Sunday, July 31, 2011

Cursed leg/foot cramps

I had a rather rough night last night.
Damned hips!!!!!!!!
Ended up sleeping most of the night on my back because neither hip would allow me to stay asleep for any length of time.  (My AHI this morning was up to 7.2, after being down to 2.6 and 2.1 on previous nights.)
I tell you, that surgery can't come soon enough for me. (Although I'm scared out of my wits to have the surgery, I'm anxious to be rid of the pain.)
And my leg/foot cramps have come back with a vengeance too.
Like I needed that.
Now, it's entirely possible that the cramping has more to do with the fact that I didn't have a massage on Thursday.  (How dare my therapist take a holiday!)
It's more than passing strange that I didn't have my weekly massage on Thursday and the cramping returned on Friday night.  Hmmmmmmm.  Wonder what the connection might be?
Obviously, I need those weekly treatments.  Good thing my therapist is back on the job this week!
None of these developments has stopped me from putting in my 15 minutes on the stationary bike ... yet.  It's becoming increasingly harder to get that time in, but I'm sticking to it.

Friday, July 29, 2011

Sorry for the long absence

OK, OK, stop yer nagging!
I am soooooooo sorry I haven't posted in the past five days but life has been getting ahead of me.
It seems that once my hip pain takes hold, it takes over.  Everything just takes so much longer to accomplish.
And when stuff takes longer to do, the days get shorter.  (Think about it.)
Anyway, I'll bring you up to snuff now.
Monday -- I have no idea, now, what I did on Monday.  It's too long ago for me to remember.  Sorry about that.  (Just kidding.  I spent the day doing genealogical research.)
Tuesday -- That too is a long time ago now, but I do know that I was busy getting ready for the next two days.  (I also spent a good deal of the day doing more genealogical research -- when the bug gets me, it gets me good.)
Wednesday -- I went into the big city for my physio appointment but before I had that therapy, I saw my ENT specialist.  I wanted his input about my apnea issues before my final visit with the sleep doctor the next day.  Turns out I have a "large tongue in a small throat" and would greatly benefit from the CPAP.  He did offer an explanation for my severe dry mouth though.  On examination, it seems that my salivary glands are a tad deficient.  He offered that it could be genetic, but it is also a function of aging (yup, another thing to which the aging population can look forward to enjoying), arthritis, and fibromyalgia.  As well, dry mouth is definitely a side effect of the drug Lyrica, which I take to treat my fibro.  And of course, the CPAP treatment just exacerbates dry mouth.  He recommended that I continue with my ever-present water bottle but add hard candies to my routine (yucko!) because it is important to stimulate the salivary glands as much as possible.
Following all my medical appointments, I went to my little chickadee's place to await their arrival home.  Pauple washed my car while we went to my hairdresser's so I could get beautiful again, and then we went for a fine dining experience at Wendy's Restaurant (MBB's choice).  We spent a quiet evening enjoying each other's company before everyone headed off to bed for the night.
Thursday --  We got an early start by going to our usual haunt (Denny's) for breakfast.  (I've been taking MBB there since he was an infant -- the staff have known him all his life and greet him by name as we walk in.)  After breakfast, I stopped in to visit my good friend, LC, for coffee and catch-up chat.  She has just returned from her annual trip to Mexico and I was anxious to hear how her family is doing.  Then I was off to take care of my CPAP business.
First, I had to go see rep guy for a print out of my report to take to my sleep doctor.
Then, I had to get to my sleep doctor for my scheduled appointment to discuss my progress after the one month trial on the machine.  Based on my report of feeling so much better in just two weeks (I don't consider the first two weeks as a valid test since they were disastrous until I switched to the APAP unit), the doctor had no problem prescribing continued treatment.  And fortunately, I met the criteria for the APAP vs the CPAP (not everyone does so I was lucky, she tells me).  She gave me the prescription, told me to ask her office clerk for the necessary paper work that I would need for my insurance company, and said that she didn't need to see me again, unless I was having trouble.  It was nice knowing her!
Then back to the rep guy to actually buy the machine.  Now that was an interesting exercise.  And the paperwork!  But I left an hour later with a bag full of goodies and a brand spanking new ResMed S9 Autoset.
By the time I got home at 3:30pm yesterday, I had had the biscuit!  But I didn't go to bed (or sleep) until about 9:00pm (OK, I nodded off during the ball game ...)
And now you're current.
Oh, today, Friday. 
Thus far today, I've read my morning newspapers.  I made John his big breakfast (that's usually a Saturday affair but I have plans tomorrow that preclude my making his breakfast so today was in lieu of).  I've folded the load of towels that I threw into the laundry last night, and I've done my 15 minutes on the stationary bike.  And I've written this blog.
Now I have to get down to business (telephone calls, bookkeeping, and updating calendars with appointments) so I can get back to doing the fun stuff (genealogical research).

