HELP...I'm new to this

Hi All,
I'm Paul 58 years old and new here.
I need help and advice from those of you who have already been through this. To date, I have had 5 Ablations, the last two in July of 2008, and I still have severe incidents of atrial fibrillation several times an hour. It stops me in my cold tracks and is usually very uncomfortable and sometimes painful. It is becoming more and more difficult for me to perform my daily work. My cardiologist says that my heart is badly scared for as of yet unknown heart disease, same condition my mother has. Now I am told that I will require a pacemaker after a catheter ablation of the atrioventricular node (AV node),
I work in the Avionics industry and I do Environmental Stress Screening of electronic systems over temperature extremes. I know how often components can fail and the catastrophic results caused by such failures.
I have very profound concerns about my life becoming 100% dependent upon a pacemaker 100% of the time.
Please help me put my concerns and fears at ease and tell me how you cope with the depression and thoughts of impending death or worse.

6 Comments

Answer

by mikki14 - 2008-12-21 03:12:04

Hi there, I sent you a private message. Hope to hear from you as well ;-). Bye for now, Misa

New---

by SMITTY - 2008-12-21 04:12:55

Welcome to the Pacemaker Club.

After thinking about your message I think I can understand your concerns. But from what I have learned about pacemakers over the last 8 years is that sure there are some failures, but those incidents are extremely low. I have read failure rate numbers in the 0.1% range.

Considering your heart problem, I have to say your probability of dying without a pacemaker is much higher that with one. I got my pacemaker for sinus node dysfunction, or SSS as some doctors call it and it has not been a fun trip. I've had many problem with the thing, but none that could be attributed to the PM operation. I have had episodes of A-Fib a few times, although only one was really bad, and from I have been told the fact that I had a PM probably saved my life. As my A-Fib was going away, my heart went into a dangerously low rate and I passed out. It is only speculation that my heart would have quit beating (this does happen with A-Fib occasionally) but the PM took over and gave me stable heart rhythm and I regained consciousness in about 10 minutes.

So I can assure you I would have a pacemaker if I was told that one was necessary to protect me from more episodes of A-Fib.

Good luck with your decision.

Smitty

AF and AV node ablation

by pete - 2008-12-22 02:12:09

Hi Paul , I Have AF and I have a pacemaker and AV node ablation. Dont worry its the best thing that can happen to you. If you have any specific queries contact me direct at pcounsell@btinternet.com

I had only 2 abaltions

by janetinak - 2008-12-22 12:12:13

& am 100% PM dependent since 2000. I don't miss the permanent AFib & very fast rate & being SOB/fatigued. I did get a lot of reassurances from my EP & his Advanced Nurse Practioner. And they were right. I really worried about the PM stopping & there I'd be--dead!! But it doesn't work that way. When after a few years my PM needed replacement it went into a conservation type mode & did not increase my heart rate when I did something (had been doing that fine until then) & I got SOB, but never as bad as pre-PM. They got me a new Pm & all is good again. Just get frequent PM checks as recommended by your doc & hopefully it will be fine.

Good luck,

Janet

Hi Paul!

by jennikatz - 2008-12-22 12:12:37

Hi Paul! I'm totally new here as well!

Wow! 5 ablations! I totally understand how you're feeling! Well, aside from 5 ablations. I was implanted with a pacer in '93 for sick sinus syndrome, which did not leave me dependant. However, I started experiencing tachy rates last year. SSS morphs into brady-tachy syndrome sometimes. Since I already had the pacer, it recorded everything that was going on. After the episode that hit 280 bpm for 11 minutes, I had an ablation. I know how scary these episodes are. I know I felt like I just wanted to close my eyes and die. Are you active in trying to break the rhythm when it happens? Has your doctor given you some methods that sometimes break it? I'm assuming that you've had an EP study? My ablation was for the AV node. I ended up having AVNRT. Fast forward a couple of months and I was feeling kinda wierd... Like "extra power" in my heart beats. Turns out, I'm 100% dependant now. They had to fix some of my settings to give my heart a chance to beat on it's own if it could because sometimes it would pace when I had a natural beat. But, I pretty much pace all the time now. I've had the pacer for 15 years and never really thought that much about it. I even would wonder if I really even needed it. Now, I know I need it. My dependancy is a result of my ablation. I tell myself over and over that the benefits outweighed the risks. I knew dependancy was a risk; but now, I don't have the scary tachy episodes. I've always hit a "depression" when I've had my heart worked on. I totally understand how scary it is to think that you are dependant on a high tech metal box in your chest. My relationship with my doctor has helped tremendously. I trust him more than anyone on this earth to take care of me. I have his cell in my contact list! I would say that kind of trust is essential. I will say that they keep a mighty good check on my battery. Your doc probably will too. You've probably asked him lots of questions, but here are some that you may not have thought of... First, what manufacturer does he use? I'm on a Medtronic. I have a Carelink monitor that I use every 3 months in between visits. It checks for events and battery life. Also, I can use it whenever I'm feeling funny. It's such a great comfort to be able to plug up and then have them call me to tell me I'm okay. Also, how does he handle the pacers when they're getting to the end of battery? I am in school to be a cardiovascular tech and I'm concentrating in EP. Most of the patients that come in for change-outs are ERI which stands for "elective replacement indicator" which means that it's close to the end of the battery life and they're going ahead and changing it out. Some come in as EOL which stands for "end of life" and these patients usually are not dependant.

I know it's a huge weight on your mind. Just know that the pacemaker is not as scary as what you've been experiencing with the AF. It's innerving. I'm dealing with dependancy one day at a time and I take a great comfort in no more tachy episodes.

And, funny enough, my husband is in avionics!! Boy do we have fun comparing the electrical systems... Good luck; and if you want to talk more about it, feel free...

Thanks for Responding!

by paba1950 - 2008-12-23 10:12:02

Please accept my HEART felt appreciation for your kind and timly replys to my first posting.
It is helpful knowing that I am not the only person going through this experience.
May GOD bless you all and have a Safe Happy and Healthy Holiday!
Paul

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