The continuing story of something completely different… (or more adventures at the sleep clinic)

Following my possible over-reaction (I’m still questioning that) to the sleep clinic letter that I wrote about here, and having rearranged the appointments for after I returned from holiday, I turned up at the Sleep clinic at Nottingham’s NHS Treatment Centre on cue on Mon 8 July.

There may be other types of snoring/breathing problems, but it seems that what I have is called Obstructive Sleep Apnoea [OSA], which is caused by the soft tissue at the back of one’s mouth relaxing and therefore causing an obstruction, which in turn causes apnoea, or stopping breathing.

I have gathered this information from chatting with family members, limited information gleaned from clinic technicians and reading. Up to the point of writing this update, I had not had a full discussion with a doctor about the test results or the condition. I am not happy about this. I am not happy about a lot of the ‘care’ I’ve (not) received at the Sleep clinic. It compares most unfavourably with Haematology. (I saw the consultant yesterday, but that piece of the story belongs in the next instalment.)

CPAP machine

Anyway, it seems that the best therapy for OSA is a Continuous Positive Airways Pressure [CPAP] machine. The CPAP machine blows air through a tube, into a small mask, which sits over one’s nose or nose and mouth, while one sleeps, with sufficient pressure to keep the airway open, leading to better quality sleep and most importantly for some, no snoring!

They call it ‘therapy’ rather than ‘treatment’, as there is no permanent cure. Each time the machine is used, snoring and apnoea episodes do not occur. If the machine is not used one night, the snoring and apnoea will resume on that night. This means that if I go ahead with using the machine, it will be a permanent fixture in my life… A lot more intrusive than taking antiviral and antibiotic tablets every day!

Pik described himself as a physiologist, while the Reception staff had used the word technician. Either way, he was friendly and obviously well-experienced and had the added benefit of also having sleep apnoea himself, so he understood the practicalities of using a CPAP machine. He had only discovered he had sleep apnoea after working there and trying out the monitoring equipment himself, out of curiosity.

He was there to do a job: fitting me with a CPAP machine to trial it. There was no discussion, at least not initiated by Pik, about my test results, the diagnosis, or how I might feel about any of these. He did respond, as well as he could, to the technical questions I posed, telling me that I had had an average of 27 ‘events’ per hour and that this showed moderate sleep apnoea. But I got the feeling that I was asking the wrong person, taking up time and disrupting the main focus of his work.

IMG_1703 IMG_1704There were graphs on file from the monitoring tests. He allowed me to take photos, but advised me that they don’t give them to patients due to data protection, but also because we wouldn’t understand them and might misinterpret the data. I can’t begin to write about what’s wrong with this sentence!

Fair enough, he is not the doctor and it’s not his job, or even within the remit of his qualifications to discuss a diagnosis with a client. But I wanted that discussion. I wanted to be given a diagnosis by a professional person, to be shown the graphs and what they mean and to be able to ask questions, before being fitted for any possible therapy.

Imagine if I’d been given the chemo drug cocktail of my initial treatment, as a taster… without being told specifically that I had myeloma and what it is? Of course that would never happen.

Yet again though, I got the impression that the needs and concerns of the patient are not the highest priority in this business-like, target-driven environment. I don’t think it matters that this condition is much less serious than cancer. I’m sorry to go on about it, but the lack of care has really upset me.

Dealing with the practical task at hand, Pik set the machine to build up from zero to the correct overnight pressure, gradually increasing over 10 minutes. So each night I would have time to acclimatise to the increasing air pressure blowing into my nose, before going to sleep.

ResMed Mirage™ FX maskWe discussed the type of mask I would need and at his suggestion – after all, what do I know about CPAP masks? – I agreed to one that just covers the nose, with straps around the head and cheeks to keep it in place. Pik thought it was the lightest and least invasive style. He said if it didn’t suit, I could try a different one, but he suggested that I stick with it for a while, as it might take time to get used to it.

Although he has apnoea too and uses a CPAP machine, Pik’s response to my expression of slight distress around using this completely unattractive device, particularly if I were to meet a new potential bed partner was “well, what would they prefer to sleep with, Darth Vadar or a snorting pig?” Maybe he’s happily single?! Maybe with that attitude, he will remain so…?!

But WTF???!!!

He delivered it quite kindly, so that I didn’t fully realise how outrageous it was that he’d said what he’d said till much later, well actually until right now as I’m writing it. I’m speechless! I’ve no idea why I didn’t thump him right there and then, but it didn’t fully register at the time. I think they call it shock. But I got what he said enough to feel completely dispirited and hopeless about any future night-time cuddling.

Points for technical competence = 10.
Points for compassion = Big fat zero!

I am loathe to post a photo of me with the mask on, but just to prove the point, I shall think about it before I publish this piece…

P1070242No, I’m not doing it here. Maybe in the next instalment. Trust me… and use your imagination. Attractive… sexy… cute… it is NOT! Really really NOT!

But all was not lost… I did get a rather smart, business-like bag to carry the machine and its accessories. I’m sure I’d look quite at home with it in any executive airport lounge.

To be continued… (and concluded, with any luck!)

 

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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8 Responses to The continuing story of something completely different… (or more adventures at the sleep clinic)

  1. I can fully understand your concerns. You should get an explanation and a diagnosis from a specialist not a socially challenged technician.. When/if you do see a specialist it might be worth you mentioning what the technician said, re: Darth Vador. He really should be advised to show more sensitivity.

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  2. Mum x x says:

    Your cousin in New York suffers from it too and uses a sleep machine. Why not ask him or discuss with him your feelings? Mum xx

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  3. It recently dawned on me that I was witnessing the onset of love in later life between two ‘old’ friends. Most heartwarming. And the point of me telling you? Is that one wears a brace since breaking their back and the other a mask to keep them from suffocating in their sleep. Love is blind, Jet. And possibly deaf, as well.

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  4. Pingback: The joys of CPAP | jet black living…

  5. Pingback: The sleep clinic chronicles continue… | jet black living…

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