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Kath Hope
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Kath Hope's Groups

Kath Hope's Discussions

Philips Respironics New Sleep Apnoea Diagnostic Service

If you snore and are tired, you could be suffering from sleep apnoea (see signs + symptoms on our website)…Continue

Started Apr 8, 2018

RAFFLE for out UK Supporters - ends Saturday 21st October 2017

We're extending our raffle to our United Kingdom Supporters *(sorry rules mean we can't share this out of…Continue

Started Oct 19, 2017

Driving with Sleep Apnoea costs unnecessary lives. Please share to raise awareness.
1 Reply

The father of Toby (the young man killed in a traffic accident) meets up with the driver responsible for his death, due to undiagnosed sleep apnoea.  Both these men live with their own horrific scars…Continue

Tags: tired, sleep-apnoea, DVLA, driving

Started this discussion. Last reply by Sleep2snore Feb 24, 2017.

Research into Snoring Children and those with Down's Syndrome

This is a fantastic opportunity for parents and carers of Children ages 3 to 4 years old (they have enough 2 year olds now) who Snore and those beautiful children with Down's Syndrome to take part in…Continue

Started Apr 1, 2016

 

Kath Hope's Page

Latest Activity

Kath Hope replied to Chris Vesey's discussion Follow up appointments
"Oh that's very sad to hear Chris.  In fact I seem to recall the name and if it's the same consultant he was ENT.  Good to hear you've got through to the clinic though."
Wednesday
Kath Hope replied to Chris Vesey's discussion Follow up appointments
"Normally a consultant's name would be on the diagnosis if you got it in letter form.  It's difficult at the moment to reach all the clinics, so try sending an email as those are usually picked up."
Tuesday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Stuart, I would also recommend you removing your comments  of your account on our charity's website as I've just looked at the 'login' link you've copied and if people click on that then they will have your email…"
Jun 2
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Stuart, you haven't been a member of this forum before until you joined yesterday and there are no previous posts from you on here due to you not existing on the forum so there was nothing available that could have been deleted.  The text…"
Jun 2
Kath Hope replied to Haneen Ghabra's discussion helpUARS
"Hi Haneen It's very difficult to pinpoint what happens when symptoms return.  If you can post a daily screenshot from an average night we could take a look for you.  Without seeing that, a few other things to consider is that the…"
Mar 22
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Sorry for the delayed welcome Sophie.  Great to hear things are going well with CPAP and some people do feel a little down at first.  If you use Facebook I'd highly recommend joining our Private Support Group which is far more active…"
Mar 14
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"Ah yes I clicked on your link Richard and seems that's an old link you found.  This is the latest link to their current sleep apnoea products https://www.philips.co.uk/healthcare/solutions/sleep-and-respiratory-care/dream-family …"
Mar 6
Kath Hope replied to Edam's discussion Flexifit 432
"It's a shame nothing can be done about your polyps and septum, which is no doubt the cause of your issues.  It too hate the Oracle, but there are a lot of people who use it very successfully - just not you or I lol."
Feb 25
Kath Hope replied to Edam's discussion Flexifit 432
"I honestly don't know Edam, as people usually ask us how to keep their mouths closed rather than open.  It sounds like you need an ENT referral due to severe nasal issues.  I had to have some surgery to breathe better in the masks."
Feb 23
Kath Hope replied to Edam's discussion Flexifit 432
"Ah right.  We only got the Forma yesterday.  I must say I prefer the 431 and 432 but of course we're all different."
Feb 22
Kath Hope replied to John Garbutt's discussion How long to get machine
"Yes I know John, and so often the missing jigsaw puzzle as to how we're feeling.  I was shocked when I got my own severe sleep apnoea diagnosis and CPAP really is a life saver.  Hope you don't have long to wait, and worth saying…"
Feb 22
Kath Hope replied to John Garbutt's discussion How long to get machine
"Welcome John and good to hear you've been diagnosed now and especially with your sleep apnoea being severe.  It really depends on each sleep clinic as to how long you'll have to wait for your CPAP - some give them out immediately,…"
Feb 22
Kath Hope replied to Edam's discussion Flexifit 432
"Hi Edam.  Good to hear the new mask is helping, and those F & P FlexiFit 431, 432 and Forma's are still a favourite for a lot of people due to the chin support.  (In fact we added the Forma to the charity's website yesterday…"
Feb 22
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"You're not on your own there Richard - lots of people are upset the Liquicell has lost it's CE mark and can no longer be sold in the UK.  I am still in touch with the manufacturer, begging for them to resolve it, and am waiting for…"
Feb 20
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"Hi Richard.  You may have seen it on their main website but they discontinued it a year or more ago, along with a few others.  Are you struggling with your existing mask?"
Feb 18
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Bob I just replied to your other post and have the answer here (that it's APAP you're on).  Nobody will have a go at you on here, about driving, as you've clearly said that you don't drive when tired which is…"
Feb 17

