APAP Machine Rental?

[wantsomeenergy]

Hi all

Im a newbie here, so sorry if I have written this in the wrong place!

I have suffered what i would now describe, after a lot of reading and taking questionnaires (I got 15 on the Epworth scale), as the effects of sleep apnoea for my whole life. Realising that I stop breathing and wake up gasping for air with heart racing was the thing that really made me suspect it.

I have repeatedly asked my doctors to send me for a sleep study, but the best I ever got was a non-commital "well we could refer you but you'll have to wait a year". Their attitude was kind of "whatever" and one doctor even told me that because I was not obese and over 45 that I couldnt possibly have OSA. Yeah. Educated. Basically, I have figured out that if I am going to get any sense on this I need to take matters into my own hands and forget about doctors.

Anyway, I bought a SleepStrip from Intus (Hello James) and it recorded a '1'. Im not sure if it just takes an average. It took me an hour to fall asleep plus a number of awakenings during the night, which would have brought the average down because I would have breathed normally while awake, but anyway I get the results back this week. A '1' means 'mild sleep apnoea'.

Depending what happens next, I am thinking of taking the home oximetry test by them too. But this leads to my next step after that, and my question.

I know that Respironics do a CPAP rental, called M.O.S.T, but if I am unlikely to ever get anywhere near a sleep technician to have a pressure titration done, then clearly I am going to need APAP. But I can only find APAP to BUY, and Im concerned that I will buy a unit and experience no change at all and have effectively wasted a lot of money.

So, is it possible to rent an APAP machine, or alternatively to take a trial period with one? I feel that the NHS route (at least here in Aberdeen, Scotland) is basically the same as 'do nothing' so I feel that option is out, barring a pitched battle and letters of complaint to various people

Thanks for reading

[Sleep2Snore]

Hi wantsomeenergy

I can't answer your question about rental.
I think you need to be quite assertive at your doctors and insist on going for tests at ARI.
I was tested there before being dispatched to Edinburgh to get further tests (ah the good old days)!
Though running up and down to Edinburgh was not funny every time you had a problem.

I don't know what (if any) the waiting list is in ARI to be tested these days, but when I was there (longer than I care to admit) I was in for tests the same week.
Mind you they mucked it up first time, so had to go in for second night.
This was all before test labs, you were dumped into a ward full of patients then!
I hope you find a solution.

Let us know how you get on.

[James @ Intus]

Hi and welcome to the forums.

I'm not aware of anybody offering APAP rentals. We have considered it but given the hygiene issues, delivery and costs, it turned out pretty much as expensive for the user as a purchase. Some hospitals for example throw away their trial-PAPs because of fear of cross-contamination.

If the SleepStrip showed a 1 and you know you were awake for a significant amount of time, chances are that period of wakefullness diluted the index so maybe you woud have tipped into a 2. A pulse oximetry test will give you much more information on severity which then leads to a better understanding and justification of a possible therapy purchase.

But even if it's mild, see this recent article. You would still be at risk so even in such cases, an APAP is a useful investment.

Health-wise, if you have the budget available, a pulse oximetry and then the therapy purchase will be worth your while. If you are still not sure about the APAP purchase, with the pulse oximetry report you have a stronger case with your GP to refer you for NHS funded treatment. You will get a full report saying clearly you have it (or not) which the GP just cannot deny.

So IMO the best step is the pulse oximetry test to either convince the GP or to allow you to get your own equipment.

[wantsomeenergy]

Hi guys

Thank you for your replies! S2S, nice to meet a fellow local! To be honest I am sick and tired of having to be assertive with my doctors - I have come to the conclusion that I just dont have very good ones, and I have had to fight with them over other things. I dont have the energy to do this every time theres something wrong, to be honest I have had to solve my own medical problems many times recently. I am half inclined to write a letter of conplaint to someone as this is the third thing its happened with - its like having to negotiate every time to get the treatment im entitled to and I dont need the anger! I think things will have changed a bit since you were in ARI - two of the docs (I asked twice to see if one doc was better than the other) and the best reaction I got was "1-2 year waiting list" ... Meh. They are just rubbish (Northburn Medical Practice - AVOID).

