My Cardiac Amyloid story

I am a 74 year old man who, although never having been what you might call super fit, have always been quite healthy. Never had any major illnesses, never been on any long term medication and in fact its quite rare I ever had to visit my doctor. However, early in 2018 I started to feel breathless when out walking which got progressively worse over a quite short space of time. After having had to stop when walking uphill or climbing stairs I visited my GP in March of that year. I went thinking that it may be the onset of a chest/lung problem but after an x-ray dismissed this and following a blood test he quickly diagnosed a heart condition and having noticed the onset of odaema in my legs referred me to a cardiologist.
The next twelve months consisted of ecg’s, echocardiagram, stress echocardiogram and an mri scan. I was lucky at this point in that my cardiologist, although never having met anyone with it, had heard of Amyloidosis and after studying the MRI results referred me to the National Amyloid Centre in London.
Three days of tests at the NAC showed me to have Amyloidosis with cardiac involvement. A bone marrow aspirated at the local Royal Oldham Hospital confirmed this to be the AL type.
I then commenced six months of VCD chemotherapy although the ‘C’, Cyclophosphamide, was discontinued after just one cycle due to it affecting my kidney function. I had the usual side effects , fatigue, constipation, weight loss, insomnia, and a total loss of taste, but no nausea!
At he start of treatment my Kappa number was 1259 coming down to 10.6 at the end of treatment and at present although a little higher it is still within range, (I send a blood samples to London every six weeks).
I finished the last cycle at Xmas 2019 and was due to go to the NAC in May last year for a check up but of course this was cancelled due to covid but at present I feel very well with no breathing problems but have been left with peripheral neuropathy, apparently a common side effect of the steroids, but as my haematology consultant said, a small price to pay.

My Cardiac Amyloid story – Peter – United Kingdom