Hi All

I started this post over a year ago and would like to give an update. I am 51, and have Cardiac Amyloidosis.

Firstly I would like to thank you Pat…… one thing stuck in my mind at the beginning of this battle and that was your words “There is a tomorrow and a tomorrow and a tomorrow” I have never forgotten this and you are so right :)…[Read more]

Linsey you are just up the road from me….I have my treatment at Colchester general Hospital, although am under National Amyloidosis Centre in London. Colchester have never treated Cardiac Amyloidosis, but my haemotologist is now well on board and between him and london we manage well.

There has been no pattern to my treatment. I started chemo…[Read more]

Linsey Hi

I am in Colchester and I think you may be local to me….. I am 50, have cardiac amy like you and have just finished cycle 7 of CVD….. any questions you have please ask. Sorry I havent replied before…. have had bad couple of weeks but am okay again now 🙂

Much love

Sandra

Pat
Thank you so much for your reply. It is so lovely to hear from someone who can put my feelings into words and understand ….I have just finished cycle three of a possible eight and am due back to NAC in two weeks. Most days I am terrified that I wont wake up, but as you so rightly say there is a tomorrow and a tomorrow and a tomorrow …..I…[Read more]