Hi James - yes thats what i was wondering, but then I guess the Strip is only a rough guide - the fact that it confirmed even 15-34 apnoea events per night is shocking enough! Hopefully the oximetry will be enough to convince a Doc, but as I said above, my doctors are extremely poor and I have had to fight with them on many issues already - I think that my Practice hasnt quite caught up with 2008 (and all the other docs Ive tried to tranfer to just say "we're full"), and so this is why I just go private almost as a reflex nowadays. Unless you sit and shout at the doc for 10 minutes, you get nothing, and when I am feeling awful because of not sleeping, having yet another fight with yet another official just isnt what I want. Unfortunately it seems that some people arent paid enough to actually listen up here ...

Anyways I am anticiptating a wait to get a titration, and as Im tired (pardon the pun) of waiting, it looks likely that i will buy an APAP, probably need to get a loan to buy it, but still, once I am actually over these damn symptoms, have some energy and can get back to work, then I can pay it off.

Yours very angry with the NHS

WSE

[Sleep2Snore]

That Medical Practice is shocking going by what you say
I think you need to go in and fall asleep while talking to the doctor

You need to get referred for a study. I had a lot of bother trying to get referred as my doctor just said "It never killed anyone"!
I think that attitude stinks, but however he reluctantly put me in to ENT and they did listen, luck that I got the right consultant (at the time they were just getting into OSA) and he said before he puts me to see a surgeon he would do a test for OSA. So I was sent to have a study done. This was before most doctors were aware of Sleep Apnea, so in a way I was lucky.
My wife had watched me sleeping and had wrote down all the symptoms I had while sleeping and this made the consultant agree I may have OSA.

After the first night I felt better (even though the results were lost) I got the benefit of a second night on a machine that found its own level to run at and felt great after the second night.

I think you just have to persist, go back and ask them to refer you.
If the waiting list is 2yrs, you may have to take things into your own hands meanwhile.

2yrs is a long time to wait!!!

[wytco0]

Its clear that being obese is a factor in OSA and its known that this accounts for a significant proportion on OSA sufferers ( I have seen figures of 40-50%) this does of course mean that 50-60% of sufferers are not obese.

The only time I have met other OSA sufferers was a couple of weeks ago when I went to pick up my machine and this was done as a group with 2 others. I am definitely obese but both of the others were not, indeed one of the other I would suspect was underweight and he had the highest number of events per hour.

[wantsomeenergy]

Hi!

Sleep2Snore - thanks again for your reply, its good to have some support and to hear from someone who has ridden the rollercoaster too! TBH I was going to get the oximetry done and then take the results to the doc, though I have found out there is another Docs practice nearby which is meant to be good! So perhaps if I get no joy I will go elsewhere. James @ Intus said that the home oximetry should be failry convincing to a doctor (maybe not MY doctor???) so perhaps that will help. As you say, if there is still a silly waiting time, perhaps I will try a new doctors surgery or alternatively add a chunk to my loan and get myself a self-adjusting CPAP machine. I rather like the look of the SleepCube APAP with humidifer, very fetching! James - can I get a discount for being a forum member and loyal customer?? Lol I'll give you 300 quid and a packet of peanuts

Wytco0 - I am glad to hear that. Well, not glad for the poor guy with the multiple events, but its useful to know that being very overweight is NOT requirement. My BMI is 28.5 and all the fat is round the middle, so even though I look quite slim in fact I am classed as 'overweight' for my height ... BEER BELLY (without the beer as I've not drunk in months) ... I just hide it under jumpers

Hope you guys are getting on well with your CPAP if you are having it, I really cant wait to see if it helps me, a lifetime of never feeling like Ive slept feels SOOO close to being a future lifetime of blissful (if mechanically assisted) slumber At least its not an iron lung ...

