VVI modus pacing and heart failure, HELP!

heart failure

by Tracey_E - 2017-11-13 15:43:38

I don't think they really know. If there's been a study or numbers are out there, I haven't seen it. And I do watch because it's in the back of my mind also. We are the first generation to be paced long term so in a lot of ways we are the guinea pigs. It does happen, but not often. For every story you read of someone with pacing induced heart failure, there are thousands out there who have been paced for years with no issue. Who's to say if the heart would have developed heart failure even if not paced vs caused by the pacing. For most of us, the pacing isn't optional so I've never worried about it too much. Without it, I would have no quality of life, so it is what it is. 

I have congenital av block, so not the same as you. My heart has beat like yours since the day I was born. The doctor I had for many years brushed off my concern and questions, said when my EF started to drop, we'd switch to a CRT instead of the 2 lead I have now. The question was will it happen, not what will we do if/when it happens, but he never answered. I switched to a congenital specialist last year and he gave me more information. He said that yes it happens, but he did not consider it a primary concern for me. He said that if we are paced 5+ years with EF remains constant, that in his experience it will not be a problem. 

I do know that they've changed how they place leads over the years so that it is closer to the heart's natural conduction and therefore less stressful on the heart. You already have biventricular (CRT) which is also less stress on the heart. It sounds like your doctor has done everything possible to minimize your chances of heart failure. 

p.s. your English is better than a lot of native speakers!

Thank you TraceyE

by AnnemarieB - 2017-11-13 16:56:18

Hi TraceyE,

Thank you very, very much for your respond. (and thanks for the compliment for my English :) )

Indeed, my doctor did everything to help me. Not only with the biventriculair pacing, but he did also with the rythm disorders. But my heart is stubborn and wants to do her own thing. So, had several ablations, an open heart surgery in 2016, then last year another 2 ablations, then also developed asystoles, bradycardia, and tachycardia (with afib and aflutter, my common problem). It was my last resort option actually. All credits for my doctor, because he contacted a lot of other doctors and surgeons in other great and academic hospitals. I don't think i couldn't be in better hands, than his.

From what i've understood is that the lead for the left ventrical was in a good position, so i understand that this is a good thing! :) Didn't realise it also was positive for the decrese in changes of developing heart failure. Thanks!

Yes, you are so right when you said this: "We are the first generation to be paced long term so in a lot of ways we are the guinea pigs. It does happen, but not often. For every story you read of someone with pacing induced heart failure, there are thousands out there who have been paced for years with no issue. Who's to say if the heart would have developed heart failure even if not paced vs caused by the pacing. For most of us, the pacing isn't optional so I've never worried about it too much. Without it, I would have no quality of life, so it is what it is. "

You are a lot more positive then i am. And yes, it's true that pacing isn't optional and for me, i wouldn't have quality of life without it. 

Can you do everything? Like sports, other activities? I just found out that riding a bike is horrible. Really! HAs something to do with my PM sensor. My PM technician can't tweak it any better. But, walking isn't a problem. Nog a big problem though..

Hope to hear from you!

exercise

by Tracey_E - 2017-11-13 17:49:25

If you use the pacer to get your rate up when you exercise, bikes are a challenge. The sensors depend on movement, and when we ride a bike the chest does not move, so the pacer doesn't realize we are exercising. Are other activities better? Sensitivity settings can be adjusted so that it's more aggressive, but that won't help on a bike. 

I have been paced since 1994, so have had a few more years than you to get used to it! I feel great so it's easy to have a positive attitude. My EF has not changed at all. I am very active, there is nothing I want to do that I cannot. I run, lift weights, ski, hike, kayak... no limits! 

exercise

by AnnemarieB - 2017-11-14 08:50:05

Yes, indeed. Biking is a problem. I already found out, when tapping my pacemaker, my heartrate goes up. But it isn't an ideal situation when riding a bike. People would think im crazy while tapping my chest constantly while biking. :) I had 3 other settings recently and i think the last one is best for me. It's really amazing how it all works.

Nice to read that your EF didn't change over all those years! I am more optimistic now. Within 3 weeks im going on a ski holiday. After 2 years that i wasn't able to ski, it's the first time after the surgeries and my PM. Im very curious and excited how it will al go. How great that you can do all those things! Hope i will get back to that level too.

skiing

by Tracey_E - 2017-11-14 10:50:19

You should do fine skiing! I wasn't able to exercise before I was paced but my family is all avid skiers. My Christmas present the year I got the pacer was skies and lessons. So,I only know paced skiing :oP 

thnks

by AnnemarieB - 2017-11-15 09:34:34

Thank you TraceyE. I'll try and do my best :) Very excited to go. Paced skiing.. LOL