Sunday, July 24, 2011

Seems the party's over

Yup.  The steroid shot seems to have run its course.
Six weeks and three days.
Woke up this morning, severe foot cramps.
Wow, haven't had those in quite some time.
Got up out of bed and thought, "hmmmm, something's not quite right this morning."
John commented that I wake up now appearing to be quite refreshed, very different since I'm on the APAP machine.
He wasn't very pleased to hear that while the machine is apparently doing its thing, the steroid has run out.
I actually kind of suspected it by yesterday when my left groin was giving me fits.
Couldn't get comfortable, no matter what I did.
And my SI joint was getting in on the act too.  A dead give-away!
Today, I can pretend no longer.
The party's over.  I'm back to that persistent, nagging tooth-ache-like pain in my groin with every movement.
All good things must come to an end.
But did it have to end so soon?
I wasn't finished enjoying my time in heaven.
I had plans.
Now, I have to come back to earth ... and wait.
That surgery call can't come soon enough for me.

Saturday, July 23, 2011

Feeling better yet?

This APAP therapy would seem to be working, I guess.
I'm certainly getting a lot more sleep than I ever have.  So "better rested" should start to kick in any time now.
Actually, truth be known, the "better rested" must already be registering with my brain because I'm only nodding off once during the day now -- usually about mid-day.  The first of several nod-offs used to start early morning while I was reading the newspaper.  That's progress, isn't it?
My AHI is just under five (4.5 - 4.9) each morning so I'm still having episodes but not as many as before I started the therapy.  (And the improvement isn't as dramatic as it was in the first week with this newer machine, when my average AHI was 3.9.)
Every morning, John asks me if I'm feeling any better yet.
I don't know how to answer that.
I'm stilll aware of the frequent awakenings.  The biggest difference is that I simply go back to sleep immediately -- the awakenings don't disturb me now by keeping me awake for any length of time.
And I NO LONGER GET UP TO GO PEE.  That is huge as far as I'm concerned.
So, I guess I should be responding that I am feeling "better."
But I'm still waiting for the day I awake and actually feel better.
You know, like a normal person. 
Like I want to get up and go.
Now, I might be expecting too much, being fibromyalgic and all.
Perhaps I have to put it all into perspective.
Do I feel better than I used to, before I started using the machine?
Do I feel as good as a person should in the morning?  Fully rested?  Ready to conquer a full day of activity?
Why not?
Because I'm fibromyalgic (with bad hips) and I might not EVER feel that good.
Plus, of course, we have this stupid heat wave that is impacting on us.  And if I compare my response to last summer's heat wave to this one -- yes, I feel MUCH better.  At least I'm coping much better with this round of high temperatures.  I'm not having the night time asthmatic episodes that I had last summer.  And those attacks were directly attributable to the heat wave.
So the machine is having a positive effect all around.
Yes, I guess I'm feeling better, all things considered, thank you very much.

Thursday, July 21, 2011

Six weeks ...

