I heard from the Royal Free yesterday and am now booked in there for 2 days of tests next Thurs & Fri to see if I have amyloidosis as well as myeloma and what impact it may – or hopefully may not – have had on my major organs.
Sounds like a pretty thorough barrage of tests, which include:
- ECG & echocardiogram (which I have to say I thought were the same thing?), to look for amyloid deposits in the heart
- Blood tests and radio-isotope injection
- A six minute walk test 'to evaluate my exercise capacity' (better lay off the choc for the coming week…)
- SAP or DPD scan (yes that's a DPD scan rather than a DPD scam, as I first read it)
- CMR scan, which is a cardiac version of an MRI scan
- Possible implantation of a Loop Recorder under the skin (to identify abnormal heart rhythms, hoping not..)
- Consultation – which might take a while, given how much there will be to feed back on.
Oh yes, and the joy of also having to bring with me a large container with 24 hours of urine in it, by tube – no spillage! Amazon couldn't deliver a container in time – and wanted £18 for the pleasure of one – and my GP receptionist thought I was asking for something utterly impossible, so nice one to Prof's Linda who is leaving one at CCL reception for me today. This one's for checks into kidney function, creatinine levels, albumin, proteins etc. And 'urine immofixation' too, apparently – if anyone wants to get fixated about my urine, they are more than welcome to x