UPDATE on my Check at Sleep Docs today

[Kahfree]

So, I went to the doctor today for two things. My Echo-Cardiogram and my recheck with the Sleep Doctor.

First the Sleep Doctor: I asked her for a copy of the printout from the machine, and I got that. I also asked for a new mask...and got the Swift FX for her and a chin strap.

Apparently my numbers are good...and she said for a new person, I have done well. She said to stop trying to be a perfectionist. Am I? Maybe so...I want it done right and done right quickly I suppose. She said it takes time and I asked he a question. "Would you ever consider sending a patient who was newly diagnosed with diabetes out the door with a needle and a bottle of insulin and tell them, good luck, I hope it works for you?" She said "NO never, they have classes to learn how and a support group." I said. Then why do they send people with OSA out the door with a machine and tell them good luck, see ya in 4 weeks and hope they are compliant? I told her if it were not for this site, I would have given up.

Anyway, I got my prescription and the letter for the Electric company for reduced rates. I also got her to tell the DME that I need the software for my machine so I can track the progress and he said OK...then he told me in front of her to call tomorrow and ask for Randy and they will let me buy a copy. Is that all I needed to do, have her tell him to let me have it? It seems too easy, so I am worried they are gonna play games with me.

Echo-Cardiogram: The test was ok, and interesting to see my heart. The woman who performed the exam said "Your heart looks great, but you did NOT hear that from me!" and then she smiled. So, I assume, though I should not, that my heart is good and the edema in my legs are not from my heart. So, what it is from is anyone's guess. Here is my printout from the ICON Premo machine today. What do you think? I know they are light, but hope you can read it.

[robysue]

Apparently my numbers are good...and she said for a new person, I have done well. She said to stop trying to be a perfectionist. Am I? Maybe so...I want it done right and done right quickly I suppose. She said it takes time and I asked he a question. "Would you ever consider sending a patient who was newly diagnosed with diabetes out the door with a needle and a bottle of insulin and tell them, good luck, I hope it works for you?" She said "NO never, they have classes to learn how and a support group." I said. Then why do they send people with OSA out the door with a machine and tell them good luck, see ya in 4 weeks and hope they are compliant? I told her if it were not for this site, I would have given up.

Ain't this the truth though? Why is it that OSA patients are treated all to often like figuring out a CPAP and learning to sleep with a hose on you nose is easy and straightforward? And that there are no "real" problems with adjusting to therapy since pumping air down our throats can't possibly cause side effects? [After all, it's just air isn't it?]

I too wish that there had been some real patient education available somewhere in the Buffalo metro area when I was first diagnosed. Classes for OSA and CPAP use? Sounds like a great idea to me. And I would have LOVED a support group available. Instead of literally being told by the sleep doctor (even before my titration study) that I'd have "no real problems adjusting to CPAP" and that I would "feel better in a couple of weeks" when I tried to raise my concerns about the high non-compliance rate, my own tendencies towards insomnia, and my concerns about just how big of an adjustment this thing would be in my life and in my bedroom.

The proverbial "they" say that there are at least 12 million Americans with moderate to severe OSA. And there maybe another 12 million Americans with mild OSA for a total of up to 25 million Americans with OSA. Most of whom are undiagnosed. (See http://www.apnexmedical.com/subindex.as ... 749514AD13 for example). And that means that OSA is as common as Type II diabetes.

So why is there such a huge discrepancy between how Type II diabetes patients are treated---educated about their condition and what they can and should be doing to monitor their blood sugar levels, education about how to properly manage their disease and use their blood sugar data to determine whether their treatment(s) are effective, plenty of patient support groups, etc.---and how we sufferers of OSA are treated?

[HoseCrusher]

Kahfree, Congratulations on having a healthy heart. Isn't it wonderful to see it at work?

If you like, I would be happy to send you a gold star... Getting things right has nothing to do with being a perfectionist. I vote for keeping up the effort at getting things right.

