Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Kath Hope's Comments

Comment Wall (96 comments)

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

Join Hope2SleepGuide

At 15:28 on February 12, 2021, Sue Abson said…

Hi Kath - I've made my profile private to friends only, so that Sarah's number shouldn't now be public.  But how do you delete a comment?  I can't see a way of deleting my own? 

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

 

.

At 21:41 on October 22, 2013, JOJO said…

Thanks fro the welcome kath i can see this site is going to be veryhelpful for me

At 19:08 on October 13, 2013, debbi-jayne challenger said…

Thank you so very much for reply especially on a Sunday when Im suree you must have better things to do!! I managed in between the torrential rain, to get in an hours walk with the dogs and theyve had a good grooming session today!!

 

I am so very sorry to hear of your losing your mum at such a young age.  So terribly sad and I do feel for you but what a testament you are to her memory in what you are doing here!  So many people don't know about this illness and lots of people just laugh at me when I tell them as they don't undertsnad how dangerous it can be. 

 

I have been sitting here in floods of tears reading through all of this as I feel at last, as though maybe someone now can help?  It's true, it is a very isolating experience and I have felt  so alone in trying to cope with it and so ill all the time as nothing seems to have worked over the past 3 years.  I so need to feel more positive and energised and maybe with your help I will.

 

Thank you so much. xxxx

At 12:18 on October 13, 2013, debbi-jayne challenger said…

Hi Kath. Thank you for your message.  Yes I am the proud owner of 4 collies and a GSD x collie plus I sponsor a deaf and blind collie too.  Love my dogs and have owned and worked collies in agility for 30 years!!

 

I was diagnosed with OSA 3 years ago.  I tried the CPAP machine for over a year but found it wasn't helping and was in fact so uncomfortable and waking me up more than I was waking up without it.  I am under Papworth Hospital but apart from getting me to try several different masks, none of which were any better (I sleep on my side and breathe through my mouth) they have been pretty unsympathtic to be honest!  A year ago a nurse suggested I try a mandibular device and I tried this for a year.  In principle I like the idea as the CPAP is just so awful for me.  However I have been becoming more and more ill in that it really wasn't doing its job and half the time was falling out of my mouth and spending most of the night under my arm!!!!  Papworth discharged me in January as I wasn't using my CPAP anymore and they said I was wasting their time!!

 

3 weeks ago I went back to the CPAP and have asked my doctor to refer me back to Papworth and I have tried to be a lot more patient and to change my mindset on this horrid thing but it leaks all the time, is noisy and wakes me up every hour, and, despite having the humidifier, I have such a dry cracked mouth all the time and my nose is so pinched and I wake up and go to work with great bug "tram lines" down my face - not very attractive!  Plus I feel so blimin awful.  Am normally a very upbeat person, have a lot of hobbies but nowadays I seem to feel so down, have no concentration and feel exhausted permanantly and fell asleep driving once!

 

I am hoping I may find out more inforomation and get some help as I am at the end of my tether now.

 

Sorry for long post - just fed up with this!!

At 17:15 on October 4, 2013, Lee said…
No sorry I'm using cpap at the moment but not getting on very well
I'm being fitted with a dental devise in November for mandular mouth guard in the hope that this will work very well just had enough now so tired
At 6:23 on July 30, 2013, Carl Wilkins said…
Hi Kath
Thxs for your message , glad to be on board , so sad that you lost your mom at such an early age but one thing you can be sure of Kath is she will be very proud of what you have achieved with your website helping & assisting others as they cope with the problems encountered with sleep apnoea, keep up the good work & well done
At 19:55 on May 6, 2013, Philip Dallinger said…

Hi Kath

They say a little knowledge is dangerous just like me looking at all those wiggley lines!!

Phil 

At 10:30 on March 19, 2013, ghrame corbett said…

kath im sorry but i had computer problems with emails yesterday and could not get on site. iregistered as a new member to get back on.i think i finally sorted the problem. i hope you are well

At 13:32 on March 9, 2013, Sheila Skelhorn said…
The only pain is the filters need changing evert 18-21 days. The hospital are complaint as they send out only 3 at a time and want you to make them last 3 months. I'd I don't change them every 18-21 days the alarm keep going off much to our annoyance
At 9:31 on March 8, 2013, Sheila Skelhorn said…
Thank you for your kind comments my boy has aspergers and other disabilities so I speak on his behalf. He has mild to moderate communication problems but overall a happy pleasent young man .anyone know if there is anything I could use to clean the insides of the hose, can't use water as it doesn't dry

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

Drew Siegert is now a member of Hope2SleepGuide
Monday
Linda updated their profile
Sunday
Profile IconPaula Tanner and Steve Ward joined Hope2SleepGuide
Saturday
Janet Martin is now a member of Hope2SleepGuide
Apr 4
Lynda smith is now a member of Hope2SleepGuide
Mar 31
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Booksy This is a great 1st night's result regarding already feeling the benefits of CPAP.   It's absolutely normal to get a few teething problems at first but if you feel the air pressure is still too low contact your sleep…"
Mar 23
Sleep2snore replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
Mar 23
Sleep2snore replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Either they have not set your minimum pressure and the machine is slowly finding the level you require, or they have not set up a minimum pressure. I don't know how or if they set your machine up, but my mate got one and under Covid rules they…"
Mar 23
Booksy replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Everyone, I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy…"
Mar 23
Mr Matt Boadle is now a member of Hope2SleepGuide
Mar 21
Judith Wilson replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Glad to hear you are settling into APAP machine Damien...it did sound preferable to CPAP ones.The more I use my oximeter as I wake up during sleep I think I’m discovering my problem with low oxygen seems to be only in the morning as I snooze,…"
Mar 13
Damien replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Judith, sorry to hear you are struggling. I’ve been using my apap since Tuesday and noticed some small improvements but i think i’ll need to up the pressure to get AHI lower as although its much lower than my test result i’m…"
Mar 13
Judith Wilson replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Thank you Kath, yes I suspected Lung/Sleep folks had been commandeered’ to covid, but this seems to include appointment staff too! Although I’d love a remedy ( no matter how partial) to my existing conditions I am a bit fearful of the…"
Mar 10
Kath Hope replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Judith Sorry to hear there's such a long waiting list in your area.  It's been made worse because a lot of staff from the sleep clinics are respiratory specialists and these are the very professionals who were needed in ICU and on…"
Mar 10
Kath Hope replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Sorry I missed this question Damien but I've spoken to you since at the charity and know you should have the machine by now.  Hope things are going well."
Mar 10
Judith Wilson replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"I am rather like Damien. Got a referral to Lung/Sleep consultant but no appointments in nhs for at least 10 months. Ordered the charities two night monitoring kit to test for sleep apnoea, but will this count as diagnosis to get prescription if I…"
Mar 10
Judith Wilson is now a member of Hope2SleepGuide
Mar 10
Damien replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Kathy, i bit the bullet the other day and just ordered the apap. What is the usual waiting time for order and delivery completion in mainland UK? thanks  damien "
Mar 4
Kath Hope replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Bless you and do understand, now you've got a diagnosis with 'hope' in sight for an end, or at least vast improvements, to your symptoms.  We got some more machines ordered today, although only one APAP without a humifidier...the…"
Mar 2
Damien replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Kath, I’m just holding off to see final sight of my insurance docs and to speak to them (on the very unlikely chance they can do anything) but it does look like it will be excluded so will likely buy the apap this week and then see ENT…"
Mar 2

© 2021   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service