Random Thoughts of a Disordered Mind

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Life Beyond CPAP

My CPAP rubber parts have been soaking in white vinegar/distilled water for a final cleaning before I pack the whole thing up to put away in the back of my closet.  The machine itself cost over $1,300 so I’m taking very good care of it, just in case I need it again at some point.

But for now, and hopefully forever, my sleep apnea is gone.  I had a home sleep study that showed my apneas have gone from 38/hr to 1.3/hr – and normal is under 5/hr.  I only snored for 3 minutes the whole night.  I was happy dancing to hear the word that I’m normal and no longer need the machine to help me breathe at night.

Much as I didn’t like being tethered to my ResMed CPAP, not using it has been an adjustment, one I didn’t really expect.  For one thing, it’s awfully quiet in the room.  Roomates told me at conferences that the machine didn’t make that much noise, but as the masked person with the elephant hose, let me tell you that there is a persistent wooooshing sound in my ear as the air moved.  It was actually comforting and after getting used to it, the sound helped me sleep.  I think I’ll get a “white noise” sound machine to do the same thing for me now.

My special CPAP-friendly pillow is in storage and I’m adjusting to being able to move my head without the mask shifting out of position or the hose wrapping around my neck and strangling me.  Well, not really, but sometimes it felt like that.   Now, though, after several months of restless sleep and fatigue, I wake up feeling rested and having had deep, vivid dreams – which means I’m getting REM sleep.

One of the things I had heard before my surgery was that bariatric surgery patients – both bypass and lapband – often found that medical conditions often disappeared on their own.  Things like diabetes, high blood pressure, and sleep apnea.  So I had suspected that my sleep problems, which began acting up 2 months after the surgery, were related to getting a lapband.

Losing weight can also help the apnea go away or at least be more minimal in intensity.  But I’ve been almost this low before one year after I got my CPAP, and all that happened is that my air pressure were adjusted slightly.  This time, it’s quite different.  I’m more than ready for it.


Random Sunday Things

Apartment update — throwing around “my brother the lawyer” was very helpful in working with management.  They are implementing his advice, at least most of it, and have said they are commited to doing the repairs to my satisfaction.  Which is a big improvement over what they said on Wed.  Friday they chopped out the wet wall and baseboards and patched in new, covering a much bigger area than I expected, and Monday I’ll get paint.

I don’t know what’s happening with the carpet but they ripped out enough carpet pad that I know SOMETHING is happening.  Whether that ends up being both whole rooms or just pieced sections, I don’t know.  I’ll probably have to move the poor kitty to the study again on Monday so she doesn’t get in the middle of the noise and activity and freak out.  For now she’s curled up on her little footstool next to mama, making us both happy.

Friday I had an appointment with the sleep doctor, the first since I moved last summer.  Although I’ve been on CPAP for over 3.5 years, I’ve been having problems in the last year waking up in the night and not waking up as refreshed as I did when I first got the CPAP.  Since I am an expert diagnostician with a medical degree from Google, I was pretty sure that my air pressure needed to be adjusted up higher.  I’ve gained back so much weight since the pressures were set that it was a good bet, and the doctor concurred.

What was annoying was the conversation about my weight problem.  Did I know that it would be helpful for me to lose weight and that lowering my BMI would have an effect on my required air pressure, not to mention improve my health?  Noooooooo, no one has ever mentioned it.  Would I be interested in information about weight loss program in a neighboring town that only costs $1200 for personalized plan?  No, I wouldn’t.

It makes me so mad that they tell me this every time I see a doctor, even when I volunteer up front that I know I have a weight problem and that it’s not helping.  See?  I’m Self Aware and have listened to people tell me in the past that I am a failure and need to work on this and then everything will be fine.

I grumbled loudly about it to the sleep tech who did a mask fitting after I saw the doctor.  She’s doing WW herself and we commiserated about it.  But then she did say that the doctors have to tell us if there is a weight-related factor to any physical problem, because otherwise they are open to liability for NOT having said anything.  So I should expect to keep hearing it.  In a funny way, that did help.  It’s not pointed at me for being stupid and a failure, it’s just doing their job.  I can listen and get upset, listen and get motivated, or listen and ignore the stress levels.

We also talked about WLS and the effect on sleep apnea.  Her experience with patients is that there’s a big improvement quickly, not just from the weight loss, although that’s certainly a major factor.    I may not get to a place where the apnea is completely gone but it could get low enough that the CPAP isn’t really needed.  It would be great to not be tied to the hoses and masks every night.


Sleepy in Connecticut

Way too much yawning going on today. I wake up groggy and lethargic which are symptoms of not enough sleep – which in my case can be because I think my CPAP machine needs to be adjusted, or because I stayed up way too late watching the run of Lord of the Rings on TNT. Or both.

First the CPAP. It works by regulating room air, not oxygen, through a tube attached to a mask strapped onto a person’s face. Masks can cover nose and mouth both if the person is a mouth-breather, have little nasal “pillows” that insert into the nose but leave the rest of the face pretty normal, or something that fits over the nose and has a brace across the forehead. That’s the most common kind and it looks weird. But it works when it’s fitting correctly.

