In 2006 I was diagnosed with a rare heart condition, Arrhythmogenic Right Ventricular Cardiomyopathy, previously known as sudden death syndrome, a hereditary and untreatable condition. Not only have I had to cope with the fear of knowing I have a condition which would worsen over time but also the guilt of being the person responsible for passing it on to my son who eventually died at the age of 25.

The condition of my heart has recently had a dramatic downturn and I am classed as in the last stage of heart failure being dependant on oxygen 24 hours a day. I now have 2 large mains powered oxygen concentrators at home with a large (non-portable) oxygen bottle for emergency use, i.e. power cut. I also have smaller ‘portable’ bottles but these give a very limited life, I find heavy and I am in constant fear that I will end up stranded without the lifesaving oxygen I need. The doctors cannot tell me how long I have to live (whether 2 weeks, 2 months, 2 years or more) and tell me to “live the rest of my life to the full” but I can’t now I am tied to my oxygen.

I have, on short term loan, a portable oxygen concentrator machine which can run off a car’s power supply and also a rechargeable battery which can give me 4.5 hours of life without needing an external power supply. This machine has given me the opportunity to travel and see my family and friends but without my own machine, this may be the very last time I see them. This machine, however, is the only one available in Orkney so access to it will be very limited.

Whilst my husband currently works we still do not have savings to pay for a portable oxygen concentrator and we are also having to consider him giving up work to become my full-time carer.

I have always been too proud to ask for charity before but I now know without the help and generosity of others I will be trapped at home. To have my own machine would be like a new lease of life, however long it may be.

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