Friend In Need

[Sleepless on LI]

One of our friends on this site who we haven't seen around too much lately has been keeping in touch with me. I am worried that he is giving up. He waited awhile to get his equipment and now that he has it, he is not happy. He was using a ff mask and not having much luck, so I sent him my Activa which doesn't work for him, either. He notices a slight difference in how he feels, but is not having an easy go of it.

Perhaps we can all kick it into high gear, give it the old CPAPTALK.COM try and convince him that he will do better in the future if he sticks with this, works out the kinks and finds the right mask as opposed to putting his health in jeopardy by giving up? I thought I could handle the job alone, but he is proving to be one tough cookie.

I don't want to compromise anything that has been said to me in confidence, but I feel I'm failing him if he quits. I don't want that to happen and I am out of ideas to help him. Maybe if you guys can help point out the reasons for staying on the therapy, even if he answers as a "Guest" so no one knows it's him, the right things might be said that will get his compliance to go a lot easier. I am just about out of suggestions and this is not a one-woman job. So I ask you, HELP????

[CollegeGirl]

How about this:

You're going to let a 26-year-old girl who's still in school be stronger/more determined than you?! C'mon! I'm assuming you haven't been on CPAP as long as I have (since March), though I could be wrong. Why am I sticking it out? Because:

1) I don't remember the last time I felt rested. I want to know what it feels like.
2) I want my memory back!
3) I want my fogless thinking back. I'm tired of "blonde moments."
4) I want to be able to go to class, read a book, watch a movie, etc. and not fall asleep.
5) I don't want to fail school because of what I mentioned in #4.
6) I feel like I'm sleeping through LIFE because I'm sleeping so much. I want to get to where I don't HAVE to sleep 20 hours straight on weekends.
7) I don't want to lose any future jobs because I fall asleep at them, or am always late becuase I'm so tired (I've come close more than once).
8) I don't want the numerous medical problems untreated sleep apnea creates.
9) I want to LIVE!

I know it's hard. If you've seen my postings, you KNOW it's been hard for me. But there are SO many reasons not to give up. Please don't.

-CG

[Ron]

I'll try to help. Tell your friend that others have waited for years after their sleep study and diagnosis of OSA before going on CPAP, so his hesitation is natural. Tell your friend that the time in the beginning is the worst and that things will get better. I've struggled (as it appears that all of us have) with uninformed doctors, uncaring DME's and incorrect/ill-fitting equipment. Particulary in the first year of use when I was a "newbie" and took the experts advice at face value on all things OSA. Your friend has already taken a jump ahead in his learning curve just by finding this site and having you and other to talk to and learn from.

I'm not sure what masks your friend has tried, but tell him that this is usually the most difficult and challenging issue that we all face. I've tried a large number of masks, and am still looking for "my" magic mask that is comfortable, fits well, doesn't leak, and can be tolerated night after night w/o discomfort. The Aura is the closest thing to "perfect" that I have found for me to date. To get to this point has cost me many sleepless and painful nights while experimenting with a great variety of masks. Tell you friend to keep trying and trying until he can find one that will work well for him. It will be worth it.

I guess what I am trying to say is that your friend should hang in there. To go without treatment is most likely not an option. It is not easy for any of us, but with some help and guidance, he can and will find a solution that he can tolerate.

Not sure if this helps, but tell your friend that he is not alone. There are others out there who want to help.

[yardbird]

I was diagnosed 5 years ago. The mask they sent me home with was terrible. I gave up. I got tired of being tired and tried again. This time with a cpap-pro device. I understand they aren't real popular with some folks, but it worked and got me using my machine again. Last winter I quit again because I was so dried out my nose was bleeding. Instead of fixing the equipment, I quit. I developed PVCs over the spring and into summer. Ended up having cardio tests all the way to an angiogram. WEll... they don't know what causes PVCs but they tell ya they're "non-life-threatening". Doesn't matter. They feel like crap. Started CPAP again when I noticed wife was tired. She sleeps with her hand on my chest so she can shake me when I stop breathing (about 80 times a night). So I started CPAP again. Lo and behold the PVCs diminished and are now very infrequent. My wife looks more rested. Winter approaching again. I was getting all dried out again. This time I decided to take control and get things right. New equipment on its way.

