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 🙂
I did 7 cycles of CVD between March 2014 and January 2015. It was not an easy journey and my treatment stopped because I could not tolerate anymore physically or emotionally.
It is now 7 months since I have had any treatment and I have thankfully maintained an amazing response to the CVD. My Flc’s are very stable ( tested every 4 weeks by NAC) and my heart failure Pro BNP measurement has fallen from 2330 last July to 292 this July….. I am not quite sure what this means with ref to heart wall thickness until I return to NAC in October, but something else I do, thanks to Pat, is listen to my body. I know I am not the same as I was before in many ways; I know live in the “slow lane” and I still get very tired, but hey….. I am good 🙂
Last month I enjoyed a short holiday to Spain- travel was something I never thought I would be able to do again. On previous short flights before the diagnosis my ankles would swell dreadfully and the last time I flew I was very ill….. This time I had no swelling at all! The travel was made so much easier by using special assistance at the airport….I would highly recommend this service.
Now I take each day as it comes….. if I feel like it I do it…..
It is good to hear how everyone else is doing….. keep positive…..
Much Love
Sandra