Your data shows that you aren't using your machine enough (and you already know that), that your machine scored AHI is dropping, and you are having some leak issues some of the time. This doesn't sound like it is too far out of the "normal" for people just starting on xPAP therapy.

[Kahfree]

Kahfree, Congratulations on having a healthy heart. Isn't it wonderful to see it at work?

If you like, I would be happy to send you a gold star... Getting things right has nothing to do with being a perfectionist. I vote for keeping up the effort at getting things right.

Your data shows that you aren't using your machine enough (and you already know that), that your machine scored AHI is dropping, and you are having some leak issues some of the time. This doesn't sound like it is too far out of the "normal" for people just starting on xPAP therapy.

Well, last night on my new Swift FX for her mask and the chin strap, I slept for 6 hours straight and never woke up! At least not that I remember. Although I do recall semi waking, like moving and all, but not enough to take the mask off. That is by far the longest I have slept. I am excited. I hope this continues.

And you can send the gold star to me.

[monarch22]

Kahfree, You are doing a great job adjusting! Even though you need to increase the hours used each night, I saw that for # of days device not used was a big, fat zero. So, good job for putting that mask on every night!!

It sounds like you had a good night with the Swift FX and I hope that continues to help you! I couldn't agree with you more about the example of a diabetic and insulin. I tried to use that with my doctor when I wanted to change my prescription from straight cpap to auto so I could get the results, but he wasn't buying it. So I switched it myself so I could at least get the basic information, but still no software yet.

Keep us the good work!!

[Kahfree]

Kahfree, You are doing a great job adjusting! Even though you need to increase the hours used each night, I saw that for # of days device not used was a big, fat zero. So, good job for putting that mask on every night!!

It sounds like you had a good night with the Swift FX and I hope that continues to help you! I couldn't agree with you more about the example of a diabetic and insulin. I tried to use that with my doctor when I wanted to change my prescription from straight cpap to auto so I could get the results, but he wasn't buying it. So I switched it myself so I could at least get the basic information, but still no software yet.

Keep us the good work!!

Thank you. I know that I did not achieve perfect numbers and all, but if you notice in the first two weeks I had high AHI numbers and then they started to taper down. Also, have of the days (14 of 28) were 4 hours or greater, and I feel this too is an accomplishment. I don't understand the leak ratio yet so the numbers are not good or bad to me till someone helps me understand what they mean, and where they need to be. As for the software, I did not call them yet, but believe I should do so here soon so its fresh in the DME providers mind from yesterday. I am hope that talking to them without the doctor present does not make them feel powerful and deny me the software that they stated yesterday that I could buy. I will call after lunch.

[Muse-Inc]

...edema in my legs...

Common in women, they call it idiopathic edema. When I was way skinny, I used to get it during hot weather but I didn't drink much wate then either so it might have been a combination of factors. Now, they blame it on my considerable excess weight.

BTW, great analogy to your doc re "patient" (hate that label) education re diabetes and CPAP therapy!

[sleepio]

My congratulations to you! This gives me hope that one day, I too will sleep more than 3 hours! Now you have already started to inspire others who may well have given up. Well played.

[Kahfree]

Common in women, they call it idiopathic edema.

I did read a little on that, but will read more. If it is so common, why would my doctor not think of that? Or, maybe he has but decided that it is in my best interest to rule out any heart disease first. Now that I think more of it, I suppose he was right to do that.

My congratulations to you! This gives me hope that one day, I too will sleep more than 3 hours! Now you have already started to inspire others who may well have given up. Well played.

Thank you Sleepio. I hope I can be of encouragement to others. I have been encouraged by so many people on here with advise and good thoughts. The CPAP community of people are so helpful to everyone. I am honest in saying if I had not found this site, I would have given up by now. No one in my house uses a CPAP and I although two of my brothers do, they live 3000 miles away. My kids are great support, but since they did not understand what I was feeling, I made them try on the mask and I turned it on. LOL.