Profile Information

Treatment Being Used, if any?
BiPAP
If Machine Being Used, What Make or Model?
Respironics PR One APAP
Devilbiss Sleep cube APAP (Known as Intellipap in the USA)
Respironics ASV
Resmed VPAP
If Mask Being Used, What Type or Name?
Respironics Fit Life
Respironics Amara View
Sleepnet Hybrid
Amara Gel
Devilbiss D100
Fisher Paykel 432

(just need 2 more, than I'll have one for everyday of the week lol)

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Kath Hope's Blog

Medications Affecting Sleep

A number of drugs disrupt sleep, while others can cause daytime drowsiness. Your clinician may be able to suggest alternatives.

Medication

Used to treat

Examples

Possible effects on sleep/daytime…

Continue

Posted on October 16, 2014 at 22:27

CPAP TIPS

The following are my own tips in helping with my own treatment, and are not meant as a substitute for medical advice. However, I hope they prove useful. 



CPAP/APAP/BIPAP TOLERANCE PROBLEMS

A lot of people find it hard to tolerate their equipment at first, so it's a good idea to set it up during the day whilst relaxing, such as watching tv,…

Continue

Posted on October 25, 2011 at 20:00

Comment Wall (95 comments)

You need to be a member of Hope2SleepGuide to add comments!

Join Hope2SleepGuide

At 15:32 on November 2, 2017, YasminVaughan said…
Hi Kath I've being using a cpap machine for over 3 years the res meds one and full mask the last few weeks I have been getting bad headaches and dried sinuses making me feel horrid . I've got pressure on 7 a wooly cover for hose humidifier, I'm running out of ideas I did use a nasal spray at nite but was told to stop this I've joined today many thanks
At 15:22 on August 23, 2014, Bernadette Plunkett said…

Hi Kath, thanks for the welcome. Having just started therapy after a 2 year struggle to get diagnosed I have a bunch of questions but I'll try to see if they've been asked and answered on the forum first before raining them down on everyone. 

At 10:26 on March 12, 2014, Amelia Kennedy said…

Thanks Kath, I'll wait until Marion's able to reply. I don't want to disturb while she's poorly - it can wait for now.  Thanks once again for your help x

At 14:01 on March 10, 2014, Amelia Kennedy said…

Hi Kath, thanks for the comment about Marion and sorry to hear she's not well.  I've added her as a friend and am waiting for her to accept.  I'm not sure where I should copy/paste my comment to her though as it already appears to be there?  I'm not familiar with the forum set-up yet - that's my excuse anyway! x

At 0:12 on March 8, 2014, Sandra Gibbens said…

Thank you for adding me, already I've received so much support and information, and it's very much appreciated!

At 15:51 on March 6, 2014, Amelia Kennedy said…

Thanks Kath!

At 15:12 on March 6, 2014, Amelia Kennedy said…

Interesting ... thanks Kath, I'll take a look.  I've also been using mine for years - 15 in fact and get along with it fine now (after a load of teething problems!).  What I do hate is the weight and bulk of it.  I'm worrying about how me and my husband can get away for a few days in the summer as he's just had his driving licence revoked due to ill-health and I can't drive.  I guess I'll be pleading with Papworth again when I go in a couple of months to test me on other (smaller) machines - usually to no avail!

At 19:57 on February 6, 2014, June Ostiadel said…

Hi Kath, thanks again for the useful info. Firstly I did wonder if it's some natural oils coming out of my skin; I always wash before bed and use no creams. You mentioned the change in temperature during the night, well, my face often gets hot and I wondered if that could cause the mask to slip as well as a drop in temp.

I clean my mask every day, wiping with a little washing up liquid then wipe/rinse with clean wet cloth.

The hospital tried me on APAP but when the pressure rose it caused leaking so they change it for me.

I have a medium size mask (the hospital fitted it) and although I have a small face I have quite a big nose lol.

I visited the sleep clinic last June/July at St James Hospital in Leeds, when I was given the CPAP machine. I haven't been asked to go back yet; they only gave me one spare filter. How long would you expect a mask to last and how often should I change the filter?

NB I have just order some items from your website which may help me too; the cleansing wipes, the cream to help sore skin etc and the card (in case of emergency).

