Information please (Success Story)

[Tubadale]

Hi, I have just been diagnosed with SA. I am now waiting for a appointment with the sleep nurse at Hope hospital Salford. Anybody know how long this will take ?
I am disabled and upon contacting the DVLA have given up my license, although this is only temporary. Problem is because I have a disability this has now left me more or less house bound.
Is it worth contacting the sleep nurse to try and move things along ?
Would I be better off buying my own machine, if so what are the best ones to buy ?
My sleep test showed I wake up 109 times per hour, I was told this is very high, could this help my case to be seen sooner ?

Any thoughts
Thanks Dale

[James @ Intus]

Hi Dale,

Welcome to the forums.

How long it takes is anyone's guess. You may have heard of the term "NHS Postcode Lottery", which it unfortunately still is to a large degree. Chasing them along, outlining your specific needs may indeed help so that's worth doing. See if you can get an ETA on when you can get treated.

Note that I sell CPAP equipment to people like you every day (disclaimer) but in all honesty, you would ideally be supplied a modern machine by the NHS. Or at least a bunch of masks. But if their equipment is second-hand stuff from the eighties, then you may indeed want to consider owning your own equipment. After you find out when and exactly what treatment ideas they have for you, you can then look at private alternatives. At this stage, I'd say it may be a tad early to go into it too deep as who knows, they may have a shiny new one ready for you, for free.

109 an hour is extremely high so yes, that, your disability (and perhaps you can reiterate strongly how crap this is making you feel) should be enough to propel you to pole position on the waiting lists, if there is one.

So my advice would be to hammer them on the phone, tell them how rough this is for you, that you need treatment asap. Should they only have bad news, then you can always give me a ring or shop around!

[Tubadale]

Thanks for that James. I left a message on the nurses voice mail at Hope hospital for him to contact me re my appointment.
He rang me today and explained there is a 2 / 3 months waiting list to see him. After talking to him and putting my "case" he offered to contact me if he got a cancellation.
Put the phone down 5 mins later he phoned me back, he could see me this morning at 11:00. So after getting my wife to come out of work, pick me up and then break the land speed record on the M60 I was sorted this morning.
I telephoned the DVLA this afternoon, they have said if my Doctor says I am OK to drive I can drive now, medical questionnaire is in the post.
I have been supplied with a new CPAP machine and a nose mask, lets hope this all works out.
So all seems to have worked better than I though possible, Hope hospital seem to have been fantastic up to now, I hope it carries on this way.
I have an appointment to see my GP on Monday, so I'm not going to drive until I have seen him. Gives me some time to maybe be seeing some improvement in myself.

[James @ Intus]

You see, miracles do exist

Great about the land speed record too

Let us kow how your first experiences with the CPAP are. When you have it unboxed, we'd be interested to hear what exactly you got.

Well done on getting what you need!

[Tubadale]

Just a quick update. Used CPAP last night for first time. Pleased to say no problems, didn't have any leaks and slept right through except for a drink wake up.
I can't quite believe I got such a good nights sleep first time, and my wife said it was strangely quiet through the night (no snoring !).
I didn't seem to have any leaks and the mask was Ok, not as uncomfortable as I thought it might be.
I do seem to have had a fantastic start, lets hope it continues.
I have tried to have a positive attitude towards this treatment. I know that is not easy but this could be for life so I feel its the only way.
This morning I feel very awake, by this time 8:30am I have normally fallen asleep in the chair (I get up at 7am) I also feel strangely relaxed. This is just from the first night !
I know it's early days, but thing are going in the right direction, Lets hope that continues.

Dale

[James @ Intus]

Fantastic.

A wise man once said:

You see, miracles do exist

24 hours ago you were wondering whether it was going to take maybe 3 months and look at you now, passed the first night with flying colours.

Some people might be thinking you are a PR person for the NHS spreading bogus propaganda

In all seriousness, that's great to hear Dale.

[Richard]

That's great news, Dale.

Using the c-pap will transform your life: no more waking-up with a thumping headaches, no more feeling ready for bed by lunch-time, and lots more energy.

Best of luck

Richard

[Tubadale]

Well it's been almost a week, no problems at all using CPAP in fact i've slept like a baby.

My wife has been woken up a few times though, not by the CPAP machine, not by the exhaust, not even by the blue light you get of the buttons on to of the machine. She has found the bedroom to be to quiet !! It has woken her because I'm not snoring for England.

I got some more good news this morning, my GP has Oked me to drive, just checked with DVLA and they have said that's fine I can now drive again.

I have in many ways surprised myself how I have got on with using this equipment, although the benefits are unbelievable. I am awake, loads more energy, and I feel so much better, and that's after only 6nights use.

[James @ Intus]

Hey Tubadale, after you initial great progress, how's things for you now?

[Tubadale]

James, I'm pleased to say I have had no problems at all. I get a great nights sleep every night.

I went to see the sleep nurse this week for a check up.
When I was first diagnosed I was waking up 109 times every 60 seconds. My card read out now shows the worst night I woke 16 times within 60 secs. A great improvement.

I can now watch a film from start to finish, and my wife has someone to talk to in the evening (don't know if she thinks that's a good or bad thing )

So all seems to be going fine, I even had no problems when we went on holiday to Mexico.

Dale

[James @ Intus]

Great success story, glad it's working well for you.

Judging by the forum threads here, some may be mistaken CPAP is just a string of problems but not many people would join a discussion forum just for reporting beautiful experiences. It's the nature of the beast that people only show up with complaints and problems, and that's absolutely fine of course but could make CPAP look more of a hassle than it is to the uninitiated. So I'm glad to hear you can restore the balance a bit

[Tubadale]

I couldn't agree more, most of the treads you read on medical related forums are usually horror stories, or people complaining about how bad the treatment is to tolerate.
I'm also a diabetic and have used forums to get advice etc before, so I am a bit wise to the way most post work.
I am really pleased with the way things have worked out for me, and hope it can help others who need to use a CP machine.
I think you need to approach this in a positive way, you need to use a CP machine, you have 2 options. Work with it, or fight against it.
I know it's not easy, and I am not in any way trying to be patronizing to anyone who is having problems getting on with your equipment. Stick with it and hopefully things will work out.