Am I "cured"? My auto servo bipap thinks so..

[lovey]

Hi peoples, it's been a long time since I wrote. I am doing much better, living with my mom in California. I have had trouble getting good treatment for my sleep apnea with Kaiser Permanente here. They test and prescribe without ever talking to me. In March, I was prescribed an auto servo ventilation bipap after they discovered I had central apneas too (duh, I told them that for the prior three months). I accidentally "killed" my old bipap, and then in February, they prescribed a new bipap, only to prescribe the auto servo ventilation one be prescribed 6 weeks later. So now I have two new machines (at no cost to me).

Anyways, I have had trouble adjusting to the autosv, always waking up short of breath, and multiple times. This past week, I had the card read at Apria, and my AHI was 1.5! Since my initial AHI four years ago was 82, this doesn't seem right!! My one thought is that it is not reading my apneas correctly because of my Lap-band (weight loss surgery). Or I have a defective machine. Or I have had a miraculous spontaneous recovery from severe sleep apnea in recent months. Weight loss is probably not the cause of the low apneas, as I have only lost 20 lbs. in the last 6 months (but 175 lbs. overall!), and I had a bad night of sleep apnea at the sleep study six months ago.

I am just checking if anyone else has had this problem, especially if they have a lap-band. Kaiser Permanente is handling it so bad... I have to go to San Jose which is 5 hours away for the sleep specialist specializing in mixed sleep apnea. Not like I ever have met him though...I just am prescribed and tested. Nobody talks to me. And after 5 months without oxygen (all my Michigan docs didn't even want me going a week on the train ride to California without oxygen), I still am no closer to getting supplemental oxygen with Kaiser. Ugggh. I even promised to go to Oxygen anonymous, if they would give me my fix of oxygen. I wonder the long term consequences of their inefficiency. Other departments, i.e. bariatric surgery have been great (although they are in South San Francisco..I have to travel 2 1/2 hours for them!!!).

So if anybody has any experiences to share about auto sv's and problems, please let me know!

[Julie]

You may have had what seems like a 'miraculous' recovery. Bariatric surgery cures OSA! Ask your new MD about it when you see him. Now that is the ONLY known way to get rid of apnea, weight loss alone doesn't really do it (or so rarely that it would be hard to find many people there), and Cpap/Apap/Bipap/Vpap don't do it, but that surgery does! However, of course you must get yourself checked no matter what, as you still apparently have some problems.

[bdp522]

If you got that 1.5 while using the machine, I'd say the machine is doing its job. That does not mean you are cured.

Brenda

[Julie]

Actually, it may very well mean that - do some research on recent developments about bariatric surgery and OSA (and diabetes, and gallbladder disease).

[Slinky]

But also keep in mind anatomical features such as large tongue, long uvula, receding jaw, short, thick neck, etc. The ONLY sure cure for apnea regardless of weight or anatomical features is a tracheotomy.

[unadog]

What you are describing is 100% normal. That is ** exactly** what you should see if the machine is doing it's job.

That is what I see every night since starting ASV. Nothing has changed for me. I still have sleep apnea, and my breathing patterns are the same if I sleep without the machine.

I don't know about the timing of surgeries, weight loss, studies, etc. But what you describe is exactly what would be expected if you still had sleep apnea at exactly the same levels that is well managed by the machine, so there is no basis to assume anything else.

In some cases central apneas get better or go away after a couple of months on CPAP in cases of Complex SA. Witb other causes of CA that is not true. The ASV is probsbly going to give you the best treatment for your condition no matter what. So you should be thankful you have it. You might need to twqkvsome settings,btuy it is probably the cause of your great numbers!

[GumbyCT]

If you got that 1.5 while using the machine, I'd say the machine is doing its job. That does not mean you are cured.

Brenda

Exactly....assuming your leak rate is within normal limits for your mask. It is doing exactly what you want it to do.

[JohnBFisher]

Greetings Lovey, I concur with the posters. You are NOT cured. But your ASV unit is doing its job. It helps regulate your breathing. By helping maintain your normal breathing pattern it helps avoid normal problems with central apnea and/or periodic breathing.

You are not "cured". But it definitely is helping you control your breathing.

And it normally takes quite some time to adjust to how the ASV unit works. I've been using mine for about six months and I still have arguments with it some days. But it is much better than not using it.

So, I recommend you stay with the ASV unit. The weight gain will help decrease your need for a higher pressure. But if you have either central apneas or periodic breathing, you will probably always need an ASV unit. The good news for you is that between the Lap Band surgery and the ASV unit, you should be in much better shape. So hang in there. I know it can be tough to get used to the unit. But the rewards are definitely worth it.

