The British Lung Foundation are carrying out the biggest ever survey of sleep apnoea sufferers in the UK. It asks people with OSA what they think about their condition and their treatment, and what they would like services to look like in the future for OSA patients. If you are a sufferer please take the time to contribute.
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Well I had to just put pen to paper about my care and treatment to try and give a bit of hope to anyone that is struggling. I started on CPAP about 7 months ago. At first I was given a normal CPAP machine and full face mask. Things did not go too well and I kept going back to my local sleep clinic. The sleep tech was really good and helpful, she did all she could to help me, she sent me home with an APAP to see what pressure my normal machine needed setting at.
I had it for 2 nights and these where the only 2 nights I had any sleep at all!!! During my time struggling I had to go off work sick, as it made me so down, and I could not think what I was doing . I asked about seeing if there was any chance getting an APAP, but this area does not prescribe APAP and seeing as I had only had used one for 2 nights I was unsure if it was all in the mind !!! I used my CPAP every night without fail for at least 4 hours but I was just feeling worse and worse.
I was due to go and see the specialist and I was at my wits end as I had been trying for about 20 weeks. I am a fighter but by this time I was in bits and unable to think about anything, so I came off my CPAP thinking that in 2 weeks’ time I was seeing the specialist and I would get some help!!!!! Little did I know what was going to happen!! I saw the so-called sleep consultant for this area he basically he told me that there was nothing he could do!!!!!
He said I was suffering from insomnia and needed to see a psychologist . Then he looked in down my throat said I could not have an operation to help me because I had too much fat, and because I had not used my machine for the last 2 weeks he wanted it back and asked if I had got it with me !! So the next day I went to hand it back in, all the time knowing that I needed something. I was totally gutted, it was like sending me home with a ticking time bomb!!!
For the next few weeks I just thought sod it, I will just not have any treatment. But Kath Hope from hope 2 sleep suggested going back to my GP and maybe seeing someone else. After talking to Roz, who had already been treated, shetold me about Mr Oko at Boston. He was 3 hours drive from where I live but it was well worth going to see him. He gave me an APAP machine due to my sleep test results, along with a Respironics Blue Gel mask. That was 5 weeks ago and since then I have used the APAP every night and I am sleeping for about 7 to 8 hours. As the days go on the more happier I am with it.
I have not felt like this for over 15 years. During this time I have had depression and was nearly sectioned. I also suffer with fibromyalgia, and the last few days these things have improved so much so that in time I will hopefully be able to come off my medication. So never give up, there is always someone out there that can help, you just have to find the right specialist. I got my appointment to see Mr Oko within a approx. a week and attended his clinic a few weeks later.
Before you go in to see Mr Oko you see a nurse who tells you every thing you need to know about sleep apnoea, which also puts you at ease. I cannot say how grateful I am to Mr Oko and his team for their help. If I had gone on with no treatment I dread to think what would have happened to me. I already feel that I’ve had at least 15 years of hell due to sleep apnoea. I want to say thank you to you all at Boston and thank Mr Oko for giving me a life again. The other 2 people i have to thank are Kath Hope from hope 2 sleep and Roz for getting me to see Mr Oko.
I am a 55 year old male from Boston in East Anglia, this is a brief synopsis of my condition Obstructive Sleep Apnoea, from diagnosis to treatment
I want to tell others about Obstructive Sleep Apnoea, for at least 35 years I was terrified to go to sleep, I would stay awake for days on end until I would go unconscious with sleep deprivation. I always had the most awful dream of drowning, so vivid! I had to fight to wake up ( and I mean fight ) I knew I was “dying”, I would wake with such exhaustion. I would do anything to stay awake, anything!!
I have other serious health problems and went to see my GP about 4 years ago, by chance I happened to tell him this story thinking he would laugh at me and send “me home with a flea in my ear”. With astonishment he said to me I think I know what is wrong, I am going to send you to see someone who I think can help you, this Gentleman’s Gentile MAN was Mr Oko, within a period of 10-15 minutes Mr Oko made me feel very welcome and at ease, his patience was endless, after the “examination” he sent me home with an attachment which I wore for 24 hours took it back and waited for my next appointment.
