Multiple Ablations for Sustained VT (structural heart disease), Activity, Meds?

• by natlat
• 2018-05-20 07:24:40
• Surgery & Recovery
• 1017 views
• 0 comments

Hello everyone, I have structural heart disease from an unknown cause and source.  I have been to every top doc in Boston and continue to see the team at Brighams. I had an ICD put in 5 years ago for sustained vtach while running.  I am 43 and active.  I was seeing a doctor at the time who kept upping my meds (Sotalol) and I felt terrible for 2 long years.  I sought out a doctor, Dr. Stevenson, who said he would try to help me (this was 2.5 years ago). He performed a successful ablation inside and outside my heart, he was able to instigate the arrhythmia then.  I was doing well for 2.5 yrs, running and no meds but still had an ICD - it never went off. Until 2 weeks ago, while running (hard), I was paced out of an event out of the blue.

 I am now under the care of his protege, Dr. Kapur at Brigham, who is young but worked directly with Stevenson (who has since moved to Tennessee). I am hoping he has the same experience that Dr. Stevenson has as far as ablations etc. I had/have monomorphic VT originating from my right ventricle apex. All other tests are fine.  I am having another MRI done because I had an explant of my device in December of this past year and they implanted an MRI compatible device. Hopefully my MRI will shed light on something -  hope it helps with the surgery too. The last MRI I had one was pre-ICD. 

I have since removed running from my exercise regimen and now power walk and my heart rate is about 20 beats to 30 beats less than it were if I were running. So far I am doing ok and remain off meds.  Docs wanted to put me on meds or or said I could wait until the ablation, but I decided to wait on the meds and  to try to manage my HR myself by not pushing hard like doing strenuous activities like running and now I am power walking. But it still could happen so I am a bit fearful but not going to let it paralyze me.  So far the only time I have had events was while running. But who knows.

I am scheduled for a second ablation on June 11th or  18th at Brigham under Dr. Kapur, the place where I got my first one done.  Even if it is successful, which I hope it IS successful, I decided I don't want to run anymore and will continue power walking and do activities with lower heart rate and stress on my heart.  Just hope this thing (VT) does not start effecting that! and don't want to be medicated nor live like a slug.  I was medicated for two long years before my ICD and could hardly do anything!  Meds really effect me.  

I wanted to see if there were others out there, like me? multiple ablations? no meds? a recurrence after a few years?  

I hope to hear from you!