 

Thank you so much for your help, glad I found you

At 6:23 on February 6, 2014, June Ostiadel said…

I almost always get off get off to sleep with no problem at all; my mask appears to fit quite well, however, after maybe two or three hours I wake up; mask leaking usually from around top of nose. Trouble is when I awake I then want the loo, anyway, I have realised that if I wipe my face and mask with a damp cloth (I have this at the side of bed) after I've done faffing, I can sometimes go back to sleep for another hour or so, but, sometimes at this time I just cannot get the mask to fit without it leaking; then I give up.

At 17:48 on February 5, 2014, June Ostiadel said…

Thank you Kath it's nice to be here.  I was diagnosed with Sleep Apnea about 5 months and have just about mastered the equipment, however, on some occasions I struggle and unfortunately ,I have to sleep without using the machine all night. I found this site when someone on Health Unlocked recommended it

June

 

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Latest Activity

Mark Cuthbert is now a member of Hope2SleepGuide
Thursday
Kath Hope replied to Chris Vesey's discussion Follow up appointments
"Oh that's very sad to hear Chris.  In fact I seem to recall the name and if it's the same consultant he was ENT.  Good to hear you've got through to the clinic though."
Wednesday
Chris Vesey replied to Chris Vesey's discussion Follow up appointments
"Hi, Managed to get through to the hospital on the phone, it seems that my original consultant a mr. Haranhi has died from coronavirus recently which is a great shame as he was well thought of. Reviews are now carried out over the phone when they can…"
Wednesday
Kath Hope replied to Chris Vesey's discussion Follow up appointments
"Normally a consultant's name would be on the diagnosis if you got it in letter form.  It's difficult at the moment to reach all the clinics, so try sending an email as those are usually picked up."
Tuesday
Chris Vesey posted a discussion

Follow up appointments

Hi,I have just realised I have never had any follow up appointments since being given my resmed autosense 10 in January 2018. Dvla wants to know my consultant but I don't  have one. Phoned hospital but they are blank. Should I be having one?Chris See More
Tuesday
Robert walker is now a member of Hope2SleepGuide
Monday
Owen Davies joined The SleepGuide Crew's group
Jun 28
Stuart Adrian Gillespie posted a discussion

I'm so worried about my Health condition and putting on weight.

 Hi everyone, I have been hit by Universal Credit cuts and problems whilst in lockdown,  I also can't go into shops as I'm still shielding. I'm not sure if my sleep apnea is working or not as I only seem to get my machine checked out once a year. I…See More
Jun 17
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Stuart.  Reading what you say, you had sleep apnoea, you are being treated, and therefore you are now symptom-free.  Perhaps your social worker doesn't know what sleep apnoea is, and is simply covering their own backside.  Do…"
Jun 10
Stuart Adrian Gillespie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"They have now suggested my wife should give up her well paid job and  becomes sole  carer for my children. With many jobs becoming scarce, I don't consider this to be an option. Am I being unreasonable?"
Jun 10
Stuart Adrian Gillespie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"At the moment I have a problem with Social Services, because they believe my sleep apnea effects my ability to care for my two children. (Who are aged 3 and 4) I have been using a Dream Ware Mask, and a machine that records my sleeping on an SD…"
Jun 10
Stuart Adrian Gillespie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"At the moment I have a problem with Social Services, because they believe my sleep apnea effects my ability to care for my two children. (Who are aged 3 and 4) I have been using a Dream Ware Mask, and a machine that records my sleeping on an SD…"
Jun 10
Bernice Rios is now a member of Hope2SleepGuide
Jun 4
Stuart Adrian Gillespie updated their profile
Jun 3
Stuart Adrian Gillespie posted a photo
Jun 3
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Stuart, I would also recommend you removing your comments  of your account on our charity's website as I've just looked at the 'login' link you've copied and if people click on that then they will have your email…"
Jun 2
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Stuart, you haven't been a member of this forum before until you joined yesterday and there are no previous posts from you on here due to you not existing on the forum so there was nothing available that could have been deleted.  The text…"
Jun 2
Stuart Adrian Gillespie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi All This is the second time Ive joined.... See below Apr 13, 2017, 7:08 PM   I had to join again because my posts were Deleted. I hope they will all be put back now? I posted an item that I thought was relevant to all. Please look and…"
Jun 2
Profile IconOwen Davies and Stuart Adrian Gillespie joined Hope2SleepGuide
Jun 1
James McCartney is now a member of Hope2SleepGuide
Apr 18

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