Today marks six weeks since that steroid shot, and it's still holding up, thank you very much.
I'm starting to see signs of it's waning, though.
Like, my leg is objecting to being extended (ie long strides).  Now, it had been objecting to very long strides all along but I've noticed that I'm being forced to take shorter and shorter strides all the time.  So I'm walking more slowly now than I was a week ago.
That kind of sucks.
But there is still no pain on impact.
My physiotherapist tells me that because the pain is evident on extension, that is another indication that the problem is in the joint itself.  Score another point for diagnostic proof of the need for hip replacement.
Obviously, I'm not going to enjoy the same twelve weeks of heaven as I had with last year's injection.
Oh well.
You can't have everything.
I'll take what I can get.
From the way things are progressing now, I will predict about another two weeks of bliss.  That would be eight weeks of relief, total.
Not bad, all things considered.
If I'm right, I should be in agony again just on time for my birthday.
Let's hope I'm wrong and I get at least nine weeks of relief, allowing me to enjoy a pain-free birthday celebration.
OK, OK, yes I like to dream big.

On another front, the CPAP/APAP rep guy was delighted with our meeting on Tuesday.
My average AHI for the week is down from 10 to 3.9 -- "mission accomplished," as he declared.
The new machine is working precisely as he had hoped it would.
I'm a lot more comfortable with the new machine too.  The heated hose has solved the issue of condensation in the mask, and the dry mouth is lessening each night.
Turns out that just over half of my apneas are central (as opposed to obstructive).  He tells me that there is nothing he can do about central apnea (coming from the brain).  The machine only addresses obstructive apnea.  I will have to discuss the CSA with the sleep specialist when I see her.
I'm wondering if we should be bringing my neurologist into this discussion.  Seems to me if I'm having central sleep apnea, that is a matter to be addressed by my neurologist.  Perhaps my seizure medication is not doing its job adequately?
The fact that I'm having central apneas kind of explains a lot for me, I think.  Like, my difficulty with anaesthetic perhaps.   And the problems I have with most sedatives.  I've always said that it's like I "forget to breathe" when I'm given stuff like that.  Sounds to me like that's exactly what's going on.  But it's called central sleep apnea and I can apparently have episodes during non-sedated sleep as well.  I'm surmising.
The sleep specialist will make the final decision next week as to whether or not I continue on this therapy.  That decision will be based on the report she receives from the respirologist combined with what I tell her about how I feel having used the machine for a month.
As far as I'm concerned, the first two weeks of the trial didn't count since they were a disaster.  I've really only had one week of trial so far.  And I will have had another week of trial by the time I see the sleep doctor.  She will have to rely on two weeks' trial for her assessment.
I'm already sold on my need to continue with breathing assistance.  I hope the sleep doctor agrees.

Sunday, July 17, 2011

My adventures with the CPAP/APAP

Things are going much better since I was switched to the APAP machine.  I think rep guy might be onto something.
The heated tube makes a tremendous differerence to my comfort level (and this unit IS actually much quieter than the other).
I love the fact that I can check each morning to see how I've progressed too.
For instance, the respirologist told me that I had been averaging 10 apnea events per hour and he wanted to get that number down to below five.
In the first five nights of using the new machine, my AHIs (apneas/hypopneas index) have been:  9.9; 3.4; 3.9; 9.0; and 3.7 respectively.  So, we would certainly appear to be on the right track.  I'm not sure why the bump back up to 9.0 on that fourth night, but let's assume an anomaly for now.  Time will tell.
It will be interesting to find out how long my breathing has been stopped during these apneas too, because I've had a couple of quite frightening experiences that I'm anxious to discuss both with the respirologist and the sleep specialist.
Last Thursday night (well, Friday morning) at about 1:30am, I woke in serious distress.
I was struggling to get air.
Dying, to be sure.
When I finally reached consciousness, I became aware of the dry mouth (damned, cursed dry mouth again!) and managed to get my mouth open, lick my lips a few times to get the saliva going, and take a few gulps of air.  Then I lay there and let the machine do its work, pumping air into me (and I was drinking it in for all it was worth!).
It took several minutes -- what felt like forever -- to get my lungs feeling comfortable.  It was like they had seized.
Of course, my heart was racing because I was really quite alarmed by the experience.
I thought the machine was supposed to prevent those occurrences?
The same thing happened on Friday night (Saturday morning), at around the same time too.  It just wasn't as dramatic.  And the next morning, my AHI was up to 9.0 -- obviously, I'd had a difficult night.
Last night was passed without incident, thankfully.
The common denominator, of course, is that both times when these events occurred, I was sleeping on my back.  Last night, I remained on my side most of the night.
Now, I know that historically, I only had issues if I slept on my back.  The sleep specialist's original recommendation was that I would be OK if I could "learn to sleep non-supine." 
But my point is -- I NEED to sleep supine a lot of the time.  (That's what started this whole thing, remember?)  That need will increase as my hips worsen (especially when I have the surgery and through the recovery period).
As I understand it, CPAP/APAP therapy prevents breathing cessation regardless of sleeping position.
Perhaps I'm expecting too much, too soon, of this APAP therapy.  I don't know.

