"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…"
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Elizabeth Howard
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Elizabeth Howard's Discussions
BREATHING PROBLEMS WITH VENTILATOR
6 Replies
I use a nippy 3+ ventilator as I have scoliosis. I also use oxygen, 1 litre. I am 48 years old. A few weeks ago I started with a cold, was given nothing for it by another Dr in a different surgery, I…Continue
Started this discussion. Last reply by Elizabeth Howard Dec 14, 2014.
NIPPY AND OXYGEN
1 Reply
Not sure if this came out on my original post, as no record of it. I am 45 years old and have scoliosis with respiratory failure. I have had 3 operations for scoliosis, I was told when I was very…Continue
Started this discussion. Last reply by Kath Hope Nov 28, 2011.
Elizabeth Howard's Page
Profile Information
- Treatment Being Used, if any?
- Other
- If Machine Being Used, What Make or Model?
- Nippy ventilator and oxygen
- If Mask Being Used, What Type or Name?
- Full face mask for nippy 3+ and nasal cranula for oxygen
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Latest Activity
"Hi.
I didn't use PatientsKnowBest (ironic name), but I have an email address for my heart department for sending in ECGs. I was just saying that they may be able to review a PDF when then cannot review a data file from your O2 ring.
I am…"
"Hi Jonathan, did you do that through PatientKnowsBest?"
"On an unrelated topic, I've been able to send ECGs by PDF to my heart clinic.
On the subject of Resmed and apnoeas, take a look at https://youtu.be/ufOOAfyzZso?si=Tpdl4EEiCQBZR4iD&t=276
Your machine may be under-reporting.
Good…"
Wellu O2 Ring - is it accurate enough for the medics?
Moving some furniture my long lost O2 ring continuous oxygen saturation monitor turned up. So I've been wearing it and it tells me I have loads of saturation drops during the night even though my Airsense 10 says I have very few apneas.So I get two…See More
"Hi,
Just thought I'd give an update. So, I had my appointment with the NHS sleep clinic which was much quicker than I anticipated and I've now had the overnight sleep study. My AHI is now 6, down from over 30, so I'm…"
"Hi Sally from what I read the airsense doesn't suffer the same foam degredation issues as the infamous Phillips machine.I can conceive it's possible that microplastics may be shed from the flexible main tube.What worries me more about the…"
"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
"Hi Jonathan,
Thanks again for the info. My cpap *should* be monitored by the NHS though I haven’t had any contact from them since pre-covid. I checked out the link you gave to access extra data and I think that’s going to be…"
"Hi
I have the ResMed Airsense 10 Autoset (APAP). It's monitored remotely by my NHS sleep clinic and I believe they can make changes to the settings. I don't know whether they are notified if I make changes, nor whether they…"
"Hi Jonathan,
Thanks for the reply. I'd say that I'm fairly technical. I have the ResMed Airsense 10 Elite machine. I've discovered that I can upload data wirelessly from my machine and having lowered the pressure by…"
"Hi
You don't say how technical you are, or what sort of machine you use. However https://www.sleephq.com/ has software which allows you to upload data from compatible machines, and analyse your sleep "score", including a…"
air bubbles after weight loss
Hi,I've been on Mounjaro for about 3 months now, not primarily for weight loss, but I have lost weight around my face and neck. I've noticed that I am increasingly getting air bubbles in my mouth which of course is disturbing my sleep (and my…See More
Micro plastics risks
I was reading an article in the I newspaper today written by a journalist who had her blood tested for micro plastics and was shocked by the results.…See More
job with the charity
Was wondering if there might be a job for me with Hope2Sleep?(I also just asked this of a group by mistake)See More
For Sale - Ventura Full Total Face CPAP Mask
I’m selling an Ventura Full Total Face CPAP Mask Large and two spare liners. I bought it new from the Hope2Sleep shop, but it is not suitable for me. Only used for about two weeks so I have washed it thoroughly. Because of this, it is very much…See More
"I put in a claim for PIP which was denied and now I am over 66 and on pension I tried for AA. Denied again.I have other health conditions ( Diverticular disease and Bile Acid Malabsorbtion ) which I consider hard to live with and they refused all of…"
"No personal experience, but CPAP.com review of AirMini
The AirMini runs at about 30 decibels, which is about the same sound level as a whispered conversation. For comparison, full-sized CPAPs tend to run around 26-28 decibels. Due to their…"
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One last though Elizabeth . I have no caffine after 5pm (unbless socializing). Instead I drink camomile tea. This approach has definately helped me.
I really am going now !
Phil
HI Last comment and I will go away. Honest.
My consultant at Papworth says that sleep A is rarely an entity is its own right i.e. there are often conditions running along side it.
I have read dozens of books. The best is by my consultan Dr Schneerson, which you can get from the British Library. A heavy going medical book, most of which I do not understand, but the most informative by far. He has three hundred publications.
Phil Earl
Hi again
Also, I bought a belt with inflatable bags in the back to stop me sleeping on my back when I am somewhere where I cannot use CPAP. I also bought a sleep apnea pillow from Resmed to help reduce air leaks and a tempur pillow to keep my neck aligned.
I will leave you in peace now. The last thing you want is these sort of emails on a Sunday, but I know how confusing it can all be.
Phil
Hi Elizabeth.
I have a Remsatar M series contant pressure and from what I have read would not want a non constant pressure machine. I have tried three Resmed masks and prefer the full face mask to nasal mask as it has less side effects to deal with. My top tips. Buy a CMF50, so you can change diet/ lifestile/ pressure settings to see what gives you the best results. Print your results off for comparisons, noting weight, if stressed, what you eat and when etc. Buy a hose lift from Kath. Makes a massive difference in trying to sleep and reduces some air leaks as the hose does not drag over the bed. Hospital checks are to far apart. Use 'OUCH' sainsbury's microporous tape if your mask rubs your nose. Better than anything else I have tried, including special hospital plasters and comes off easily. The CPAP spray, wipes and face cream hope to sleep sell work well. Go to bed and get up same times. Buy a daylight alarm clock.
Hope this helps. Anything else you want to know please ask.
Good luck
Phil
Suffolk
Hi Elizabeth,
I actualy live in Gosfield which is near suffolk.
Where do you live in suffolk?
Regards Joe
Hi Elizabeth and nice that you've joined us on here, especially as you use the Nippy Ventilator, as hopefully you'll be a good source of help to others on the same treatment. Hope you'll find the forum to be beneficial for yourself too :)
Best Wishes
Kath