There is life after an AV Node ablation and Pacemaker

[Guest guest]

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.