Just diagnosed - waiting for cpap

[AllanGF]

Hi all,

New here - just been diagnosed with OSA. Actually had no idea about this condition prior to being diagnosed, I've been going through various tests for years to try to figure out why I felt so awful all the time until a new GP thought to refer me on for this.

Was given all the diagnostic equipment home with me, returned it the next day, and now a few weeks later I've now had a letter through telling me I have severe OSA. The stats on the letter are AHI of 77.1 and lowest recorded blood oxygen of 73%. Obviously having never heard of the condition I have no idea what these figures mean!

I've now been referred onto a bigger hospital to have a trial of nasal cpap - just waiting for this appointment to come through.

[egzbuen]

Welcome to the board and to the fold.

I understand you had diagnostics done but how about titration?

Here in my jurisdiction, diagnostics test is used to determine if one has OSA or not. On the other hand, a second test which is titration is done to check the pressure you will use. Please correct me guys if I got these right.

It would help our resident experts if you can post the other data of your results.

Sent from heaven

[LSAT]

Welcome to the board and to the fold.

I understand you had diagnostics done but how about titration?

Here in my jurisdiction, diagnostics test is used to determine if one has OSA or not. On the other hand, a second test which is titration is done to check the pressure you will use. Please correct me guys if I got these right.

It would help our resident experts if you can post the other data of your results.

Sent from heaven

It doesn't appear that he has any data...only the letter.

[rick blaine]

AllanGF,

I'm guessing from your language (English English vs American English) that you're posting from somewhere in the UK.

But whether you are, or whether you're not, it will help people better advise you if say where you're from.

If my guess is accurate, then your treatment 'path' and the options available to you will be slightly different from those offered to most members here.

[AllanGF]

Thanks for the replies - yes you're absolutely correct, I'm from the UK - Glasgow to be specific, so all my treatment is being received through the National Health Service.

Unfortunately I don't have any further statistics yet, the only thing I have is the letter. To be honest I had thought the consultant might have phoned me to go through the results, but unfortunately not so hence why I'm joining this forum to try to find out more!

In all honesty I'm really just pleased that I have finally found out that there is something wrong with me, I have spent the last few years thinking that I had suddenly become stupid/lazy/fat etc. Since I started feeling tired all the time I have put on about four stones in weight without really changing anything in my diet.

From reading up on the internet about this condition a lot of people seem to be worried about getting their cpap or other treatment whereas I seriously can't wait! I feel like I'm going to get my life back again! I've already decided I'm going to take a week's holiday from work once I get the cpap to give myself time to get used to it.

[AllanGF]

AllanGF,

I'm guessing from your language (English English vs American English) that you're posting from somewhere in the UK.

P.S. I've gone over and over my message and I still can't guess how you figured out I was British from what I have written!

[DWaldman]

AllanGF,

I'm guessing from your language (English English vs American English) that you're posting from somewhere in the UK.

P.S. I've gone over and over my message and I still can't guess how you figured out I was British from what I have written!

A few things give it away. Refer me on... I've now had a letter, referred onto a hospital... Us yanks would crudely say, refer me, I got or I received a letter , referred to a hospital

[palerider]

It would help our resident experts if you can post the other data of your results.

it would help the resident experts if you'd let them ask for what they need.

[egzbuen]

It would help our resident experts if you can post the other data of your results.

it would help the resident experts if you'd let them ask for what they need.

Classic palerider response. Three thumbs up.


Sent from heaven

[rick blaine]

AllanGF,

OK. Glasgow, Scotland. Just to keep it separate from all the other Glasgows. There are 21 Glasgows in the United States alone.

From what you say, you've had the kind of home 'sleep study' via a kit in a small canvas bag. With: a clip thing to go on your finger (blood oxygen level and pulse); a stretchy, hollow tube to go round your chest (breaths or 'resps'); and a clear plastic tube with two bits on the end to go up your nose (to register air flow). And all three plugged into a grey plastic recorder the size of a pack of cards.

This is sometimes also called a poly-somno-gram - or PSG for short. The two key numbers are: how many 'events' per hour? And what was the percentage of oxygen in your blood?

An event is any stopping of the flow of air which lasts 10 seconds or more. And note, that can be a lot more.

Up to 5 events per hour is 'ordinary', the average person.
From 5 to 14 events per hour - mild to moderate.
From 15 to 29 - moderate to severe. The NHS treats at '15 and above'.
Above 30, that is severe.

With oxygen:

94 to 99pc - normal;
> 90pc, acceptable;
< 80pc - even if only for a few minutes - bad.

The good news is that sleep apnea treatment is highly effective.

