I have FA, diagnosed about 20 years ago at age 19. I have been very lucky and progression has been slow. However my heart is not doing so well. I have Dilated Cardiomyopathy, suffer from Atrial Fibrilation/Flutter/BiGeminy, have an ICD implanted and had two ablations in the past year. I was cardio inverted twice last year and the 2nd one was unplanned and had I been at home I would not have seen the morning.
Does anyone else here with FA have similar problems? I would especially like to hear if anyone has any experience related to heart transplants in people with Ataxia - especially in the UK?
Thanks!
Sam
Hi Sam
I also have atrial fibrillation, and that started about 10 year's after my CA diagnosis. I don't know if they're connected, this thread may help. I have a pacemaker, but no warfarin because of the danger of falling because of my CA.
The NHS were superb with my pacemaker (I had an ablation also but that didn't work), but I don't/haven't had a transplant.
The NHS have been brilliant for me too - I dread to think how much time I've used! I had a bit of a battle between the cardio and neuro side of things for the blood thinners but int on Warfarin in the end as the risk was too high. For the last few years though I have been on Dabigatran. If I have a fall and bleed there is something they can give me quickly reverse the effects.
As I understand it people with Ataxia often have heart complications for unknown reasons but I think I have extra issues on top - I haven't met anyone yet whose heart is failing - my last EchoCardiogram showed an Ejection Fraction of 20% and its steadily declining.