Friday, July 15, 2011

Remember "The African Queen" ?

Our back yard, just out the kitchen window, is noisier than the sound effects from that wonderful 1951 movie.
We have an abundance of newly-fledged Rose-Breasted Grosbeaks whose screaming and begging would rival the SFX and Bogie for the Oscar, let me tell you.
We had no idea such tiny creatures could create so much racket.
There must be 15 or 20 of them because we have at least five families nesting here, with an average production of about 3.5 babies per family.  The population explosion is a result of our having decided to leave the suet feeder out all summer, rather than taking it in as we usually do.  Hence, the colourful birds have stayed with us rather than moving off into the Grove to raise their young.
Bonus for us!
Except these guys scream from dawn to dusk.  Enough to wake the dead I tell you. Sometimes, their crying drowns out the television in the next room.
It's really something to watch the performance the young ones put on too.
If they are on the ledge alone, they'll feed themselves.  But as soon as an adult bird shows up, they become incapable of feeding, and the crying starts.  (Sometimes, they're eating and crying at the same time.)
Usually, it's the male that gives in and feeds them, probably because he can't stand the racket any longer (much like the human race?).  Mom -- like Moms everywhere -- can ignore the whining.  She likely figures it's time the young started earning their own way.  Which, in this environment, isn't too difficult since we're spending a king's ransom keeping them in feed.  I recently observed an adult male trying to ignore the cries of the young bird.  And the young'un actually charged at the adult, insisting that he feed him! 
We often wonder if these birds might have difficulty when it's time to leave for the south -- they'll truly need better survival skills than are required around here.  At least they'll have good fat reserves!
The Pileated Woodpeckers are interesting to watch too.  They come several times a day to entertain us at the suet feeder (they are the reason the feeder stays filled all summer).  Often, they announce their arrival from the distance (almost like they're saying, "Clear the way, here I come.").  And they always say goodbye when they leave.  (I like to think they're saying, "Thanks for the great meal.")
Combine grosbeak screams with the hyena laugh of the Pileated Woodpeckers, shrieking jays, moaning doves, rattle-chattering Wood Frogs, and the haunting songs of the Hermit Thrush, Virio, Oriole, Crested Flycatcher -- and you'd have a fabulous sound track to embellish the scariest jungle movie.
Not to mention the Sapsucker pounding on the eaves of our steel roof (you'd think he'd have realized by now that he's not making any progress).
Or the Barred Owl that, from time to time, does his "who, who, who-whooooo are you?" about 2:00am just yards from the bedroom window.
Friends like to come by for sundowners on our porch because it's so peaceful and quiet.
Yeh, right!
It's like a trip on The African Queen.