I really thing the HARDEST part about being on CPAP is the mask. If you get that part working, the rest is cake. Unfortunately it costs money to try them unless you have a DME furnishing them to you or friends to trade around with.. If you're working with a doctor, don't be afraid to pester them until you find a mask that works for you. There are so many variations. I feel better now than I have in YEARS and I have to give credit to the CPAP and wonder why I was so damned stubborn.

Don't give up on this. Don't give up on yourSELF.

[Sleepless on LI]

CG, Ron & Yardbird,

THANKS! Come to find out, when I wrote to my friend and asked him to look at this thread, he informed me I am wrong, he is not giving up. So as I told him, at least this thread may get him some good suggestions to make things easier.

One thing for sure, he knows he is NOT alone and that we all shared this reaction and frustration in the beginning to some extent, some of us longer/shorter than others but we've all gone through it.

Thank you for coming to another papper's aid. Good people you all are.

[snork1]

Just a guess on my part, but I assume since he has a full face mask, he is a "natural mouth breather", i.e. his nose is messed up. I also figure that if you have been helping this person, they have tried all the usual basic tricks.

I would say its time to see a GOOD ENT....you know all the caveats I say are required to win the "good" rating.

If your nose doesn't work, CPAP doesn't work, of that I am convinced. I am more bullheaded and persistent than many people, so I struggled through a year of ineffective and frustrating CPAP before getting my nose and sinuses fixed and finally being able to really effectivley START CPAP.

Now I figure I am still fighting sleep at my desk and in meetings because its a really boring job most of the time. Once i am away from work, I feel GREAT. It was worth a bit of surgery to get CPAP working.

[SLPYHED]

Can he use a nasal device such as a Swift? If so I would be willing to send him mine.

Snork makes a good point about nasal problems which negates any use of a nasal device.

Oh I have an Ultra Mirage I could send him also.

Kirk

[jcobb607]

Lori

PM sent.

Jay

[Sleepless on LI]

You guys are breaking my heart with kindness. Jay, you are an angel. And, Kirk, hop in the same boat with Jay...incredibly generous. So between us all, we will have him on every mask until he finds the right one. Yes, he is on a full face mask. I forget which one.

Snork, great suggestion. He IS going to see his doctor soon, thank goodness, and hopefully they will come up with a solution to make him feel better. I just thank goodness I was wrong and he's not giving up.

Thanks to all of you for continuing to prove me right. I always knew this site was loaded with people who just keep on giving and giving and you've proven it once again. What a group!!!

[tlc95066]

I just recently turned 42 and I can honestly say that I haven't felt this good in many years. I beleive that I have had sleep apnea to one degree or another most of my life. As long as I can remember I have had trouble staying awake in meetings, thinking clearly, boughts with depression etc.

When i was first diagnosed I began my search for information on OSA. Boy what a rude awakening I had, I saw all these really ugly masks and I was immediatly overwhelmed. My immediate thought was "no way am I going to wear that thing on my face!". I was more concerned about how I looked than my health.

So here I am today... 7 months into my new life with my APAP and I am still trying to get used to my new bed partner. It took me about 4-5 months on my machine to finally start feeling better. I am currently on mask number 6. Fortunately I didn't have to purchase all of them, some were loaners from the clinic. I don't have a perfect solution for a mask yet, but I will keep trying until I find a better solution than my Flexifit that I use today.

So the question is how do I feel today and why I haven't given up:

1. I can hold an intelligent conversation with my clients and not have my mind wander.
2. I really like NOT having headaches every day!
3. On our trip to Italy this last summer I was able to go non stop for 12 days on excursion after excursion and have a great time. We had a grueling travel schedule and I could NEVER have kept up without my APAP.
4. I hated living in the brain fog...
5. I can keep up with my 15 year old daughter and her friends!

I am sure that I can think of several more, but what I am really trying to say is please don't give up. I know how hard it is, I have been in tears over this stupid OSA. In my opinion life is so much better on APAP than without. I like having the energy to live my life. None us knows how long we will be on this earth. I choose to live each day like I won't have another. I can't do that without my APAP.

Please keep trying!
Teri

[rock and roll]

Generocity is one thing, facing the facts is another. The important thing to consider is the potential of what will happen long term if the cpap is given up on. The health ramifications are enormous. You don't state how long this person has been on cpap, but for many of us, it takes time to reverse our sleep debt and we don't feel a difference for some time. But even then, we are still feeding our body the air we need to function at night. This is not a quick fix nbor a cure but it is a treatment and the best we have at this time.

