up.

I have to admit that I am one of those that didn't have big issues with being a hosehead for life. Being a rotating factory shift worker had already trained this body to sleep under some trying conditions. Yes, there was the initial trial and error in finding the right headgear. But the second one was the charm...
My father was a great teaching example. In the mid 80's I heard him struggling to breath while sleeping. The 3rd heart attack killed him after 5 days of his lungs filling with fluid because his heart was so damaged.

I keep coming back to this form because I learned sooooo darn much here.... and still do To the point of embarrassing my Neurologist /Sleep Dr Specialist.... because I knew more about my machine than he did. And that convinced him to buy one for himself.
People here are very helpful. And that's felt and appreciated deeply. They've also walked that mile in your shoes and know what it can be like. Where your Dr and RT most likely has never been there and are clueless. That comes across to many people whether they are consciously aware of that... or not.
The key word for me is support... And I get that 100% from people here.
Bless you all!
Cindy