Thursday, July 14, 2011

Five weeks and counting

Today marks five weeks since that steroid injection in my left hip joint.
And I continue to enjoy its benefits.
Everyone who sees me has the same reaction.
"How come you're walking like a normal person?"
"You get THAT much mobility from one shot?"
It is truly amazing.
And to think that I can expect this degree of mobility after my hip is replaced!
My weight loss efforts aren't happening though.
In spite of the increased activity (and there's LOTS of increased activity) my weight simply isn't budging.
Guess I'm just gonna have to cut back more on what I'm eating.  (I really don't eat all that much but a woman's gotta do what a woman's gotta do ....)
My right hip is starting to object to the increased activity though.  But I'm kind of ignoring its complaints right now.  The pain is just a nagging ache and not yet unbearable.
In any event, I'm going to enjoy the benefits of this mobility while I can because unfortunately, it will end.  And when it has run its course, I will again have to endure that God-awful pain and lack of mobility until the surgery happens, whenever that might be.
In the meantime,
Heaven ...
I'm in heaven...

Wednesday, July 13, 2011

Apparently, I DO have Apnea

I went to see the CPAP guy yesterday to get my readings since last I saw him.
I'm having some serious apnea events and we have to do something about it!
My breathing cessations are lasting as long as 33 seconds.
That's too long, which means I need more pressure.  He'll increase it to 14 (the original prescription from the lab was for a pressure of 12).
And I'm having an average of 10 apnea events per hour.
That's too many.  Which means that I in fact DO have apnea, in spite of what the sleep lab results showed (at the lab, I only had 2.8 events per hour).
We discussed my problem with dry mouth (and the totally contradictory phenomenon of drooling at the same time).  He is perplexed.  (I explained about my doctor's theory that I must have been made on a Monday.)
He wants to get my apnea events down to five or lower so he gave me a different machine.
I am now using an APAP -- Automatic Positive Airway Pressure.
This is one smart baby let me tell you.
It has a heated tube so that the air temperature is controlled to a precise setting, totally eliminating the problem of too much condensation building up in the mask (and drowning me while I sleep).
It is 80% quieter than the CPAP machine that I had (and I couldn't hear the other one!).
If there is minor leakage at the mask, it will adjust for that.  I need not worry about it.
And it adjusts the pressure level to what I need, as I need it, according to my breathing.  The CPAP was providing the same pressure all night long (continuous pressure vs automatic pressure).  Rep guy will be able to confirm my optimal pressure range from the reports it provides.
I can check the unit in the morning and it will tell me if the mask was on properly AND it will tell me how many apnea events I had per hour.  So I can find out each day if I'm making progress.
I can honestly say that I slept much better last night than I have in many.
I certainly slept a lot more comfortably.
I still woke several times though.
And I still had dry mouth, just not quite as bad as it has been.
But one thing I was acutely aware of was that I was able to breathe through my nose using this machine.  I hadn't been able to do that with the CPAP (perhaps the continuous pressure was too much for me?).
And my apnea events per hour last night were only 9.9 -- woo hoo, I'm making progress!
This machine will provide another beneficial report too.  It will tell us if my apneas are coming from an obstruction in the throat (Obstructive Sleep Apnea) or from the brain (Central Sleep Apnea).
Now that's one smart machine!
In any event, my more restful sleep last night may have been the cumulative result of having used the CPAP for the past week.  (Perhaps I would have hit this progress level even had I not switched machines.)  Or, it may be because of the switch to the APAP unit.
Whatever the reason, it is more progress and that, my friends, is a good thing.
I see the rep guy again next Tuesday so he can find out how I'm doing with these latest changes.  I'm sure he'll be impressed.  I might even be down to only eight events per hour by then!