From what you say, the next step for you is to have an over-night stay - probably in Glasgow Royal (Hospital) - in what's called the 'sleep lab'. The first half of the night, they can confirm what the PSG said. The second half of the night, they can try out various masks and find out by gradual adjustment what pressure(s) you need.

This latter process is sometimes called 'titration', particularly in the US, with that culture's love of nominalizations. Me, I just call it gradual, and tailored-to-the-person, adjustment.

Within the NHS, it's quite unusual to have an over-night sleep study. In my area, only 10pc of possible SA patients are assigned one. The other 90pc are diagnosed from the PSG home-study.

I think in your case, and with that high level of events, they want to be sure they get it right. Think of it as being given extra attention.

As for explanations - you may not get to see your consultant. Or if you do, it might just be a token meeting. The bulk of sleep apnea treatment in the NHS is given by specialist nurses and specialist physiologists.

So ... as well as the overnight stay - or as part of it - they will issue some kind of machine, and should try out a few different masks on you with the machine running - to find the one that works best for you.

Now, one more thing for today. In my opinion, 77 is high enough for you to be seen 'quite soon'. But in addition to that, patients can be put on the fast-track for further investigation and treatment depending on what they do for a living, on their job. For example, does your work involve driving?

If you think you should to be fast-tracked, you might not wait till they next write to you. You should call up the people who sent you the letter and ask if you come under the NICE fast-track scheme.

And if I have the time later, I'll tell you what I saw in your sentences.

[AllanGF]

AllanGF,

OK. Glasgow, Scotland. Just to keep it separate from all the other Glasgows. There are 21 Glasgows in the United States alone.

From what you say, you've had the kind of home 'sleep study' via a kit in a small canvas bag. With: a clip thing to go on your finger (blood oxygen level and pulse); a stretchy, hollow tube to go round your chest (breaths or 'resps'); and a clear plastic tube with two bits on the end to go up your nose (to register air flow). And all three plugged into a grey plastic recorder the size of a pack of cards.

This is sometimes also called a poly-somno-gram - or PSG for short. The two key numbers are: how many 'events' per hour? And what was the percentage of oxygen in your blood?

An event is any stopping of the flow of air which lasts 10 seconds or more. And note, that can be a lot more.

Up to 5 events per hour is 'ordinary', the average person.
From 5 to 14 events per hour - mild to moderate.
From 15 to 29 - moderate to severe. The NHS treats at '15 and above'.
Above 30, that is severe.

With oxygen:

94 to 99pc - normal;
> 90pc, acceptable;
< 80pc - even if only for a few minutes - bad.

The good news is that sleep apnea treatment is highly effective.

From what you say, the next step for you is to have an over-night stay - probably in Glasgow Royal (Hospital) - in what's called the 'sleep lab'. The first half of the night, they can confirm what the PSG said. The second half of the night, they can try out various masks and find out by gradual adjustment what pressure(s) you need.

This latter process is sometimes called 'titration', particularly in the US, with that culture's love of nominalizations. Me, I just call it gradual, and tailored-to-the-person, adjustment.

Within the NHS, it's quite unusual to have an over-night sleep study. In my area, only 10pc of possible SA patients are assigned one. The other 90pc are diagnosed from the PSG home-study.

I think in your case, and with that high level of events, they want to be sure they get it right. Think of it as being given extra attention.

As for explanations - you may not get to see your consultant. Or if you do, it might just be a token meeting. The bulk of sleep apnea treatment in the NHS is given by specialist nurses and specialist physiologists.

So ... as well as the overnight stay - or as part of it - they will issue some kind of machine, and should try out a few different masks on you with the machine running - to find the one that works best for you.

Now, one more thing for today. In my opinion, 77 is high enough for you to be seen 'quite soon'. But in addition to that, patients can be put on the fast-track for further investigation and treatment depending on what they do for a living, on their job. For example, does your work involve driving?

If you think you should to be fast-tracked, you might not wait till they next write to you. You should call up the people who sent you the letter and ask if you come under the NICE fast-track scheme.

And if I have the time later, I'll tell you what I saw in your sentences.

This is great, thanks very much for such a detailed response! So if over 30 is severe and I measured over 70, is that an unusually high number? You're spot on about the kit etc., and about the hospital, it is the Royal Infirmary I've been referred to, previously attending Wishaw General.

TBH, I don't think there's anything special enough about me to warrant being fast-tracked, there's no doubt people out there who need it more than me so I'll wait my turn. No driving involved in my job, other than the 20mins commute to the train station each day. I've put up with it for this long, so no reason why I can't wait a bit longer.

[Julie]

While 70 isn't low of course, many test higher than that, a fair amount over 100... so don't get too concerned about the category labels. Another thing is to realize that regardless of category, your C/Apap pressure settings won't necessarily reflect it because the amount of air needed to keep your individual airway open has no real bearing on how many apneas you have... a person who's tested as 'mild' may need a much higher setting than you if their airway is narrow for whatever reason.

