Joining the club

Pre-implant angst

by Theknotguy - 2018-09-09 14:16:22

There may not always be a solution but there is always hope.  Medical science is changing so rapidly now that what holds true for today doesn't hold true next week or the week after that.  Instead of the doctors telling you to go home and put your affairs in order, now they have some options.  

Medtronic has a pacemaker that has arrhythmia programs.  I have one and it does help.  It's not a cure for my afib problems but it's a lot better than life without it.  It may be something you can discuss with your cardiologists.  Maybe you won't need it after the AV node ablation but they can always implant that style of pacemaker and have it ready in case you need it in the future.  The programs can be turned on if needed.  Once again, something to discuss.  

Yeah, it's really hard when you wake up and find out your heart has betrayed you. I always use the analogy of my grandparents swam in the wrong gene pool.   Maybe not the nicest thing to say but it's something that is somewhat out of our control.  I didn't smoke, do heavy drinking, drugs, etc.  Exercised, watched my weight.  Had a discussion with my cardiologist who told me I was doing all the right things.  The next week I was in a six day coma and woke up with a pacemaker.  Really hard to get your mind around it when you've been told you were doing things right and everything still came out wrong.  

I can do everything I did before I got the pacemaker.  I can actually do more because I now have a regular heartbeat.  It truly is a help and not a hindrance and that's in spite of ongoing heart problems.  So while you may have some angst about getting a pacemaker, life does get back to "normal" afterwards.  I was telling a person the other day I had a pacemaker and he said he didn't believe me because I was a picture of health.  (Didn't say how bad the picture was, though.) Post pacemaker implant and I only think about it because I'm on the forum so much.  Otherwise it's out of mind.  Hopefully after the implant scar heals you won't think about yours either.  

My best wishes and I hope your implant recovery goes well.  

P.S. I got my pacemaker 4-Oct-2013.  October is a good month to get one.  Again, my best wishes.  

Joining the club

by pogerm1 - 2018-09-09 15:28:05

I know you said that you have had 2 ablations, I know someone who had 6 and then found Dr. Natalie at St. Davids in Texas and has been in NSR since, many go there and are finally healed, their AF gone.  Before I would go and have my node ablated i would check with Dr. Natalie, he has done many, many ablations.  Many docs that do ablations don't do a lot of them and are not that good.  Wishing you the best.

Joining the club

by AgentX86 - 2018-09-09 21:03:10

Well, I'm already a member of the very select club you're about to join. I had an AV ablation and pacemaker implanted last February.  My history is similar to yours; three ablations, countless cardioversions, and even a Maze procedure (which made things far worse) and I was still suffering from AFib and Aflutter (mostly the latter, recently). I can say that while the road since the AV ablation hasn't been perfectly smooth, I wouldn't go back for a minute.  It is so nice to never have to worry about the symptoms of AF/L again! The minor, in my case, concession is that the AV ablation leaves one with AV dyssynchrony.  Every once in a while I can feel it but it's nothing like the palpatations I had from AF/L - just a minor annoyance.  Of course, it leaves one pacemaker dependent, too, so make sure it's worth it for you.

I would ask your EP about a CRT pacemaker, even if you don't have cardiomyopathy now. A CRT pacemaker will avaoid pacemaker induced cardiomyopathy and heart failure.  As long as they're in there, do the complete job. If you want more information, you can send me a message and we can chat more but I'm very happy with the results.

As far as having something foreign in your body, would you not have your leg pinned if it were broken?  You'd rather have it amputated or left flopping around?  How about a cardiac stent?  Not wanting a pacemaker is normal, not wanting something that will save your life is, well, a (more than a) little nuts.  After what I went through with AF/L, I looked forward to it.

thanks

by Violet West - 2018-09-09 22:27:30

...for all your comments.

I'm sure I'll have more questions!

AV node ablation

by Shepheart - 2018-09-09 23:21:39

Hi Violet, 

I’ve had some similar stuff happening to me. I got my pacemaker 05/oct/2012. Tachybrady, SSS, Afib, aflutter, pacs, pvcs. Side affects to the meds were dizziness, brain fog, fatigue. Decided in favour of the AV node ablation, which I had on 28/06/2018. I feel better being off the meds but I still have trouble with balance and spacey feeling  but I think that may be an unrelated brain issue. I won’t know how effective the Ablation was for a few more weeks when I go for another pacemaker checkup. 

Do what you have to do to feel better. I just turned 64 and I’m focusing on quality of life right now. Just being in the present moment. 

You came to the right place

by PacedNRunning - 2018-09-10 17:13:31

I came here just like you. Nervous and scared. The heart is a vital organ and no one likes to have it messed with. I had a hard decision on getting a PM for exercise induced heart block. I could certainly live without but my exercise routine would be greatly affected. It then began to affect my everyday life but in small bits. I finally decided to get a PM and I’m glad I did. My doctor is very glad I did. I’m 17 days post and even though I’m still going through adjustments i feel pretty good about my decision. It was tough. I had many sleepless nights and anxiety. I’m only 46 so it made it very hard knowing I will need to have 4 more replacements at the least. The surgery was easy. Not as bad as I thought. I’m just looking forward to getting my settings right so I can be back to normal.