[Sleepless on LI]

R&R,

Like I said, he is NOT giving up, like I had thought. He is just not getting the help I think he thought he was hoping to get by now and is having some trouble equipment wise, etc. It's nothing most of us haven't been through ourselves, but some get things smoothed out quicker. He has only been on therapy for a bit over a month, I believe. But, I'm happy to say, he is NOT giving up. Thanks for the input.

Teri,

So true, all that you've said. It does feel nice to be able to keep up with your teenagers, no? Hard to believe it can happen. I have an aunt who is going for a sleep study and when I explained a bit about OSA and the treatment, her first reaction is, "I'm not going to wear something like that for the rest of my life..." which of course got me going into my rap all about how you can't afford not to, etc. Need I say more? And the one thing I stressed to her is, that's how I felt at first until I realized after being on treatment how I felt like I was in my 20's again and how it is totally life altering for the better, and in ways you never dreamed could be possible at this stage in your life.

Thanks all for the input.

[yardbird]

LoRi

I've gotten more help and information HERE in the last... what.... week or so... than I have in the last FIVE YEARS since I was diagnosed. So I'm not surprised to hear someone say they don't feel like they're receiving the care and/or attention they need in order to make this work. My "sleep doc"... my pulmonologist... nice man, BUT...I'd go to my appointment like every 3 months like a good little ignorant apnea patient and he'd ask the same questions and I'd give the same answers and nothing changed. I'm a manager type. Always have been. And I know that if you keep doing things the same way... the result won't change. So I stopped going to see him. It was less like health care and more like STEALTH CARE because I never saw it. I felt more like part of someone's billing cycle than I did their care. And when I found out he was getting kickbacks from the DME... well that was the final straw. AND... the DME who promised all kinds of follow up calls to make sure things were ok and all that... it was BS. They NEVER called. The only communication I got from them was an invoice for $20 a month COPAY on top of the $85 a month they were getting from the insurance company. I finally told them to stick it where the sun don't shine and either drop the co-pay or come get the machine. Co-pay stopped. Imagine that.

Anyways. I know we have to be a little careful here as I'M not a doc and most of the others aren't docs, but if we continue to speak and have factual data to back us up when "stating fact" and if we continue to support each other by sharing our EXPERIENCE.... well I can't tell y'all how much this has helped me. I wish I'd found this place 5 years ago. I'd be about 5 years ahead of where I am now. It's truly a pleasure to be here with all of you.

[Sleepless on LI]

Yardbird,

At the risk of redundancy, I will repeat that if it wasn't for this place, I would still be lost in the sauce, so to speak. When I was diagnosed with OSA, I knew absolutely nothing other than "apnea" means cessation of breath (looked that up when I was diagnosed) and that it was not good. I found this site by accident when I was trying to see what they were going to be giving me equipment wise and noticed the site had a talk section. The rest is history. I have truly learned 99.9% of everything I know today about this condition and treatment from the incredibly knowledgable and generous people on this site. Right, they are not doctors, but they can teach you more correct information and provide things that most doctors won't. The encouragement and support, the information, the feedback, well, you don't get that in a doctor's office. As far as I'm concerned, this place was my saving grace, my god send, my lifeline. Sounds corny unless you live through it, too. Then you know just how true it really is.

Glad you found the site, too. It can make the difference between wandering around without a clue, just doing what uncaring doctors will suggest you do, and really being able to learn and become pro-active in your own care and treatment, actually have control over your situation. That is how I like to be in every aspect of my life and this site made it possible when it came to having OSA. Couldn't have survived as well as I did without it.

[Severeena]

My then boyfriend and now husband was on a CPAP before I was.

I wanted to give up, but I finally found a full face mask that works on high pressure and that is the Hans Rudolph Full Face mask. You have to go with the precise measurement on the caliper to get the correct fitting mask.

If I can fall for a guy on a CPAP machine and he can fall for a gal that was put on a APAP machine then I know you will find someone who is as caring and loving.

I can tell you how we handle the intimacy part, which is really great.

We cuddle before we put on the masks for about 10 to 15 minutes. If we have spontaneous feelings in the middle of the night and all is mutual, off go the machines and then the masks. We hold each other, kiss, say good night tell each other we love each other on go the masks and then the machines and back to sleep.

Love is very possible. Never give up.