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Hi

What is better distilled water verses tap water.  I was wondering what is best for the CPAP machine as many say distilled is best and if you are on free prescriptions then you should be able to get it.  As my area is a very hard water area and most kitchen last only around 12 - 18 months before you need to replace them.

If I do get a new machine I am thinking about asking for distilled water so that it protects the very expensive machine.  Also because I have some many allergies it would be safer for me too use.
Dee 

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would be cheaper to buy a distiller as I would make my own distilled waters.  They arrange from £100 - £500.  The one I am thinking about £113 from Amazon.

Dee

If it's the one I'm thinking I saw on Amazon a few weeks ago DeeNJai it's from China, and on the company reviews (the seller's name had the word 'Dental' in it) people were saying their orders were taking 5-6 weeks to come.  I'd be worried about not being able to get the parts or if a fault happened.  When I'm ready I'm going to get one from H2O Labs or J D Harris here in the UK so the accessories can be bought.

ok I've been doing a bit of Maths (well my husband has!). I paid £22.95 with free delivery for the Distilled Water. I personally use about 200mls per night = 1 litre per week so should last me about 18 weeks and if we've done our maths right, this works out at approx £1.27 per week.

I have also been looking at 'how to distil water' and it could be a bit messy, time consuming and costly. I'm also not sure if I would be happy with the distillation process. I believe that using Distilled Water is not just so it doesn't damage the CPAP machine it is to do with what we are breathing in. 

 

Mind each to your own of course I just thought if I'd share with you

 

Happy, healthy breathing xx

Thanks for doing this (or should I say thank your hubby June ).  I'm 'hope'less with maths but that sounds an easier option and am sure is no more expensive than the mineral water I've been buying.  I shall definitely look into this.

My understanding is that distilled water is used to prevent the humidifier tub from furring up and hence prolonging its life.

Whats the point of using expensive distilled water when a replacement humidifier tub, say for a Resmed H5i, is about £30 

It's not just the humidifier tank people are concerned with Edam as most people get their tanks replaced by the NHS, but it's more of making sure we're taking in water that's fine for us.  Children here in the UK on CPAP and ventilators are prescribed distilled water, but not the adults!  The distillation process removes the mineral and contaminants and in the US people are urged to only use distilled water, but here in the UK they know how difficult it is for us to get hold of it so I assume that's why they don't focus on it too much.  There have been incidents of people getting very ill from using contaminated water in both their CPAPs and Neti Pots, but thankfully not in our part of the world.  We live in a hard water area and it does concern me when I've seen what the water does to the tank - the same water I'm using for 8 hours at a time.

I guess it's up to each individual as to what they're comfortable with and whether they feel the extra expense is worth it.  More importantly, is that people tip out any unused water every day, clean the tank and re-fill with fresh water.

I  think your last sentence is the most important advice as cleanliness is  most important.

I have had to buy my humidifier and also buy spare tubs and seals. Also as my hospital does not supply humidifiers they cant  give any advice as they don't know anything about them

I do get a bit niggled when I hear what most people get on the NHS. I have probably spent over a thounsand pounds on humidifiers and masks.

That's my little rant over

Hi Edam, I can understand you been niggled about having to buy your own humidifier, although I understand they are in short supply at Leeds St James' s. I must be one of the lucky ones who have been issued with one. I suppose they are not as much a necessity like the actual CPAP machine, although before I was issued with mine (being a mouth breather) my mouth and throat were so dry I could hardly swallow or move my tongue so I sympathise with you. 

I agree and it seems very unfair that people have to purchase certain things at one clinic and not at another.  I would estimate that 95% of clinics are willing to give out humidifiers though, but usually wait until they get asked for them rather than offer them.  The problem is that some people don't even know humidifiers exist and yet they can make such a huge difference to their CPAP therapy and compliance. 

I got my humidifier at my first clinic, but did have to buy my own masks over the years as they didn't supply my favourite one.  I also bought my own machine as I wanted to view my stats.  I've since changed clinics and don't have to buy anything anymore, and my new consultant insists on seeing the information from the sd card every 2-3 months, along with letting us have any mask we want.

I don't think that GP,s are aware of humidifiers either.

I demonstrated my Apap, humidifier and masks to a group of medical students and 2 GP.s from my group practice.

The GP,s were not only surprised how small machines are but also that a humidifier existed.

A few months later when I visited  my own GP he suggested that I should use a humidifier. I politely pointed out that I had demonstrated the humidifier to other members of his practice.

Hi,

On the rare occasions when I have used tap water, my tank scales up in a single use.  With bottled water it needs descaling (vinegar) every few weeks.  What comes down the hose is water vapour, so I am not too concerned about mineral deposits in the water.  They get left behind in the tank.

My sleep clinic doesn't provide humidifiers (or didn't when I asked).  Buying one was a revelation. When my initial gel mask started oozing after 11½ months I had to argue to get it replaced.  I've purchased my own masks since then.  My clinic have discharged me now, so I am never reviewed by a consultant.  I do get a free "service" of the NHS machine (less humidifier) annually.  In practice I keep the NHS machine as a spare, and use my own APAP.  As described on this site, the switch to APAP was another revelation.

Fortunately I can afford to support myself.

Jonathan.

Edam said:

My understanding is that distilled water is used to prevent the humidifier tub from furring up and hence prolonging its life.

Whats the point of using expensive distilled water when a replacement humidifier tub, say for a Resmed H5i, is about £30 

Hi Jonathan, edam, Kath and everyone else who has taken part in this interesting and useful debate. Well it's looking to me like using ordinary tap water could be coming up favourite, if it's only downfall is having to replace the humidifier tank. How can we really be sure what is being transported through the vapour in the tube; does anybody have any contacts who may have this scientific knowledge in this area? I believe we are all looking in depth at the question now, so, for future reference it would be great to get more advice (what do you think)?

I also have Bronchiectasis and cannot afford to be encouraging other 'bits and pieces' to be making their way into my lungs; of course I take lots of care to make sure my equipment is cleaned thoroughly every day. 

At the moment I will continue to use the distilled water as I have a substantial amount in stock, therefore, I have some time for more research! 

Thanks everyone 

June

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