Ataxia and Heart Problems

[Rudders_77]

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

[violasrbest]

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.

[Rudders_77 in reply to violasrbest]

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.

[SueMillman Partner Ataxia UK]

Hi Sam

Yes heart problems are common with FA and is featured in our Medical Guidelines. ataxia.org.uk/news/symptoma... I haven't heard of anyone with FA having a heart transplant in the UK but there are these references ncbi.nlm.nih.gov/pmc/articl... & friedreichsataxianews.com/2...

Sue

[Rudders_77 in reply to SueMillman]

Those links are excellent and just the sort of thing I was looking for. I am seeing my Cardiologist soon and suitable and a referral for an assessment for transplant is something I will be asking about depending on my current Cardiac function (not good I feel!)

Sam

[Rudders_77]

Quick update for those interested....

After continued issues and yesterday I had Ventricular Tachycardia and my ICD was triggered - I beat 240 ppm when it went off!! I have been in hospital for just over 5 weeks now and am currently at Papworth. Its taken time because of testing various parts of me for Ataxia related issues (lung strength etc) but I am now on the Urgent transplant list and staying here waiting for a heart to show up.

As far as I am aware I think this is the first time in the UK someone with Ataxia will have had this procedure so I feel very lucky my body is going to be able to cope with the operation and the recovery afterwards. I had thought Ataxia being life limiting would exclude me from this and that I didn't have long left because of the heart but now there is a very bright light at the end of the tunnel.

Cheers,

Sam

[stjamesangel]

Good luck and I hope you have a happy wonderful life xxx