A Gold Standard Hospital Let Me Down
My sleep apnoea journey began in 2015 when I went to the doctor to get my very occasional heart palpitations checked, just to make sure that they weren't anything serious. Following a 24-hour home heart monitor, a slightly over-enthusiastic ECG (which led to a very stressful week during which I thought I was going to have to have heart surgery), and finally some more tests, it turned out that the palpitations weren’t anything serious. However, this process had started me on a road which resulted in a diagnosis in 2016 of mild cardiomyopathy (a slightly enlarged and weakened heart), but there was no clear reason as to why this condition might have arisen – I have always been and am still healthy and active. It was one of those situations where having medical screening had found a condition which could otherwise have remained with me undetected for my whole life, and even potentially have never been a problem. So, initially, I felt a little like a VOMIT (a Victim Of Medical Imaging Technology – if they look at any of us hard enough they’ll find a problem. I’ve stolen this acronym from the wonderful and entertaining Dr Phil Hammond). But in retrospect, I’m really incredibly lucky that everything has worked out as it has.
Is it Sleep Apnoea?
Then, over Christmas 2016 I had a very bad couple of months in which I felt ill all the time and simply wasn’t recovering, and was waking up on occasion feeling genuinely as if I was going to die, with the most incredible and intense sense of doom. As I sleep alone I had recorded myself during sleep (using one of many smartphone apps) as I was sure there must have been something going on, and by now (along with my sister-in-law – a medical research scientist at Addenbrooke’s) was beginning to suspect the possibility of sleep apnoea. The recordings, whilst not great, did suggest some breathing interruptions. One GP at my surgery was reluctant to consider me (I suspect because I am not overweight, was only 40 at this time, and didn’t present as someone with a tiredness problem, but who knows). However, fortunately the recordings did enough for the GP I actually saw to refer me on. I felt lucky as I was referred on to what my GP described to me later as a “Gold Standard” hospital (who I won't name here). It was described to me as such when I got the results back from my overnight oximetry monitoring and was told I didn’t have sleep apnoea. (I have since learnt that a pulse oximeter 'study' is not a reliable way to diagnose sleep apnoea).
The disappointment of not having Sleep Apnoea
Strangely – some might think – being told I didn’t have sleep apnoea was actually disappointing. The reason for my disappointment was that, by this time, I had discovered that there was a potential causative and curative link between sleep apnoea and the heart condition I had been diagnosed with. Therefore, if I had sleep apnoea, then I had a possible treatable cause for a heart condition I had been previously told I would just have to live with: “it might get better, it might get worse”. And if sleep apnoea was the cause and treating it would relieve my symptoms, then of course I could maybe also get off the medication I was taking.
So after having been told by the un-named "Gold Standard" hospital that I didn’t have sleep apnoea, that, I thought, was it! At this point I was feeling and sleeping slightly better – I had evidently got over the illness that was exacerbating my sleep interruptions over Christmas – so I reluctantly accepted that I had been mistaken. However, the overnight disturbances continued (although possibly milder) and I would still wake up with a pounding heart and a sense of foreboding, and still suffered from night sweats. The possibility of my having sleep apnoea obviously never completely left me, and as part of my research I discovered there was also some suggestion of a genetic or familial link for the condition – my father had sleep apnoea; he was, ironically, very successfully treated by the "Gold Standard" hospital.
.....then along came 'Hope'
At some point whilst looking into the condition I came across Hope2Sleep’s website, and hired the pre-diagnosis screening kit, which comprises of both pulse oximetry AND a breathing cannual. I did two nights' observation which showed the possibility of sleep apnoea, and Kath was incredibly helpful and supportive following my result and pointed me in the direction of the wonderful Consultant at a different hospital, in whose care I now am, who recognised the link between my sleep apnoea and the cardiomyopathy and knew it was important to treat me!
I am therefore on CPAP for a combination of reasons: both because I have sleep apnoea and because it could be a contributory factor for my cardiomyopathy, and in the hope that treating it will alleviate my cardiomyopathy. And I have to say since starting CPAP therapy my heart palpitations overnight are much reduced, and during the day have almost cleared completely. Long may this continue.....
Hopefully in six or twelve months, after my next heart consultation, I will find out that my heart health has improved too; fingers-crossed! In fact, the research I found suggesting that sleep apnoea can cause the heart condition I have, with exactly the characteristics I display was interesting enough for my consultant to ask to keep a copy of the article's abstract (it was taken from The Lancet, so not just some online forum).
One thing is for sure – I would not have successfully crossed the finish line of my patient journey if it hadn’t been for all at the Hope2Sleep Charity and Kath in particular; they have been brilliant in their knowledge, support and care. Thank you again!!
It has not been an easy journey, and there have been times when I genuinely felt like I was at odds with those who were there to protect and improve my health. Fortunately for me, there have also always been others willing to listen and support me. For the good of your health, get yourself checked and keep fighting.
Jonathan Jarvis - Living in 'hope' now I have my diagnosis!
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