Should I take the plunge?

[Alan R]

I have a quandary...myself and my wife have discussed which path to follow. I am waiting on an appointment to go back to a sleep clinic to see what mask suits best and to go through another sleep study with an auto-titrating machine attached to work out the pressure that suits me for a CPAP machine. I have been diagnosed with moderate apnoea/hypopnea (18/hour) and oxygen saturation to 80%.
My problem is - this could be in December. Should I just go for an APAP machine now and use the default pressures with the most recommended full face mask or should I wait for fitting and testing. I'm anxious to get things moving but this might be wrong? Is it possible that an APAP may not suit? And I don't want to buy a mask and have to spend a fortune that I don't have going through 2-3 masks to find the right one.
Your thoughts please.

Alan

[ElleCee]

Due to the price of machines, I would wait and get one for free!
That also gives you access to repairs and spares etc and help with mask fittings.

Lorraine

[Alan R]

Thanks for the reply Lorraine. Unfortunately in Ireland you get taxed for taking breaths so the chances of getting one for free are absolutely nil! To get one for free I'd need a medical card but I am in the (un)fortunate position of having a job, being married and I came from Ireland originally. You need to be any of the opposite to what I am to get subsidies like this. But that's another days argument!

[Anniett]

I managed to get on a 3 month trial programme, run by one of the major manufacturers, which enabled me to try a machine and mask. (I think I paid about £150-160 for this.) This gave me the opportunity to see if the system was going to work for me without the large initial outlay. I got on really well with it but needed a nasal mask instead of the full face that was originally supplied. I asked if they could supply one and was sent a nasal mask at no extra charge. My 3 month trial is now over and I have been able to purchase the machine, including masks and humidifier, at a VERY favourable price. (I have kept this original machine as a back up.) I would see if you can ask your consultant if he can get you on this programme. It has worked well for me but I live in the UK so am not sure if it is available in Ireland.

Anniett

[Alan R]

Thanks Anniett. I'm taking a couple of approaches on this and this is yet another option. Thanks for the info.

Alan

[James @ Intus]

Hi Alan,

Being in Ireland makes tings a little bit different from being in the UK.

Couple of things to consider:

- What does 2 months of further untreated OSA do to your health and wellbeing? If you wait, can you at least get an oral splint or something going in the meanwhile?

- In Ireland people often get put on a rental scheme where you could be paying as much as 200 Euro a month indefinetely. That adds up.

- Auto-CPAP to determine fixed CPAP is indeed what they often do. That works fine but then you are on a fixed pressure machine. If anything changes in you (loose/gain weight, a cold etc.) your pressure needs may change but the machine won't care about that. An APAP has its advantages here, makes you less dependent on seeing the clinic for pressure changes.

What's best? Only you can tell as it very much depends on your personal circumstances. I'd try and find out what you can expect in terms of rental costs as this can give you a good cost comparison.

[Alan R]

Hi James,

Thanks for the reply. I won't be going down the road of rental...financially it doesn't make sense.
I agree on the APAP being a better option if not initially a little more expensive especially for the reasons you specify. I would also ask that in this same reason that a full face mask be more appropriate if a cold was an issue (OK, personal preference will dictate too).
An oral splint - that is to suggest OSA rather than central sleep apnoea. Not sure if this would help as yet but I'll have to contact the clinic to verify, thanks. I'm hoping for a cancellation - this worked out fine for the initial test when I got in after 3 weeks. So I'm hoping for the best. The unfortunate part for people in Ireland who don't have private insurance is that they'll wait 18 months to get their first appointment so I consider myself lucky in a way.

Alan

[Barely Awake]

Have only recently started reading about complex and central SA after there was another thread recently where someone was saying they had been given a BiPAP auto SV Advanced System One to deal with their complex sa. If you search the site you might find the thread (I had a go but I am rubbish at searching - my wife calls it man-looking!).

[Alan R]

Thanks BA...I'll have a look.