[lovey]

Thanks everyone for your replies. The University of Michigan said that I would always have sleep apnea, no matter what my weight was, because I have a large tongue in comparison to my airway. It still doesn't make sense though, that I have improved this much over these six months. I had rapid weight loss over a year ago, and my sleep apnea actually got worse, puzzling my doctors. I hit a plateau six months ago, and stayed there for the last six months, only losing 20 lbs. these past six months. At my plateau weight in November last year, I had a sleep study in Michigan that still showed severe sleep apnea--and that I had rapid desaturations even with my bipap on, making me eligible for supplemental oxygen.

One difference though in the last six months is my boobs "deflated". Think cantelopes morphed suddenly into cucumbers. It's not pretty! Maybe this change is responsible for the improvement in sleep apnea too? Thanks, Lovey

P.S. the Apria report showed everything else was okay, i.e. very low leak rate, etc.

[Goofproof]

You are "Cured", in the sense that all of us who use our XPAP equiptment correctly, and have positive results from doing so, are "Cured" The problem comes from thinking that you no longer need treatment, because you are doing well. Treatment is the "Cure" for most of us. Other things can be worked on to make us better or make it easier to do XPAP. The true "Cure" for most of us, would be a trach or death, I prefer XPAP treatment as my option. jim

[rubymom]

I'm confused by your use of the word "cured". Treated successfully, yes. Cured? No more than any of the rest of us here who had high AHI during our sleep studies now much reduced WHEN (and only when) we use our machines appropriately. Have you ever slept without it? A quick doze off without my mask on reminds me immediately everytime that I am NOT cured.

Congrats on your weight loss.

[unadog]

At my plateau weight in November last year, I had a sleep study in Michigan that still showed severe sleep apnea--and that I had rapid desaturations even with my bipap on, making me eligible for supplemental oxygen.

You might want to buy a recording pulse oximeter to check your O2 levels now that you are on ASV.

If you still had a lot of events with the bipap during the study, it sounds like the ASV is giving you much better treatment! Hopefully that is also helping with the desats.

I understand you might prefer not to spend the money. If you can get the insurance to do an overnight study through the DME that would be great. But given the difficulty you are having getting the oxygen, it might be worth it to just buy the oximter and find out what is going on. Then you will know whether you need to keep pushing on getting he oxygen, or focus more on other areas.

Good luck!
Michael

[CollegeGirl]

With my cpap, I frequently have nights with a 0 AHI. Without my cpap, I stop breathing more than 100 times in an hour. Think of it like this: You were born without a leg. You get a prosthetic leg, and you can walk just fine! Must not need that prosthetic leg anymore because you can walk just fine, eh? It's the machine that's making your AHI what it is. Without the machine, your AHI is not going to be like that.

[lovey]

I do own an oximeter/apnea monitor, but it has been broken for a few months, but it is now fixed (replaced my finger probe). It should be interesting to see if I alarm with the oximeter. It's an old model, and does have the capability to record, but I haven't been able to get a printer that works with it. Last year, it took 8 months of paperwork hell to get it through Michigan Medicaid...14 prescriptions for it, and five letters of medical necessity! Kaiser won't even pay for the electrodes or finger probes. It pisses off my doctors, because I also have supra-venticular tachycardia (SVT), and it is the only treatment to prevent a full blown SVT attack. But the insurance companies/Medicaid/Kaiser Permanente care more about the liability of having an oximeter than what is medically best. My doctors fought for all those months because they hated that their prescriptions and documentation didn't matter, it was "policy" over their medical judgment that prevented me from getting the oximeter.

That makes sense, that the autosv is controlling my breathing to such a low AHI, and without I would have a high AHI. I feel terrible when I don't use my machines. I have always been compliant over the the last four years--I have had so much trouble adjusting to the autosv though, I get frustrated and take it off. Then I feel really bad in the morning.

Maybe too, that over the last six months, I finally had the benefit of the weight loss sink in, when I stabilized my weight for awhile. It has been such a struggle with my sleep apnea over the last few years, that it's so difficult for me to realize that I might have improved significantly! I wasn't supposed to survive, or at least I should have had a stroke or heart attack, according to the University of Michigan. To think that sleep apnea might not be my biggest concern, it's hard to sink into this brain. I am still about 90 lbs. overweight. My BMI has gone down from 58 to 37 in the last two years too! All my blood tests, i.e. vitamins, liver tests, cholesterol, etc. came back "perfect" in the last month. It is so weird to be doing so well!!!
Thanks everyone,
Lovey

[Guso]

Look this:

http://www.pulmonaryreviews.com/sep02/p ... Index.html