Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Welcome to our Forum - Feel Free to Introduce Yourself Here.

Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers. 

Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation.  Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.

 

Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

 

Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum.  Don’t be shy in posting and sharing, as we’re all in this together and to help each other.

Best Wishes for good sleep!

Kath

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It would probably help the nice folks n here to help you if you mentioned which model of machine you are using? Also where you are in the world?

In the meantime checkout http://www.cpap.com/cpap-hose.php

Christine Ranaldi said:

This is a fantastic support hub, I don't have a consultant as such I only see sleep nurses. They are really nice but I feel you just get left to get on with it! I was wondering if anyone could tell me where to get a longer hose for my machine, any help would be great.

Lots of people in different clinics don't seen consultants Christine once they're on good therapy unless problems arise and are handed over to the sleep nurses/techs.  At my own clinic we do see the consultant every time, but this is more rare.  If you ring your nurses at the sleep clinic they will probably be able to provide you with a longer hose.  They give out the standard 6 ft ones, but do have longer ones when the need arises.

Christine Ranaldi said:

This is a fantastic support hub, I don't have a consultant as such I only see sleep nurses. They are really nice but I feel you just get left to get on with it! I was wondering if anyone could tell me where to get a longer hose for my machine, any help would be great.

Most clinics have longer hoses if you ask for them.  I have a longer one, it is almost a meter longer (3ft to be exact), I asked for a joining piece to join two hoses together and they asked how long I wanted the hose to be and when I said they said, they had hoses to reach where I wanted.  So if you want one ask the Sleep Nurse.  Mind you I did notice a slight drop in pressure as I have a CPAP and not an APAP.  However, I just increased the pressure slightly to compensate, or rather they did.  If they don't carry longer ones ask for a joining piece.

Christine Ranaldi said:

This is a fantastic support hub, I don't have a consultant as such I only see sleep nurses. They are really nice but I feel you just get left to get on with it! I was wondering if anyone could tell me where to get a longer hose for my machine, any help would be great.

Hi Kath & mike and everyone, this my first time on the forum, I have had a diagnoses of sleep apnoea for about 5 years and have been just muddling along with my machine since diagnoses.  I hope to get time to read through peoples posts and see what advice etc is out there.

I discovered the forum and then started thinking "why on earth didn't I think about support groups before" because I decided I would very much like to go camping or caravanning again and thought there must be something out there other than a mains hook up and as I started to research the issue I found this forum and thought well this is a revelation somewhere to share knowledge, experience and give support.

I haven't got very far with the portable power idea other than battery's at quite a cost designed for my res med unit but iam trying to work out what power inverter might be useful as this would be much cheaper and easily obtainable they just hook up to a car type battery and give power...its just which one is the one I might need, if anyone has been down this route any suggestions would be most welcome.  look forward to reading post gaining and sharing knowledge and experience.

First you need to read Cpap manual for power supply to calculate how much power to draw

Second purchase inverter according to power outage maybe little more

Third you will fin it difficult to run humidifier next to impossible



99 said:

First you need to read Cpap manual for power supply to calculate how much power to draw

Second purchase inverter according to power outage maybe little more

Third you will fin it difficult to run humidifier next to impossible

Thank you so much for this, I don't generally use the humidifier so hopefully it will be easier.  not sure how long a car type battery will last but I'm willing to experiment.  thanks again.

Hi

There's a useful article here which points out that an inverter is very inefficient, converting 12 volts DC up to 230 volts AC (UK) so your CPAP machine can convert it down to a low DC voltage again wasting around 50% of the battery life. Instead you should use a DC converter where available.  For a ResMed S9 Escape, it's this - I don't know where you could buy one locally.

Jonathan.

I have been using few a few years whilst camping, the resmed converter and a leasure battery. I have used this set up for four nights continuous so far but do attach a cheap small solar panal to the battery in the day. It's excellent but a little pricey. Set up costs was about £140 (£60 for converter direct from Resmed, £80 for battery from a battery/tyre supplier and £10 for the solar charger from Maplins, it was on special offer should have been £20).

If you are looking for a set up for using your CPAP when power supply is not available, this is a great way.

Hope tha helps.

Steve

Glad you found us Andy and yes online support groups are worth their weight in gold and especially as at the moment people can often feel isolated with their diagnosis.  However, this won't be for much longer, now we're realising just how common sleep apnoea is.  We're the lucky ones to have been diagnosed   Good to see you're getting helpful replies to your power issue, and I recently shared this new Pilot 12 + 24 battery that has the capability to power our machines and also act as a back-up battery source if the power unexpectedly fails during the night http://medistrom.com/products.html  



stephen smith said:

I have been using few a few years whilst camping, the resmed converter and a leasure battery. I have used this set up for four nights continuous so far but do attach a cheap small solar panal to the battery in the day. It's excellent but a little pricey. Set up costs was about £140 (£60 for converter direct from Resmed, £80 for battery from a battery/tyre supplier and £10 for the solar charger from Maplins, it was on special offer should have been £20).

If you are looking for a set up for using your CPAP when power supply is not available, this is a great way.

Hope tha helps.

Steve

Thanks steve much appreciated, I have more options than I could have believed possible I cant wait to get out there and enjoy the great out doors once again.

Andy

Thanks Kath

I will check this out to.  I have only been a member for less than a day and already so many kind people have added to my knowledge and I feel quite hopeful now that there is support out there and answers to.

kind regards Andy
 
Kath Hope said:

Glad you found us Andy and yes online support groups are worth their weight in gold and especially as at the moment people can often feel isolated with their diagnosis.  However, this won't be for much longer, now we're realising just how common sleep apnoea is.  We're the lucky ones to have been diagnosed   Good to see you're getting helpful replies to your power issue, and I recently shared this new Pilot 12 + 24 battery that has the capability to power our machines and also act as a back-up battery source if the power unexpectedly fails during the night http://medistrom.com/products.html  

Great to hear you feel well supported now Andy

andy killick said:

Thanks Kath

I will check this out to.  I have only been a member for less than a day and already so many kind people have added to my knowledge and I feel quite hopeful now that there is support out there and answers to.

kind regards Andy
 

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