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PLEASE USE CPAP EVERYTIME YOU SLEEP
This is a very sad day, as I have learnt that a lovely young 36 year old fellow Sleep Apnoea Sufferer who I used to speak regularly with on Twitter passed away in the early hours of this morning. She was suffering from a stuffy nose and finding CPAP hard to use, so unfortunately left it off last night. Her devastated fiance has asked that I pass on this news to ensure existing sufferers keep safe and use their CPAP every night, and he wants this news passing on to help raise awareness of sleep apnoea to the undiagnosed.
Lisa was a lovely lady and did everything in her own power to raise sleep apnoea awareness. She did the same for arthritis, as her own 8 year old daughter was born with JIA (Junior Idiopathic Arthritis).
Rest In Peace Lisa x
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Replies to This Discussion
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Permalink Reply by Lesley Richardson on
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How terribly sad. Please pass on my condolences. I always find it hard wearing the mask when I have a cold & I suffer from allergic rhinitis as well but it's usually worse without it, so I persevere.
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Permalink Reply by martin mucznik on
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our thoughts are with her family and friends at this very sad time.muz
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Permalink Reply by Rosemary Kemp on
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I think I've told everyone before but my cpap clinician told me to try a few nights without the machine to see if I was better! I was to do this when I knew I didn't need to drive anywhere! I did as I was told and had such a bad night that I decided not to try that again! I know that when the OSA is as bad as mine that it is extremely unlikely that I will suddenly be "better" although I can see enormous improvements since losing the eight stone.
It makes one wonder how the specialists continue to give us so much poor advice when we are so vulnerable and depending on them for help. Maybe we are all on a learning curve? Let's hope thst this death willl at least have a positive outcome for others. We will now understand the need to wear the mask every time we sleep! That won't be much consolation for Lisa's family now though will it?
Rosemary
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Permalink Reply by paula jones on
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Awwww im mega shocked!! i feel really upset,and it makes u realise how dangerous sleep apnea is...God be with her Family right now!!
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A sad loss and another testament to the importance of having sleep apnoea treated. I've managed to use my machine every night for 13 months now, despite the discomfort of using it when bunged up with a cold. It's cost me money as well having bought three full face masks before finding one I can bear to use (Quattro FX, still not happy...) on the nights when breathing through the nose is near impossible.
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I had an appointment at the hospital with the OSA nurse this afternoon. I told her about Lisa and was told 'she must have had some other underlying medical problem, OSA is not life threatening'. She said that is why we are told it is fine not to use our cpap for a day or two. She also said that if our machines breakdown when the department is closed it is also fine to not use cpap!!!
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Permalink Reply by Kath Hope on
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Thanks for telling us this Faith....more evidence that we need to look after ourselves very well!
'OSA is not Life Threatening' hmm.. stopping breathing and not starting again is life threatening in my understanding. I for one would never go without my CPAP no matter how many medics tell me I'm ok to. If anything ever happened that meant I couldn't use it for a night, I would ensure that my nasal airways were clear, I slept on my side, had drunk no alcohol and anything else I could think of.
'Lisa must have had another underlying condition' .... as far as we know at this stage she didn't! Her fiance was told it was probably because she didn't have her CPAP on that night due to her stuffy nose. However, when/if I hear the results of the post mortem I'll certainly add them to this post. Let's not also forget the fact that undiagnosed sleep apnoea (ie sleeping without a CPAP or other form of treatment) can actually cause other life-threatening conditions. Even if Lisa was found to have another underlying condition, then maybe CPAP could have saved her!
I think it is totally wrong for anyone in the medical profession to say that it is okay to go a few nights without CPAP when there is no medical proof of this!
Finally, I wish to clarify (in my humble knowledge) that I am sure 99.9% of the time that people sleeping without a CPAP machine during an emergency would be ok as our brains/bodies would look after us and we would not die. Thankfully, we on this forum have all been looked after up to now by the clever mechanics of our bodies, but I will not be taking any chances!