[yaconsult]

The AHI number represents how often you either stop breathing (apneas) or have very shallow breathing (hypopneas). The AHI number given is the number of events on average per hour. So you stop breathing, basically, every minute - so it's no surprise how tired you are! My AHI is very similar at 80. In the U.S., often people in the severe category are often/sometimes provided with loaner machines as soon as the results come in. I don't know about the UK system, but the sooner you can get a machine, the better. So if you can speed things up by contacting the doctor's office, that might be a good idea. I suspect that people with severe apnea, like us, tend to adapt to the therapy faster because it's such a tremendous relief to be able to breathe at night.

We would always advise that you get involved before a machine is provided to you to ensure that you get an auto cpap with full data that is compatible with the wonderful free sleepyhead software.

Please check out this very informative information:
http://adventures-in-hosehead-land.blog ... -with.html
https://maskarrayed.wordpress.com/what- ... me-part-i/

But there are newer models of cpap machines. The best thing would be to find out which machine they are going to provide you in advance by phone, letter, etc. and then come here and get advice on which machines you should try to get. The machine models within the product lines are intentionally similar and confusing and it's really important to get the right one. If the equipment provider (DME) is able to get away with giving you a cheaper, less capable model of cpap machine then he makes more money but you won't have the data you need to be able to evaluate and optimize your therapy.

[Pugsy]

When the NHS is involved I doubt you will be able to have much input into the type of machine you end up getting.
That's just the way the NHS does things. If you end up with a machine that isn't full efficacy data then if you want a different one it will be on your dime.
Sometimes they "loan" out an apap to help determine pressures and then you take it back and they give you a fixed cpap machine that may or may not offer data. I have seen a few people lately though coming from the NHS system with full data apap machines...I don't know if NHS dispensed them or they bought them on their own.
It used to be that NHS dispensed the cheapest bricks possible but they may have changed.
Cross that bridge when you come to it.
The NHS system for dispensing cpap equipment is a lot different than the US/DME system. From what I have heard it's their way or the highway.

[rick blaine]

Hi Pugsy,

Just so you have a rounded picture patients are not obliged to go to the NHS for treatment. There is a small but significant private medicine sector in the UK. And there are even private medical insurers such as the British United Provident Association, or BUPA.

You pay a regular subscription, and then, when you get ill: you get to see a private primary-care physician; you can get sent to a private MRI unit for investigation; and if it's necessary, you can get operated on by a private surgeon, in a private hospital.

A lot of BUPA memberships are given as part of the salary package for middle- and upper-management in the corporate world. Or provided to professional football players as part of their contract. Or bought into by people who want to be away from their desk for as little time as possible. My fiercely hard-working family lawyer, for example, subscribes to BUPA.

And other insurers are available.

One respected source says that roughly 11 per cent of the population have some form of private insurance cover - but not all of those people have 'fully comprehensive' cover. Ie, the number and range of conditions the insurer will cover is limited.

Now, the possibility of private treatment extends to sleep apnea. If you hunt around in the UK, you can find doctors who will see you privately (that is, for a fee), who will send you to a privately-run sleep lab - one where you can have a full over-night study (for a fee). And once you have a scrip - which the doctor will supply (for a fee) - both Philips Respironics UK and ResMed UK will sell you whatever the scrip asks for.

And then there are people like me, who have a foot in both worlds. I am an NHS patient, sent to the local NHS-hospital sleep-service unit by my NHS-funded primary-care physician - but I use a Philips Respironics 561- which I bought with my own money. Just as, before that, I bought their 551 - with my own money.

The staff at my local sleep-service unit are not freaked out by this. As far as they're concerned, it just means they have one more of their NHS-bulk-purchased 461-Pros to dish out. And at my annual follow-up, the staff and I have great chats because, to be honest, they don't have too much experience with APAP and BiPAP units - so I end up teaching them stuff.

I've even passed on gems of wisdom which I have learned from your good self, Pugsy. So there is at least one corner of this little island where your wisdom and experience hath not only been voiced cogently abroad, it hath charmed those who have ears to hear.

As to the data efficacy thing, the machine which is issued by the NHS varies from region to region and hospital to hospital, altho' the standard treatment is a fixed-pressure machine. Some hospitals, I know, are still issuing the S9 Escape. On the other hand, some hospitals are dishing out Airsense 10 Elites. My own area, Gloucestershire, uses 451-Pros, 451-AutoIQs, and 461-Pros. So, overall, It's a mixed picture. And the 'bricks' are being replaced as they reach the end of their useful lives.