Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

I was diagnosed with OSA back in 2017 following having used the Hope 2 Sleep diagnostic home thing. (Thank you!). 

Since being diagnosed with OSA I've also been diagnosed with hypertension and am being treated for this with medication.

I was given a Philips Respironics RemStar Auto A Flex (System One). Since then I was lucky enough to have a couple of reviews before Covid set in. But since then I've not been seen, so that's around 4 years.

My machine isn't hooked up to Bluetooth or anything so the clinic won't be getting any of my readings so I've no idea whether the pressure on my machine is still appropriate for me. 

In addition, I don't feel at all comfortable about using a machine that may have cancerous implications due to foam particles. (I believe lawsuits are taking place in the US around this.)

In short, I don't know if I'm doing myself more harm using the machine than not.

I know that the NHS is under incredible pressure and that the pandemic has caused a backlog at sleep clinics, but I just don't know what to do for the best.

Is anyone else in the same boat? Does anyone have any advice?

Thank you.

Views: 180

Reply to This

Replies to This Discussion

I can’t offer any advice but I sympathise with the feeling of being abandoned.

I got given my current Resmed machine about 8 or 9 years ago by my clinic, and I think it’s overdue replacement, but I can’t get a reply from my clinic, and short of doorstopping them, I’m not sure what to do.

Hello

It seems you can check with Philips Respironics whether your machine is affected by the recall

https://www.philipssrcupdate.expertinquiry.com/?ulang=en

Hopefully it's not one of the problem machines, and at least you will know that your machine is not doing more harm than good.  You don't say how you've tried to get in touch with your sleep clinic, but if you have a sympathetic GP they might be able to help.

I've been using CPAP for 15+ years, and gone through 2 rounds of open heart surgery, and various medication changes.  In all that time, my pressure setting hasn't really changed.

All the best.

I'm sorry to hear that. I emailed Kath about this and she was very helpful. She advised me to get in touch with my sleep clinic and I have had a reply from them. I so hope that you get a response soon.

Ejog1 said:

I can’t offer any advice but I sympathise with the feeling of being abandoned.

I got given my current Resmed machine about 8 or 9 years ago by my clinic, and I think it’s overdue replacement, but I can’t get a reply from my clinic, and short of doorstopping them, I’m not sure what to do.

Yes, my machine is affected. Seems I slipped through the net. I'm now on the sleep clinic's radar again and am hopeful that this will be sorted soon. Thanks for your reply and stay well.

Jonathan said:

Hello

It seems you can check with Philips Respironics whether your machine is affected by the recall

https://www.philipssrcupdate.expertinquiry.com/?ulang=en

Hopefully it's not one of the problem machines, and at least you will know that your machine is not doing more harm than good.  You don't say how you've tried to get in touch with your sleep clinic, but if you have a sympathetic GP they might be able to help.

I've been using CPAP for 15+ years, and gone through 2 rounds of open heart surgery, and various medication changes.  In all that time, my pressure setting hasn't really changed.

All the best.

Thanks. 
Good news for me today, my clinic did finally reply to me and they’re giving me a new machine. 
The person I spoke to was super helpful.


The NHS clinics are great when you’re able to speak to them, but they seem to be completely overwhelmed. 
I think it’s inevitable as the number of treatments increase along with the number of people needing them.

Anyway, I’ve been lucky.

I hope you are just as lucky.


Jenny Wren said:

I'm sorry to hear that. I emailed Kath about this and she was very helpful. She advised me to get in touch with my sleep clinic and I have had a reply from them. I so hope that you get a response soon.

Ejog1 said:

I can’t offer any advice but I sympathise with the feeling of being abandoned.

I got given my current Resmed machine about 8 or 9 years ago by my clinic, and I think it’s overdue replacement, but I can’t get a reply from my clinic, and short of doorstopping them, I’m not sure what to do.

Good news. I've got lucky too! I can collect a new machine next week. It's been really helpful to 'speak' to people here and to Kath. It alerted me to the fact that I'd slipped through the net. The clinic was very apologetic and now all is well.

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

John posted a discussion

Short apneas - official definition

I'm reading the Resmed definition of apnea and hypopnia."Apnea" means "no breath." An apnea happens when you stop breathing for 10 seconds or longer during sleep."Hypopnea is a partial blockage of the airway (shallow breathing). During a hypopnea,…See More
Wednesday
Andy Griffiths is now a member of Hope2SleepGuide
May 20
Jonathan Lait is now a member of Hope2SleepGuide
May 16
Becky Murkin replied to Becky Murkin's discussion F20 AirFit small marking bridge of nose
"no such luck getting F40 as was not in stock yet at the hospital. Tried the F30 but unfortunately my nose is so small that even the smallest mask is not small enough and leeks. Now trying out the Philips Dreamwear full mask/ Hybrid mask.  So…"
May 16
Becky Murkin posted a discussion

mask "whiskers" marks

Hello lovely wise people,How do you prevent/ remove marks (indents) on your face left by mask for hours later. I call them my "whiskers". Still experimenting trying to loosen mask straps but keeping the seal.Using my Xylimelts at night for dry mouth…See More
May 16
Becky Murkin replied to Becky Murkin's discussion F20 AirFit small marking bridge of nose
"I have an appointment with my NHS Respiratory physio team on Friday and will plead my case for an F30 or F40. They said to me last week they did not have f40 in as yet however they are soon to see resmed rep any day now."
May 7
Judy posted a discussion

Headgear tips please

Hi, this is a rather trivial question, and apologies if it isn't appropriate for this forum, but I’m hoping someone might have some tips.I use the Resmed N20 mask. I also dye my white hair roots with a decent brand (as it would take several years to…See More
May 6
Judy updated their profile
May 6
Jonathan replied to Iain Noble's discussion Resmed Airfit F20 Woes
"Hi.  No first hand experience, but you can see reviews here, which are mixed: https://www.cpap.com/productpage/resmed-airfit-f40-full-face-cpap-mask I notice cpap.com still appear to be selling the Quattro FX.  I have imported stuff from…"
Apr 28
Iain Noble posted a discussion

Resmed Airfit F20 Woes

Dear FolksI have been using the Resmed Quattro FX mask ever since I was diagnosed over 7 years ago.…See More
Apr 28
Iain Noble replied to Becky Murkin's discussion F20 AirFit small marking bridge of nose
"Hi All I can say is I feel your pain! I got the F20 as a replacement this year and it is very uncomfortable. I have just ordered the new Resmed F40 which is very small and light and so far it has been a lot easier to use for a mouth breather that…"
Apr 28
Sarah Martin is now a member of Hope2SleepGuide
Apr 27
jjimjam updated their profile
Apr 17
Kath Hope replied to Becky Murkin's discussion noisy humidifier normal?
"It sounds like you're getting rainout issues (condensation) so here's an article to help with this. www.hope2sleep.co.uk/water-in-the-mask-hose-known-as-rainout"
Apr 16
Becky Murkin posted a discussion

noisy humidifier normal?

Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up  and I have to give up and switch off  for the night.See More
Apr 16
John posted a discussion

Dentists in Hull that know about Mewing ?

I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
Apr 9
Profile IconKaren Mcleod, Fiona Watson, Teresa Hobbs and 5 more joined Hope2SleepGuide
Apr 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
Mar 26
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Mar 24
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Mar 24

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service