[James @ Intus]

I rather like the look of the SleepCube APAP with humidifer, very fetching! James - can I get a discount for being a forum member and loyal customer?? Lol I'll give you 300 quid and a packet of peanuts

Just a few more posts and who knows... We prefer Haagen Dasz over peanutes here though.

[wantsomeenergy]

OK but the Haagen Dazs might melt in the post. Melty Belgian Chocolate might be quite nice, but when the package arrives with a brown splodgy mess you might think its an angry but wordless complaint from a previous customer

I read elsewhere that someone had had a bad experience with APAP because as it tried to find the pressure on each breath, there was a delay in the airway opening and so the person was still getting apnoeas. How does the SleepCube fare on this? I am guessing that the hardware has a response time programmed in, if its in milliseconds then I wouldnt be too worried, but if it takes a few seconds to go "hang on, theres not enough pressure" then Im a bit worried. Maybe I am being too opitmistic, but I want a solution that catches all my apnoeas I guess even CPAP has a weakness here in that, if you have an "overpressure" apnoea for whatever reason, then the machine wont catch it, and I guess APAP has a better chance of catching that ...

I suppose what Im after is 'pros and cons of APAP' and what to expect realistically

[James @ Intus]

Explaining the APAPs algorithm is a bit like preparing you for a Chinese language exam in under 4 hours. The below is heavily simplified (disclaimer).

The SleepCube has many sensors, some of which it uses to prevent (hypo)apnoeas by being proactive e.g. if a snore preceeds an apnoea event, by the next snore it will up the pressure a bit to avoid the expected apnoea.

It also operates reactively. If airflow drops because of a blockage it ups the pressure to open the airway.

It's not so much per breath although it does look at every breath. After reacting to an event, it will stay high for a number of minutes to prevent further events, then slowly lower again.

Also note that over time, it's possible to adjust the lower and higehr pressure to sit more closer around your average so it's more accurate.

Your CPAP vs APAP scenario is correct and both have their down sides though being technically superior in many ways, most people prefer the APAP. Not the least because it will adapt during colds, when gaining/losing some weight, when rolling over on your side or back etc. The machine will adapt with you. The algorithm may get it wrong every now and then, delivering slightly too much or too less pressure but more often than not it's worth it over the "steady as she goes" attitude of a CPAP which may be too high or too low all of the time, until your next appointment with the hospital.

All in all, research shows APAPs get it right over 95% of the time. The other 5% may cause an unnecessary high pressure peak which may or may not wake you or a pressure too low which may cause the odd event. In rough terms (again, generalized for illustration), if your AHI was 40, you can expect it to drop to below 2 straight away, meaning you are clinically free of OSA.

[wantsomeenergy]

Hullo

Thanks James, that answers my questions I think. Sometime this week I know I will be getting my full results from the sleep strip back, and then i can think about the next step I guess. I think around Wednesday as it said it would take 7 days to be processed.

I think if APAP works I will actually cry - this has been a lifelong problem and if it turns out to be the solution I might get a bit teary In a good way It really could be a gateway to a completely changed life for me.

[Sleep2Snore]

Good luck wantsomeenergy.

Hope it all works out for you

[wantsomeenergy]

K well going to be taking the next step this week - the home oximetry! Dad said hes happy to help out with costs (Im on benefits ) and so will have that all done soon. Cant wait to have my finger squashed and my oxygen levels measured

Then it will be a case of looking into APAP options and how to afford it. Intus dont do a finance option, so its possible I may have to extend my loan, or perhaps Dad will give me an interest free one until I can get back to work. If the machine does what it says on the tin, then hopefully I will be back working asap so wont have to feel too guilty for too long...

Feel like I am gradually making progress!

[wantsomeenergy]

Meeeeeeee again

One home oximetry thingie ordered! Should be here soon. Dad has said he will give me an interest free loan to buy the machine that I will have to pay back once Im working again ( but ) and I am looking at getting the all singie dancing SleepCube APAP with all the trimmings.

I cant belive that its possible that I might actually be SLEEPING PROPERLY within a couple of weeks ....

[James @ Intus]

Not so fast, let's do the test first