Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Have been reading about discussions re: AV Node ablations/pacemakers with interest. In most of the afib groups, the AV Node ablation/pacemaker route is to be avoided at all costs, even if it means having ablation after ablation after ablation in search of the the ultimate cure. I have had 100 burns/scars due to ablations that were unsuccessful. While ablations for many are successful, there is no long term study of the negative effects of extensive scarring caused by repeated procedures. In my case, as I have previously mentioned, I spent 21 days in the hospital last year and almost died after a TEE (I happen to be 1% of the population that developed a potentially fatal blood reaction to the Benzocaine spray used to numb my throat before the TEE), so the thought of needing future cardioversions/TEEs, etc. was not one that I could risk, in my opinion. So, finally, I said that enough was enough, and I decided on the AV Node ablation/pacemaker. It was the right decision for me. Yes, it is permanent; however the results in the end have been worth it. --I have not been in the hospital for 9 months (today!, also my 9mo anniversary of having my PM) --I am working 24-30 hours per week in a highly stressful field (I am a hospice licensed clinical social worker in an inpatient hospice unit) and have the stamina to do so. --I am exercising strenuously for 120 minutes per day doing cardiovascular and weight workouts --I am planning vacations and fun times instead of when the next hospitalization will be. Clinically, the following has occured for me: --My afib has decreased to less than 1% with approximately 2 episodes per day at less than 5 minutes a piece. Before the av node/pm, I was having 3 day episodes of afib with heart rates in the 200s and then plummetting to the 30s, with several near syncope experiences. --My EP and Cardio are discussing taking me off of warfarin and starting me on ASA 325mg. I am still on the fence about this one. As I see it, even if I am having brief episodes of afib, eventually they could lengthen and because I am not always aware of the afib, I could be at risk for stroke. I am able to monitor my INR frequently with a simple finger stick with my own INR machine, and have been able to keep my INR in range for months now easily. So...not sure how to go here. I'll know more onJune 8th when I see the EP and get my PM interrogated. --I am feeling well 99% of the time. I have the occasional days when my ectopics are unconfortable but for the most part, the combination of Omega 3 fish oil capsules (about 5 GRAMs/day), Verapamil 720mg/day (I could never take this much without the PM!)which treats my HTN and excessive PACs leading to afib, and an ace inhibitor have greatly reduced my arrythmias. --Emotionally, I am adjusting well and moving forward. So, essentially, the AV Node ablation and PM gave me my life back. I can now be the active, vibrant 49 year old woman that I am. Clearly, it was the right decision for me. Quality of life vs. quantity of life has always been my philosophy, especially since taking on the role of helping literally 1000s of pts and families in the final dying process. A special friend reminded me of that when I was agonizing about the decision and once I returned to my truth, my decision was made. I am concerned at times, that on these afib boards, that those considering the same path that I took are often not able to truly get the support that they need to do what may be a right decision for them due to the fear of this procedure. I will say that this particular forum has been tolerant and respectful of all views. On another board, when I mentioned the AV Node ablation/PM route, I got such negativity and fear based responses that I was left alone and isolated, not able to freely discuss the pros and cons rationally, without fear. The reality is that the technology is truly amazing and for some, a cure is possible. For others, seeking procedure after procedure that ends in failure to cure can be more detrimental and rob the individual of years of life, replacing peace and joy with anxiety and poor health. Not all afib is curable. I was not willing to try again a third time without a guarantee, which of course couldn't be given to me. I had too many complications and preservation of my life was the target to set my sights on. I hope that each person who needs to make such a final and life altering decision can be supported to do so without fear, and with as much fact and support that we can give them. There is no right way to go here. What restores health, joy for living and peace of mind is what is the right way, different for each and every one of us. If I can support anyone here contemplating an AV Node ablation to do their research, study the pros and cons and get clear about what is right for them, I am here to do that. Please feel free to contact me. There is life after AV Node ablation and PM. Quote Link to comment Share on other sites More sharing options...
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