Anyone with TOF history?

[Janco]

I was born with Tetralogy of Fallot,and it was repaired. Then when I took anti-malaria medication my AFIB journey began. But I think the scars on my heart did have an influence in me getting AFIB. Is there any Tetralogy of Fallot patients on the group. Or any people who had any other type of open heart surgery that led to AFIB?

[rosyG]

Sorry to hear this- I attended a lecture on various CHDs and To F was included - I think ablation for AF is more tricky than those of this site have had so you need specialist advice here

[Janco in reply to rosyG]

rosyG

I had my ablation in 2003, but my cardiologist did not refer me for more than 3 months because at that stage EP's did not do ablations on heart's that was operated on.

According to my EP, the ablation was only 70% successful. My atrium was too big.

[Hidden]

Hi, Janco.

I'm a TOF patient so I sort of know what you're going through.

I too have Afib along with many other problems associated with TOF patients. I got mine after my last heart surgery 4 years ago.

It's an absolute nightmare. My INR levels are never stable so my warfarin is up and down. I can't take any other substitute because of the TOF. When I asked my consultant why did I get Afib. He just told me TOF patients are at high risk of getting it.

I have gone on to have 4 TIA this year as my therupitic levels are so erratic. My Afib plays up at least every other night, so I don't know what sleep is since I've had Afib.

I was on loads of meds until recently. Then my heart rate decided it doesn't want to go above 50bpm. So the consultants have had to reduce my meds.

Even during exercise mines not going above 70bpm so I'm waiting on a pacemaker now. I have the wires already in so it won't be a problem to add the device.

I went to see the consultant about an ablation. But I decided against having it as the pro's out weighed the cons for me. The consultant said he would damage my heart more doing it as he would have to go through my Tricuspid valve repair, which he didn't recommend for me. And I would more than likely need a pacemaker within days of it. He also said I would be lucky if it lasted me 6 months before the afib would be back. So I refused it. That was 2 years ago.

However, they are now talking about doing it as a joint operation with the pacemaker now. But I'm still not sure if this is going to happen. I'm waiting for my consultants to have their MD meeting on me.

I hope this helps. If you have any questions then don't hesitate to ask me. I don't think there are many TOF patients on here.

Sarah.