ARVC followup tests ??

[Nic6]

ARVC.....

My 23 year old son was diagnosed with this condition 2 years ago,. He was a keen triathlete prior to this.

Long story short he's very lucky to be here and all credit to the resus team at Dumfries hospital.

He has a debif fitted and on 5mg bisoprolol. Just amazed it's taking 2 years to have follow up tests to show there is a slight change in the right ventricular. That was only done while at genetic testing last week in Glasgow, after I raised concerns on how we monitor this condition.

Anyone else experienced this? or have you been tested throughout to check for changes.

Any information would ve good.

Nic

[xXRiversXx]

Hi Nic,

My mum was diagnosed with ARVC following a cardiac incident a few years back. I was then offered genetic testing to see if I had inherited the gene (as its a 50/50 chance) unfortunately I have, and now have regular follow ups yearly. I think this is standard practice?

Sorry to hear your son had it so young I'm 32 and I'm still struggling to get my head around it...

[Nic6 in reply to xXRiversXx]

Thanks for your input. Yes a very young Age but least he is still here. He's on the autistic spectrum too, so he's dealt with it amazing. We have now gone back to the consultants in Glasgow who have ran tests which were abnormal. We have been under their care since January and his bloods are nearly back to normal level. So back on the right track with doctors who know how to manage this condition. (Worsened due to ICD being discharged 3 times in a year and no after care or guidance given)

Please follow all advice given and if you feel something isn't right ask for a 2nd decision. Wishing you all the best 😊