"Yeah I was wondering about email address. I thought probably if they wanted me to mail them they would have given out an address. I can imagine heart data is considered more acute than sleep data, so it would make more sense to have that…"
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
Views: 13789
Replies to This Discussion
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Permalink Reply by Kath Hope on
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PS Just had word with hubby who's offered to drive me to you in the snow, bearing in mind you've just had pneumonia.
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Permalink Reply by Greg Harman on
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That is really so good of you Kath, and hubby. I sent a reply saying that my wife can drive down there though if that is ok. Thank you again.
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Just added you as a friend on here so you can private message me + give me your phone no privately Greg
Greg Harman said:That is really so good of you Kath, and hubby. I sent a reply saying that my wife can drive down there though if that is ok. Thank you again.
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Thanks so much for your help Kath, you are an angel!
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Glad to have helped Greg and was nice to meet you. Hope you'll be able to sleep well and safe tonight :)
Greg Harman said:Thanks so much for your help Kath, you are an angel!
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Permalink Reply by Terry Vella on
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Greg, welcome and as Mary said hopefully you can give us some tips.
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Permalink Reply by David on
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HI there , I'm a relative newcomer to being a hosehead, Only 75 days under my mask so far. Sleeping quite well bvut have the occasional night when the mask leaks & I cant stop it so take it off as I need some sleep before going to work.
The clinic I am under didnt offer any support after giving me the machine apart from ring us if you need help. I would have thought that a phone call after a month or so wouldnt have gone amiss just see how youre getting on.
Thanks to another forum I aquired the sleepyhead software so I can see that I'm doing Ok and my AHI has dropped from 26 to 0.5.
Great forum. nice to have one thats UK based & experience of the NHS way of working not USA's with insurance companies.
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Permalink Reply by Roz B on
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Hi David
Glad o hear you are doing so well, but what a shame your clinic haven't offered support. I am 'very' new to all of this. i'm only on day 18, but after a couple of days i had a call from the suppliers (Philips Respironics), they seem to have a great support network in place…..free to call too! i also have a direct line through to my consultants secretary's and they have said if i need to come back earlier to see him thats fine. I am really grateful for this support knowing now there are many like yourself who don't seem to be getting the aftercare.
My machine has an SD card in it that Philips recall every so often and they read off the data which the consultant will also have access to on their system…… I just assumed thats how it worked for everyone but apparently not.
The machine i have also has a screen that i can roll through to check some data myself and i can see that my AHI is now down to 6….but it was originally 62!!!!
Kath and the other members on here are a great support
I wish you luck…
roz xx
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David, welcome, just on the leaks, what type of mask do you use? A couple of hints that you may already use, make sure the hose comes from above you head either using a hose lift or your bedhead, depending on which mask you use, use mask liners and depending where the leaks come from tighten or loosen the top or bottom straps. Let us know how you go.
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Permalink Reply by tony papworth on
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Hi im Tony thanks for the welcome I dont feel so on my own now.
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Permalink Reply by stephen smith on
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Hi Kath. Thank you for your nice welcome to hope2sleep guide. It looks like a really informative site. A little background on me. I have recently been diagnosed with severe sleep apnoea, apparently I stopped breathing 51 times a hour, I thought I was just lazy LOL.
I was given a CPAP machine 7 week ago and have just had my first medical update and I did'nt stop breathing once. This machine is like a magic wond. It took about 10 days to get used to keeping the mask on all night and I haven't looked back since. Its truly amazing. For all those people having trouble getting used to the mask, perservere is my advice. Its so worth it in the end. My girlfriend is no longer worried about my sleeping disorder/snoring/breathing and I have not fell asleep infront of the TV since I started with the CPAP.
My attitude to work has go better and my creative side is blossoming again as part of my week I design and make jewellery but more about that at a later time.
Well thats about it for now. Thank you for this great site and I will check in again.
Steve Smith
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