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My opinion - some will disagree with me over this - I think we need to be very careful to not start to panic if we can't use our machine for one night. I am sure that there is some risk of we don't wear our cpap for a night but it isn't necessarily any more of a risk than many other things we embark upon in life. For example, how many of us drink too much alcohol before sleep sometimes? This is also dangerous for some people and on some occasions. Some people fall asleep occasionally on the sofa. Some people fall asleep on a train journey or if they are a passenger in a car. They don't necessarily die. Some people have died after a night when they have used their cpap perfectly.
We don't know the details of Lisa's condition and there could well have been other issues. It isn't good to panic over with this stuff. Most of us don't have a spare machine in case our's breaks down. I think I have already said that I have not been impressed to be advised to try the odd night withouth the cpap to see how I will fare but then again, there is always the odd occasion when a machine may break down or a hose leak. One night there was a break in my hose and the machine was useless that night. I told everyone that a couple of nights ago I forgot to switch it on at the mains! I'm a twit considering I have been using cpap for three years now and should have known better!
The optimum is to try to use the cpap every night and we all know that for the very odd occasion there has to be some risk but it may be an acceptable risk?
That is my view anyway and I think that you should trust your hospital over this. The stress you will suffer if you live in fear of your machine breaking down for example will also increase your health risks! Unfortunately, there are many people out there for whom one night off the cpap can grow and become many nights off the cpap. Don't take unnecessary risks. Non compliancy is a widespread problem. People still fall asleep at the wheel and people still die unnecessarily.
I hope that my view over all of this helps you to form your own. One of the problems over Lisa's death is that she was a "friend". Things are rarely simple and black and white. We can but do our best and we are a heck of lot better off now that we have discovered cpap.
By the way, OSA is life threatening. If you read the posters on display in your hospital, it is written on them. The increased risks of stroke and heart attack are huge as well as accidents in the car etc but "life threatening" changes when we are being treated and comply.
Rosemary
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hi all,when my machine went wrong [because i blew the 12v] the hospital in shrewsbury said well you should be ok i think? not very good advice i think.also its not just the stopping of breathing your body goes into fight for life and then you have a heart attack.when we were away my wife did not go to sleep because my appneo was so bad she had to keep waking me as i stopped breathing,she caught up catching fourty winks in the daytime,she has been looking after me for years thank goodness,dont know what i would do without her and my cpap.muz
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The risk of heart attacks and strokes is high of course when we don't use cpap and need it but the body does have this clever way of getting the breathing back. Like Kath said in a previous entry, when we stop breathing, the body makes us wake up with a start and a loud snore - almost every time anyway! The day that it doesn't is where the problem lies; that alongside the other conditions that OSA can cause and the severe exhaustion. We can survive for a long time without realising we stop breathing like this.
The hospitals shouldn't be encouraging us to believe that it is ok to have "nights off" because a lot is at stake. Not just the risks of heart attacks and stroke but the other associated conditions when we get it into our minds that we can take or leave the treatment!
Your wife needs her sleep too doesn't she? You are lucky to have someone with you to keep an ear open but there must be people without "other halves" or whose other half doesn't listen out or who sleeps so soundly that he / she doesn't realise that we might be in trouble! However wonderful "the other half" is, this person will also need to fall asleep eventually! Good job our bodies have looked after us prior to getting the cpap machines!
Of course we should use the equipment as often as humanly possible but the panic sets in when someone we knows dies. We need to keep perspective, I'm sure you agree with me that the inventor of the cpap machine is an amazing person (whoever he / she is). We are very fortunate!
Rosemary
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Rosemary, you mentioned the amazing man behind introducing CPAP. He's actually an Australian and here's a link to a "Salute to Colin Sullivan" with more information.
Here's a picture of the Great Man Himself:-
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Permalink Reply by Terry Vella on
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Kath, Those Aussie seem pretty smart to me considering we were originally convicts from the old dart. Have a Merry Christmas and a sleepfull new year to all.
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