Pacemaker

Hi , my name is Derik Julian I am a 32 year old male from Northern California. I have had aortic valve replacement twice . Once when I was 18 and once when I was 26 . When I got the last one I had to get a pacemaker due to failure . I am now going to be getting device replacement around December 2018 . I am woundering if anyone can comfort me about a second time or third time replacement my worries are huge as I have twin baby girls and a boy due October 1 2018 . And they need there daddy . So please any one that has gone through a second or beyond device surgery reach out . Thank you very much and I am excited to be apart of this group . My first time talking with anyone really about my condition . 


6 Comments

Welcome to the Club, Derik!

by NiceNiecey - 2018-09-14 19:38:46

You need this group!  I am in another time zone presently working on another continent so I’m getting to you before others can!  You will find that there are multiple people on this site that have had numerous PM replacements.  Many got their first PMs as children and every several years, they need to have a replacement - just like you.  I have kids your age and only got my first device less than 5 years ago but I’m planning on a replacement in another 2-3 years.  I’m not the ideal person to address your questions but I wanted to respond ASAP because I know how anxious I was when I made my first post.  I just wanted someone to reply, ANYONE! This is a caring and knowledgeable group of people and they will offer you their insightful comments.  In the meantime, know that we’ve come a long way in the field of cardiology.  Your children need their father for sure and your wife needs her husband! Take it a day at a time.  Live a healthy life (weight control, don’t smoke, get some daily exercise) so you don’t complicate things.  I think you’ll do great!

Niecey

Pacemaker replacement

by LondonAndy - 2018-09-15 03:12:14

I had a surgical complication when they did my mechanical aortic valve too, and so have a pacemaker and am 100% paced.  That was only 4 years ago, so I haven't had to get it replaced yet.  But I am not worried about it - pacemaker operations are incredibly common, at over 1 million worldwide every year, and take only 1.5 hours or less. Your wires are young, so it should be a "box change" only.  They will know the precautions to take during the changeover, and your new one may well have better rate response handling or other improvements.  I think of mine as just another gadget, and when you got yours 6 years ago we were on the iPhone 5, and now you are going to get an iPacemaker 10! 

Replacement

by Buzbuz9 - 2018-09-15 05:38:21

Hi Derik, just wanted to reach out, my name is Abi.

I am 18, and on my 7th pacemaker(lots of issues due to growing as a kid don't worry), and I would like to reassure you that you do not need to worry at all about a simple replacement. Is an extremely low risk surgery, the incision area heals very quickly, and in most cases you get to leave the hospital the next day. The pain isn't bad at all, and it is a much easier adjustment then your first pacemaker, especially since you had a valve replacement surgery and complications. 

My only recommendation would be to talk to your cardiologist about what type of pacemaker (generator) you should get, I switched from Medtronic to St Jude on my last replacement surgery, and apparently my cardiologists isn't very well-versed with st. Jude pacemakers, so I would check with your cardiologists to see what they work best with. 

And congratulations on your twins, and the new addition to your family :)

piece of cake

by Tracey_E - 2018-09-15 09:41:02

Replacements are easier than anything else you've been through, nothing to it. As long as your leads are good, they'll leave them alone and go in the same place. Most of the pain the first time was making the pocket, most of the restrictions were the new lead. When I got my last one, I was home by noon answering work emails. 

I got my first pacer before kids, my girls are both off in college now and I'm on my 5th device. The older one loves to run, we meet for races and are currently training for Disney's Marathon Weekend. We send each other screenshots of our garmin downloads and track each others training.  My youngest is the adventurous one. Last trip to see her we were hiking and ziplining, next up is canyoneering. No one, especially my kids, looks at me and sees a heart patient. 

Good luck with the newest addition to your family!  

 

Thank you !

by Derikjulian - 2018-09-15 13:24:26

Thank you very much everyone . I also have the option to place behind the muscle . So I don’t have this lump anymore . and abi you are very brave than you everyone that has responded means a lot to me . 

Placement

by Tracey_E - 2018-09-15 20:40:23

If the location is bothering you or it gets in your way, now is the time to bring it up! They can go lower and deeper, or put it between the pectorals. Your build will determine the best choice. My first 4 were under the breast, last one they moved it under the pectoral. My ep didn’t want to mess with it so he had a plastic surgeon do that part. You’ll be a little more sore after if they change to pocket but if it gets in your way it’s well worth it to move it. 

You know you're wired when...

You can feel your fingers and toes again.

Member Quotes

My quality of life is better already and I know it will extend my lifespan.