When I went for my next appointment, and may I say with some trepidation and fear, my fears were not only bourne out, they were far worse than I could take in. Mr Oko informed me that whilst I was asleep that at least every other minute I stopped breathing I was a “tongue” swallower, though he quickly reassured me straight away that he could help.
Mr Oko showed me how to use a C-Pap machine and that it would take a few weeks to get used to it. I remember thinking on my way home “silly bugger, who could ever think I could sleep with this on my face, it will never happen”!! But I thought well try it and see, initially I would try different face masks, I would pull them off when I dozed off, I would gag but through the next weeks and months I got nothing but 100% support off Mr. Oko and his team. Now those who use the C-Pap machine will realize how serious my condition is when I tell you that my settings are 18-20.
I am use to the machine and have been now for about three and a half years, we are really “quite good friends”:-) I brush my teeth, wash my hands and face, pull the duvet down, put my mask on and get into bed. I am usually asleep in about 60 seconds and get a good 10-12 hours sleep and my dreams when they happen are all Fantastic, ones I want. Now I sleep on clouds, amoungst the stars, in the heavens.
The Great news for those who are new to this condition is that it is NOT “quackery” it is medicine and IT WORKS 100%, all you have to do is, Do what Mr Oko asks and I will make you a promise DO IT AND YOU WILL BE AMAZED. We have a Great Doctor and Surgeon that the whole of medicine should be very proud of. Mr Oko has a fantastic team, through the reception team, his secretaries and not forgetting his nursing team oh and of course the tea machine.
Please, please if you are patient, thoughtful and kind remember, you will get 10 minutes if you need or half an hour if you need, no matter how grumpy you are or how lousy a day you may have had, “just smile a kindly hello” as this team will always be there for you as they have been to me! I respect each and everyone of them, YOU ALL CHANGED MY LIFE, THANK YOU ALL (“my living Angels”).
I have been using CPAP now for two weeks. I have the Optilife intranasal pillow mask and REMstar Auto A-Flex machine with Humidification. The machine was really easy to use and the mask fitted well. The mask is so easy to fit and adjust, as long as you choose the correct size pillow for your nostrils.
I set it all out and tried it, then left it for later that night. Went to bed, made sure I was fully relaxed, put the mask and machine on and fell off to sleep fairly quickly. The machine is very quiet. Rather than my husband being disturbed by my snoring he said it was too quiet!!
After 4 hours I woke up to go to the bathroom, got back into bed and put on my mask and machine, but had to try 4 or 5 times until I could get comfortable, but unfortunately nothing was helping. I just went into a panic and couldn’t work out how to breathe ‘through’ the machine’s pressure. It was well after 2am by this time so had to give in as my other half (OH) had to be in work before 5 that morning and I was disturbing him too much. My nose seemed really cold too so thought I something must be wrong!
During the following day I went over the instructions/settings etc. and discovered that one of the settings on the machine was set for a different nasal pillow, so altered that and the following night was much better….. apart from the pillow, that made my nose sore!
My first night was a Friday, so when Monday morning came and Philips Respironics (PR) helpline was open I thought I’d call then just to check I was doing things right…but before I phoned them they phoned me and put my mind at rest. They went through a few more settings etc. and I was really impressed with their care towards my condition.
After the scary first night I seemed to adapt to using the CPAP machine. I struggled a bit with the washing of the hose. PR said it only had to be done once a week, but having other health issues I needed some assistance with this. First off I didn’t have enough strength to remove the hose from the machine, so it wouldn’t be something I could do if I were on my own. I’m sure a healthy person would have no trouble. The daily washing of the mask cushion and the humidifier haven’t been a problem…apart from remembering to do them!
My OH has been occasionally watching over me whilst I was sleep and he could see on occasions where I started to snore and the pressure on the machine started to increase, stopping the snore in mid flow so to speak! So I know it’s doing its job there!
My first SD card has been sent off and I am awaiting the results. I’m hoping they will be saying they are as good as I think from reading the settings on the CPAP Machine. It is showing my AHI has come down to around 6 from 62 which was discovered at the initial sleep study. I am just waiting for their confirmation of the readings.
