PLEASE HELP

HELLO IA M 28 YEARS OLD AND HAVE IST. I HAVE HAD 5 SA NODE ABLATIONS AND 1 AV NODE ABLATION. MY PACEMAKER WAS IMPLANTED IN 2004. I CONTINUE HAVING IST EVEN THOUGH I AM ON THE MAX OF MEDS I CAN BE ON. MY CARDIOLOGIST WANTS TO HAVE MY COMPLETE ELECTRICAL SYSTEM ABLATED AND BE PACER DEPENDENT. I HAVE SEEN TWO EP'S AND BOTH DO NOT WANT ME TO BE PACEMAKER DEPENDENT THAY THINK I AM TOO YOUNG. INSTEAD THEY HAVE THROWN AROUND THE IDEA OF OPEN HEART SURGERY AND HAVING THE OUTSIDE OF MY HEART ABLATED. MY CARDIOLOGIST FEELS THAT IS TOO INVASIVE. WHAT ARE THE CONS OF BEING PACER DEPENDENT. PLEASE HELP ME I AM SO UNHAPPY AND FEEL I AM BEING TORN IN 5 DIFFERENT WAYS I JUST WANT TO BE AS NORMAL AS POSSIBLE AND STOP HAVING FAST BEATS AND WORRING ABOUT PASSING OUT (WHICH I DO OFTEN) THANK YOU.


7 Comments

Hi SN,

by Gellia2 - 2007-07-18 10:07:22

You are being torn! I'm so sorry. It can't be an easy decision. I can't tell you what to do, but I have been pacer dependent for 32 years (I was 26 for the first pacer). When I think about it, it is a bit scarey, but for 32 years I have done well depending on that little (well, the first wasn't little - it weighed 2 1/2 pounds) machine ticking away. It hasn't failed me yet, even though I have had some problems over the years. Many people are totally dependent on their pacemakers and do very well. Follow up care and proper monitoring have worked for me.
Good luck with whatever decision you make. The people on this board are very helpful.
Gellia

Difficult Decisions

by BABlocker - 2007-07-18 11:07:48

SN,
I can remember when I had to make the decision to have my AV Node ablation and pacemaker implantation almost 2 years ago and I was quite concerned and anxious initially. But, it has been two years and I am able to live my life fairly well. I still am challenged by arrythmias, but the pacemaker has limited the effect it has on my ventricular rate and response, along with the AV Node ablation.

Actually, if you have had an AV Node ablation already, you are already PM dependent, if that was successful. Your top and bottom chambers of your heart have been disconnected, leaving you needing a pacemaker for proper heart function. You state that you also have had SA Node ablations...were they successful? If so, what other areas of your electrical system will they be targeting?
The dilemna, as I am reading it, is how to treat the IST and whether to consider open heart surgery for a MAZE procedure. That is a tough one. Ultimately that will be a decision that you and your family will make after weighing the pros, cons and risks compared with your quality of life now.

Give yourself some space and time to become comfortable with the choices and make the decision when you are sure of what feels right for you. I avoided the AV Node ablation for months, while my cardiologist and EP was advocating for it until I was SURE it felt like the next step to take. I asked those who had the procedure done and how their quality of life had improved and when I had received enough responses that were positive and reassuring I allowed myself to go that route.

It is somewhat disconcerting to know that this battery powered system is keeping my heart beating, but my fears about it's unreliability has faded with time.

Good luck and please stay connected as you move through this decision making time. Have faith that you will make the right decision for you.

Seek other advice

by dixon - 2007-07-24 03:07:54

When I was in the operating room getting my pacemaker I was waiting for the team to finish what they called "mapping the heart". This patient also had a pacermaker but has a serious arithmia problem where the chambers were firing together. I'm not sure whether they called it ABLATED or not but they used a laser to deaden the electrical system (they said less scarring) and monitered him as they went along. The whole thing took about 6 hrs and he was awake athough sedated for comfort. They said when they wheeled him out that the procedure was a success and that he probably wouldn't even require his pacemaker anymore. His problems are more than likey different from yours, but the procedure seems more updated. Don't know where your from but this took place at the Hamilton General Hospital in Hamilton Ontario Canada. Good luck and hope this helps. d

wow

by sweetkozy - 2007-07-24 05:07:29

I am just amazed that you had that many ablations. My EP doctor will only do a total of 3 ablations maybe 4 if it didn't work the first few times on a particular node. I have had 2 SA Node ablations and 1 PM implantation and both ablations were short lived. You have a tough decision to make, while I can't give you too much advice, I hope some of the other members can help you out. Good luck and let us know what you decide!

Cheers,
Jenny

OTHER ADVISE

by STennant - 2007-07-25 08:07:30

I have had a total ablation and I am totally dependant on my pacer.... Please think twice before you have this done. I advise you to get a third opinion from the Cleveland Clinic..... Dr. Saliba is excellent.

Stop worrying

by roy haycock - 2007-08-28 08:08:52

I had my first ICD in 1999 and a replacement in Decmber 2005. Gradually during that time I became more and more dependent on it and was told last year that my heart had become" lazy "and the ICD was on 97 % of the time, thus I was totally dependent on it. This worried me at first, but I am now used to it and do not even think about it. I continue to be active and am looking forward to many more years of beneficial life. So stop worrying about this part of your problem and concentrate on finding a surgeon you trust to do the nxt part of the process. Good luck and remember that worry is the worst part of the process, so don't do it!.

works for me!

by shieldspf - 2007-09-19 05:09:48

I'm on my 6th pacemaker (I'm old and started when I was 37 and I run the damn battery down every 3-5 years), but I can assure you, being pacer dependent is something you just get used to. It seems creepy and scary at first, but you know, just how cool is it that we are living now, when we are actually LIVING!! In another time, I would be watching my grandchildren from heaven, and for awhile longer, I'd really like to watch them from down here. Take a deep breath, take the pacer, allow yourself some time to get used to the idea of it all, and then relax and then go on and live your life. Those of us with pacers can see the world better than others because of them.

You know you're wired when...

You need to be re-booted each morning.

Member Quotes

I live an extremely normal life now and my device does NOT hinder me in any way.