Tuesday, July 12, 2011

Yet more progress

I'm still progressing with the CPAP unit.
At least I've made it through two more nights with the mask.
On Sunday afternoon, I fell asleep in front of the television for about an hour, just before the ballgame started.  I woke up on time to see first pitch though. 
Falling asleep in front of the television is a no-no, apparently.  Now that I'm using the CPAP, if I need to nap during the day, I'm supposed to go to my bed, hook myself up and sleep with that danged thing on.
Yeh, sure.
In your dreams, baby.
Anyway, on Sunday night (well, Monday morning), I ony managed to leave the mask on until 4:30am.  That's when I woke and decided that I'd had enough.
You see, I'm still waking far too often.
For what, I know not.
But when I wake, I'm acutely aware of the dry mouth.  And the fact that I need to scratch my nose -- something that is impossible to do with that stupid mask on.
I did manage to go back to sleep, without the mask, until 6:30am.
And I fell asleep in front of the television again -- this time for about a half hour around 2:00pm
And we had dinner guests last evening (step-son and his wife) and I was truly fighting to keep my eyes open through the dinner chatter.
Ooops.  Guess my daytime sleepiness score isn't improving much yet.
Last night, I left the mask on all night.
Today, after my physio session I again take the machine to the rep guy.
It will be interesting to see what the readings are this time.
I'm not yet feeling better than I was before I started using the CPAP.
But at least I'm feeling better now than I was in the first week on the machine.
And that is progress.

Sunday, July 10, 2011

I'm almost there

At least, I guess I'm almost there.
I've passed two consecutive nights keeping the CPAP mask on right through.
Kept it on all night long.
Woke several times, mind you.
But I didn't remove the mask.
I persevered in spite of adversity.
On Friday night, I woke numerous times to reset the humidity level since I was still very dry mouthed and/or getting too much condensation.  Just couldn't seem to hit a happy medium.  And I didn't feel particularly rested yesterday either.  In fact, whilst I was reading my morning newspaper I was falling asleep.  Obviously, the machine has not yet impacted my daytime sleepiness score.
Last night, I again woke numerous times although I think I have the humidity level at the proper setting now.  I'm still dry mouthed, but not nearly as bad as before.  And there is only minimal condensation in the mask.
I'm sure there is not supposed to be any condensation, and one should not have dry mouth at all.  That is something the respirologist might have to address in more detail when I see him on Tuesday.  I don't know what other humidity level I can try.  If I turn the humidity any lower, I still have dry mouth and the colder air aggravates my asthma.  Can't win for trying!
At least I'm leaving the machine on all night now.  That's progress!
And today, I don't feel any worse than I did before I started with the CPAP.  That too is progress because last week the machine was definitely impacting me on the negative side.
So I would expect that each night should improve and perhaps by the time I see the rep on Tuesday, I might even be able to report that I'm feeling better.  That would be tremendous progress indeed.
Suffice to say that as things stand now, since I'm tolerating the unit all night long, I guess I'm going to continue with this experimental treatment for the rest of the month.  There is no good reason to pull the plug now that I'm not feeling and worse for wear.
Based on reports from other users, and from the experts, I have every reason to expect that I should start feeling the benefits before too much longer.
I won't find out if I don't stick with it.

Friday, July 8, 2011

Here we go again

I had another disastrous night with that danged CPAP machine last night.
Rep guy had called me yesterday and put my mind at ease about the broken unit; no problem, he would replace it if I wanted to drop in whenever it was convenient.  In the meantime, I could just use the elastic band to hold it in place, and he recommended changes to the humidity setting that he thought might help me.
After putting in a day on only about four hours sleep, I was fairly well done for by about 7:30pm (fell asleep and didn't even see first pitch!).  So I hobbled off to bed around 8:15pm.
Got myself all prepped and hooked up and hunkered down to go to sleep.
And every time I exhaled, the machine gave out a low whistle.  Turns out my elastic band wasn't holding the cover quite tight enough.  So I dug out some masking tape and jerry-rigged a temporary fix.
It kind of worked.
Sort of.
At least I went to sleep.
Only to wake at 11:30pm, desperate for moisture, coughing (or trying to cough), and aware that a headache was setting in.
Off came the mask.
For the night.
I wasn't going to take any chances of having a repeat of my first night with the machine.
Woke again at 2:00am and John asked me why I didn't have the danged thing on.
"Dry mouth," I replied, "and it gave me a headache again.  End of experiment."
When I woke for the day at 5:00am, I still had the headache (and wasn't yet fully recovered from the dry mouth).
I took two rapid release extra-strenghth Tylenol and hoped that would take care of the headache.
It didn't.
When John got up, I asked him if he'd take me to the rep guy right after breakfast so he could replace the faulty humidity chamber unit.
Before we headed out, I took a Maxalt to rid myself of the obvious migraine that had developed.  By the time we were on our way, I was starting to feel much better (wiped out, but better).
We arrived at rep guy's office just after 9:00am this morning and he had already started his session with his first appointment, so we had to wait until that was over.  But he saw me immediately he was finished, and it didn't take him long to exchange the units.  He took the time to look at the results from last night which confirmed that there had been a steady leak -- obviously from the chamber cover not being closed properly.  He wished me luck with the new unit.
I see him again on Tuesday next week, for our regularly scheduled appointment.
God, I hope I'm functional by then!

