Alice Odeke’s world was turned upside down when she was diagnosed with cardiac amyloidosis, a rare condition which has led to heart failure. The 58-year-old from Bromley, Kent, talks about how she learned to cope with an uncertain future and got her life back on track.
“In spring 2021, after the third Covid-19 lockdown, I noticed I was getting breathless. My niece commented that I was puffing and panting when going up stairs.
Before this, I had enjoyed years of good health. I cycled from London to Paris, London to Amsterdam and even walked from London to Brighton for charity.
I was putting on weight and my joints were uncomfortable or painful. I went to see my GP, which started months of tests and long stays in hospital, as doctors tried to find out what was wrong with me.
I was initially prescribed beta blockers but at that point doctors did not know what they were treating.
From April to August, I was in and out of different hospitals. It went on so long that I worked from my hospital bed – I’m an architect.
Then one day, in August – I will always remember this – the consultant cardiologist came, shook my hand, and said, ‘I think we know what is wrong with you. You’ve got cardiac amyloidosis’.