People with sleep apnea stop breathing many times a night and their bodies wake them up as they gasp for air. But they don’t usually know that’s what they’re doing, they just know that they wake up tired and aware that they’ve been awake during the night, but nowhere near the amount they actually ARE awake. I have 38 apneas an hour, or did at my first sleep study, so no wonder I don’t sleep well without my machine.

But people change with time, with weight loss, with medication changes, and the pressure that worked before may be too much or not enough now. This is my current problem. I’ve gained back about 45 lbs since I was last tested and I don’t think I’m getting enough oxygen. So in its infinite wisdom, my health plan is having me tested with an overnight oxymetry thing here at home – which is cheaper than a sleep study, I guess, but depending on the results, they may need to do one of those anyway.

The home health providers are coming on Wed. to deliver the equipment and show me how to use it. I’ll clip that little boxy device into my finger when I go to bed and hopefully it won’t fall off during the night while I’m sleeping. It will measure the oxygen levels in my blood by some kind of magic means and if it’s below a certain amount, I’ll get another study which will result in a different pressure. Which will in turn result in better sleep. That’s the plan.

Of course, if I would stop thinking I have to watch the LOTR movies every time they are on, it would also help. I kept trying to make it to the place where Frodo drops the One Ring into the lake of fire in the depths of Mordo. But I could only prop my eyes open to the end of the battle at Minas Tirith. I’ve seen these movies at least 10-12 times, all the way through, and read the books more times than I can count. But I still want to watch it all.

No wonder I was tired. Good thing for this Wed. test that there’s not much on that I would want to watch.

image from the Yahoo CPAPUsers group website


I Need a New Sleep Study

King Tut in a CPAP maskSleeping isn’t what it used to be and I’m afraid that I need to have a sleep study redone to see if my CPAP machine needs to be adjusted. I’ve had two sleep studies, both while living in Boston, but repeating the experience isn’t high on my happiness list.

The rules of thumb for having a new sleep study are:

  • return of symptoms (snoring, apneas, daytime sleepiness, lack of energy, etc.)
  • gain of 30 lbs or more
  • loss of 30 lbs or more

Unfortunately I can report that I’ve definitely gained more than 30 lbs since my last study and those symptoms are definitely back. Well, I don’t know that I’m snoring since I sleep with my mask and CPAP machine every night – and there’s no one here to hear me except the kitty and she’s not talking. And I can’t count my apneas because that’s not something you can tell yourself. My machine does have a little computer and collects that information so I’ve requested a computer smart card that will read it and report the results back to the doctor.

I do know that I’m having a lot of trouble waking up in the morning and my energy level is low. I’ve also noticed that I wake up quite a lot at night even with the CPAP, which didn’t used to happen. When I first got the machine and was able to wear the mask all night without ripping it off (which took some time), I woke up every day ready to hit the road and had energy to burn.

The test doesn’t hurt but it’s awkward and disruptive. The sleep technicians spend an hour hooking you up with dozens of wires and leads stuck all over from your scalp, face, chest, back, and legs. Then they tell you to “sleep normally” which is not easy to do when you tangle yourself up in wires when you move.

My last study was skewed because the sleep center forgot to tell me to stop using my CPAP and taking my sleeping meds for 7-10 days before the study. I can get by for a day or two without the CPAP, though my sleep is splintered. But more days and without my meds — I can’t imagine how I’m going to do this. Because I didn’t the last time, though, the results weren’t quite accurate, although the test wasn’t redone.

I have a physical scheduled in 10 days and will tell my doctor then that I think a new study is needed. Yale has a Center for Sleep Medicine with three different sleep clinics but it can sometimes take time to get scheduled for a study even after they decide you need one. It will be even longer if I have to meet with a sleep doctor first. I’m getting sick of the doctors and I haven’t even seen one yet!

Image featured on the CPAPUsers Yahoo Group page.  If you have sleep apnea, I definitely recommend joining for support and ideas.

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What to Tell the Doctor

Child’s drawing of a doctorTomorrow is my first appointment with my new doctor here in my new home. I picked my brain and came up with a 4 page set of lists of things that I thought someone would probably either ask me or want to know, such as who my Boston doctors were, allergies, ongoing medical issues, current medications, surgeries, etc. Tho that might be all. My brain doesn’t retain this information for very long and I can’t spell medical words without spell check to fix the mistakes, so it was easier to just write it up in advance.

The purpose of the visit is really to sort out my CPAP situation. You may remember from my Day in Insurance Hell that although I need the machine to help me live with sleep apnea, who actually is paying for the one I’m breathing with now is up for grabs. I need to get this sorted out and quickly.

But this is the first time I’ve seen the doctor. And I don’t know what else she’s likely to ask or want to know. It’s going to be quite obvious that I am obese and I have a sneaky suspicion that she will bring it up – because in my experience, all doctors bring it up. It’s as though they don’t know that I already know this about myself.

Weight is the elephant in the room. The doctor knows that I need to lose weight and I know that I need to lose weight. Who will say something first? Waiting for her to bring it up will make me anxious – already is, actually – and is likely to raise my blood pressure. Or I could take charge of it and raise it myself first, which would give me a chance to say, “I have had a life-long weight problem and although I have more to lose, I have maintained a 70 lbs weight loss for 5 years.”

The trick is being able to do it simply to impart information, not to get defensive or combative. The conversation will happen sometime – it always does – so I think maybe I need to practice. I might need it tomorrow.