Thursday, July 7, 2011

Last night was a disaster!

Well, last night was a disaster.
When I put the CPAP machine together yesterday (after having taken it to see the rep), the chamber cover would not lock. Every time I closed it, it popped open again. On inspection, I noticed that it was broken. (It obviously had not been broken prior to my having taken it to the rep, and it must not have been broken while I was there because he hooked it up and tested me at the higher pressure level, albeit without water).
Anyway, I decided to try it without the catch, and as soon as the water heated up, the cover would bounce open and the machine started whistling -- that just wouldn't work. So I secured the lid with an elastic band and tried again.
With the higher pressure, and the tube wrapping, and the tighter mask, I was ready to go. Almost immediately there was water dripping on my face (inside the mask). No leakage whatsoever, but definitely water inside. Humidity too high? I turned it down. Still water dripping on me. That is unbelievably uncomfortable (and it was worse than it had been at the lower pressure level).
I tried about four times (wiping myself up and drying the inside of the mask between attempts) and the same thing happened each time. So I gave up in frustration and just tried to go to sleep.
Sleep eluded me though cuz I'm concerned that I will be held liable for the broken chamber cover.
I certainly did not abuse the machine but I have no idea what happened to it or how it got damaged.
I left an emergency message for the rep this morning.
Not sure how we proceed from here.

Wednesday, July 6, 2011

I don't have Sleep Apnea

But I DO need to use the CPAP machine.
What I have is known as Upper Airway Resistance Syndrome (UARS), "a type of sleep-disordered breathing associated with arousals from sleep. The symptoms and causes are similar with obstructive apnea, but the patient doesn't stop breathing in sleep; he wakes up before any attempt of breathing cessation." 
Not only are the symptoms and causes similar to apnea, so too are the consequences of non-treatment, and the treatment.  UARS is treated with CPAP therapy.
So, rep guy (who is a respirologist) addressed my concerns about the excessive dry mouth. (Although the unit seemed to be performing properly for me, there were numerous leaks each and every night during the past week.)
I apparently had numerous apnea and hypopnea events each night, but he wasn't convinced that the readings were accurate, due to the high level of leakage.
But the readings did convince him that the pressure was not sufficient for my needs so he increased it (but only by one for now).
He wrapped the tube with a cover to help prevent condensation since I need the humidity set at a higher level than might be optimal (he assures me that will change as I learn to breathe through my nose).
By the way, he was agreeable to allowing me to follow the strategy I proposed (putting further testing on hold until September) but he ended up convincing me to try the unit for one more week before putting that strategy into play.
I came away from today's meeting with a much better understanding of why I have a history of difficulty with anaesthetic and my fear of same is now much lowered.
When he was explaining that I have UARS, he commented that I would present a challenge for anaesthesia.
Naturally, I jumped on that, and told him that anaesthesia most certainly is a challenge for me.
He said that he meant that getting a breathing tube down my throat would probably be difficult because of the physical obstruction presented by my airways.
I told him about my experiences waking up from surgeries not being able to breathe, and he assured me that those incidents would not repeat themselves.  Now, immediately that I arrive in the recovery room, a respirologist would be waiting for me, ready to hook me up to my CPAP machine.
Our discussion convinced me that this is a therapy with which I should continue.  My survival could depend on it.