The only negative aspect of the past two weeks has been my own ‘positive mental attitude’…
Although I have been using the machine nightly and for around 7 hrs per night, I actual feel more tired now (I was one of those OSA sufferers who had no idea of the problem as I rarely felt that sleepy). I usually feel fatigued due to Fibromyalgia, but not the feeling of needing to sleep…more like my body is starved of rest, but I had thought after two weeks I may have woken up feeling a little brighter.
I know it’s still very early days and my general health doesn’t really help, but this week I gave in and went to see my GP….. he was actually as surprised at my sleep study results as I was! So he was very understanding as to my coping with it all.
As I had done with my appt. with Mr Oko I decided to type out all what i wanted to say to the GP, mainly about how I felt… unfortunately it went into 4 pages, so I had to just leave the copy there for him. He could see I wasn’t coping so well mentally and has given me some assistance with that.
Its still very early days. I’m not going to give in.
Adapting to using the machine was much easier than I thought it would be, but when you have so many other things going on -I think what you feel inside- it can take a little longer.
Next week I am off to have a Mandibular Advancement Device made up. This was something that had been recommended by Mr Oko for me to use alongside the CPAP Therapy as it would help bring my ‘recessed’ jaw forward a little giving me that extra help at night. Usually only the CPAP or the MAD would be used, but as it seems the bone structure of my jaw doesn’t really suit my breathing pattern!! So that will be another thing to update you on soon.
Although I am struggling coming to terms with all this, I aim to stay positive about using the machine, even if it takes a little extra help from friends and my GP to get grips with it all. It would be great to hear of other people’s experiences, esp. ones who see Mr Oko. I am sure that I am not alone.
I am very thankful for the help I have been given by Mr Oko and the time taken up to listen to me to help me overcome my fears. This is the first step in a huge hurdle for me and with your help I know i will get there. I hope my experience will help others too.
I havent actually started treatment as yet, but thats my own fault really….. I first went to see Mr Oko back in November 2011 and within no time he arranged a Visilab Sleep Study for me. I had envisaged my problem to just be ‘snoring’, so when i went back a couple of week’s later for the results of the Visilab test I was rather alarmed to find I did in fact have Severe Obstructive Sleep Apnoea!
Not expecting this and not really knowing that much about the CPAP treatment I was too scared to give it a go. I opted for a Mandibular Advancement Device to at least help the situation instead. So whilst waiting for this to be made up, I did plenty of research on the internet and over the Christmas period wrote out many questions.
Today I have been back to see Mr Oko saying that I have changed my mind and would like to give the treatment a try. He couldn’t have been more helpful. He never rushed me and never pressured me. He answered all my concerns and has sorted out a suitable mask for me to try….all I need to do now is wait for my machine to arrive.
Ok, I know I haven’t actually got any CPAP experience to share with everyone as yet, but my experience of nerves after the initial diagnosis will hopefully help others who may be feeling the same, come forward. I will update as my treatment continues as I would like to help and hopefully others will do the same and I can also gain from their experiences of the condition.
A very interesting post on Fierce Healthcare blog about the link between patient satisfaciton and profit in the US. This is also highly relevant to the way the NHS is going. When revalidation comes doctors will be judged on how happy their patients are, and patients will choose doctors with the best track record.
“Hospitals with high performance scores in patient care are more profitable, according to a new Press Ganey report. The top 25 percent of U.S. hospitals with the highest scores on the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) question about performance were, on average, the most profitable and had the highest clinical scores, suggesting that patient experience, coupled with clinical outcomes, can mean financial profitability for the institution.
“It is interesting to note that the only hospitals that showed a positive profit margin were those that were highly rated by their patients,” the report states. “…Although there is not a lot of difference in the clinical measures among the four groups of hospitals segmented on patient rating score, the top quarter of hospitals based on HCAHPS overall rating score also have the highest average clinical score. Taken together, these [results] suggest that excellence in patient experiences, clinical outcomes and financial profitability often occur together.”