[symmit]

From my experience my spend has been so far (give or take)

Sleep study £100
Machine, first nasal mask and humidifier £700 (after 100 refund of sleep study)
Full face mask for colds £120.
10 ft hose from Ebay £30 (after hitting myself on head and covering with water with falling cpap machine)
Sleepweaver for comfort £100
Quattro FX (didn't like the first fullface mask) £120
Pack of 5 filters (ebay, £20)
Oximiter (ebay) £80

Next month will be one year on, and I'll need to replace the sleepweaver soon.

Total costs for a year £1270, I've used tapwater (soft water area) in the humidifier and some electricity. Next year I predict my minimum costs will be aother hose, some filters and a mask or two, so maybe 200-300 quid. I'd like a second machine too as I travel a lot and am a bit paranoid about loss/theft/damage...

Let me put that into a little bit of context though. I'm self employed. When I was untreated I couldn't work more than 3-4 hrs a day, sometimes at all, due to tiredness and stress. I would also hire a driver if I knew I needed to spend more than 4hrs in the car Now I can do 10 hr days and drive 4 hrs each end of that.

In addition I'm not suffering high blood pressure in the mornings.

If you choose to pay for your own treatment and can drop 1500 quid in year one it's probably a good way forward, the ongoing costs are quite low but put away some cash for a new machine every 3 yrs would be be good contingency.

It also makes you aware of how companies can make a profit at 200 quid a month rental...

[Alan R]

Thanks for the experiences! Initially you'd think - CPAP machine, humidifier, hose and mask and I'm done...looks like it isn't as clear cut as that.

Sorry, but couldn't help but laugh at your reason for the 10ft hose.

Alan

[Grumpy]

Hidden costs

Add a hose lift at £20 and a compact extension reel (say £5) for when staying in hotels etc. Depending on the quality of your water supply you may need to buy distilled water or a filter jug and filters.

I'd bank on at least three masks before you find two that suit you; two because a change is as good as a rest!
I swap between Mirage Liberty (the one that seals around your mouth and then has nasal prongs) and the Quattro FX.
The Liberty is great until you have a cold. The Quattro is great IF you can get a good seal; some nights I can, some nights I can't. Alcohol free facial wipes help; give the mask and your face a wipe down before bed time to get rid of oils. (Tesco own brand are cheapest by miles).

I'd wait until you have tried out some masks at the clinic just to give you an initial idea; particularly whether you need nasal only or full face. If you have to buy your own machine I'd definitely stump up the extra for APAP (I've just bought my own S9 Autoset despite the NHS supplying an S8 fixed).

BTW you WILL need a humidifier and heated hose. So best going for an integrated solution like the F&P Icon or Resmed S9. (I picked the S9 simply because I managed to get hold of a copy of the clinician software).

In the meantime if you suffer from nasal congestion have a look at the Sinupulse threads on here; best £120 I've ever spent.

Good luck!

[Alan R]

Thanks Grumpy. The clinic have recommended I wait until I do the testing and introductions with them so it's only a few more days so I'll hold off. Interesting views though on the previously unheard of techniques like the facial wipes - something I hadn't been aware of. In my innocence I thought - plug in machine, apply mask, sleep...wake up feeling like Superman.
Think I need to read up a little more!!

[Tigers Fan]

Plug in and sleep rigs are available for pre-order (don't you just hate that?) right now. We anticipate a cost of approximately £20, 000 in today's terms and an availability of 2050 earliest if all goes well. We are also working on a moon-jumping pogo-stick but that is still in early developmental stages.

The term, "taking the plunge" suggests to me action, not prevarication. Perhaps "Dithering on the edge" would have been more appropriate. You'll still have a lot of time to decide what to do after your NHS appointment, I'll wager.

TF

[Alan R]

"Dithering on the edge" makes it sound like I need to be pushed in one direction or the other - just looking for peoples thoughts and not knowing how soon I would get a call back from the clinic I was weighing my options hence the "?". My option is now to wait until I get this visit over with. Your initial comments - wit or sarcasm...difficult to tell. I'm coming to this forum for information and giving my thoughts at this stage of my progress so that others who follow can think they're not alone. It certainly wasn't titled with a prevarication.

You'll still have a lot of time to decide what to do after your NHS appointment, I'll wager

I would if it were the NHS. Here in Ireland you get told what settings, mask & machine that would suit then it's up to you. I'd be careful on making wagers!