Tuesday, July 5, 2011

My CPAP Strategy

OK, so here's the deal.
Seems I'm not tolerating that blasted mask for more than four hours tops.
The past few nights have been passed in shifts.
Admittedly, each night the shifts get longer.
I've been wearing the mask for a few hours; removing it for a few hours; putting it back on for a few hours.  Then it's time to get up for the day.
Last night, there was only one shift with the mask.  I managed almost four hours before I had to rip it off.  Just couldn't bear it any longer.
The dry mouth that it induces is ridiculous.
So too is the sweating around the perimeter of the mask.
Not to mention the itching.  And when my nose itches, I can't get at it without removing the stupid mask!
As I've already said, I'm not convinced that I'm a candidate for CPAP.
But I don't think it's fair to pull the plug just yet, especiallly since I've not actually spent a full night with it on yet.
I'm simply not prepared to forfeit what little time I have left to enjoy the benefits of the steroid injection.
Soooooo, when I see rep guy tomorrow, here's what I plan to propose we do.
I'm going to suggest that we put this experiment on hold until September, which will allow me to enjoy my summer.
By that time, the benefit of my sterioid shot should have run its course.
The weather should also be a little more amenable to whatever discomforts the current heat is adding to the mix.
Then perhaps we might get a better read on whether or not my snoring is an issue that needs to be addressed.
Now, I have no idea if my plan is workable without again going through another sleep lab.  I'll be seeing the sleep specialist at the end of July and would obviously have to own up to what I've done.  She may or may not concur with my strategy.
But it's my strategy and I'm sticking with it.

Monday, July 4, 2011

Sunday, July 3, 2011

My CPAP update

So, this CPAP experiment isn't very promising, if you ask me.
On Friday night, after waking for the fourth time, I took the damned thing off at 4:30am and went back to sleep for a couple of undisturbed hours.  Woke at 6:30am feeling better refreshed than I had all week.  But on an encouraging note, when I checked the machine, there was no "high leak in last session" message.  So it would seem that I'm at least making progress.
Last night, I woke at 11:30pm and removed it because I couldn't bear the dry mouth.  When I woke at 2:00am. I thought I'd try it again, so on it went.  But at 2:30am, I was awake -- the dry mouth was worse than ever.  I turned the machine off and checked the reservoir.
Oops.  I hadn't put any water in it before retiring.
My bad!  I corrected that boo-boo, donned the mask again, turned on the unit and drifted off to sleep.
By 5:00am, I'm awake again because of dry mouth.
What in hell is it going to take?
I'm not at all sure about this experiment.  (I do seem to have resolved the leak issue, though, since again this morning, there is no error message.)
My good friend, RLR, who has been using a machine for two years now, tells me that it took her a good six weeks to adjust and start to feel better.
Well, folks, I don't have six weeks to invest in this.
I mean, in the long term, of course I have six weeks. And if I actually had sleep apnea, I might be more inclined to stick with it.  But my problem is one of snoring and we're doing this to find out if snoring is impacting on my daytime sleepiness factor.
It's just ... the timing is bad.
You see, I have a finite amount of time during which to enjoy the benefits of that steroid injection.  It's been three weeks already, and one of them has been lost to this experiment.
Should it take me another five weeks to figure out the CPAP issue, that would suggest a majority of my "heaven time" being lost.
Last year, I had twelve weeks of heaven from the steroid shot.  I may or may not get that long this time.
I'd like to enjoy all the weeks available to me, not waste the bulk of them struggling with the CPAP machine.
However, I do want to give the CPAP a fair assessment before abandoning it as not worthy.
Oh what a conundrum this presents.