My Experience Switching from a Dual Lead to a Leadless Pacemaker

Hey everyone! Abi here, I know there are quite a few members currently considering switching from a traditional pacemaker to a leadless. I think I am the first one to make the change so I thought I would post about my experience and the process. This is going to be quite long though.

TLDR: It is fine. It makes more sense to get the first time to avoid the scars and the healing time, but it limits cardio and takes more effort and expertise to program.

Background: 

So I thought I should start off explaining why I have a pacemaker number 1 and why I needed to switch to a leadless pacemaker number 2.

Currently I am a 24 year old female and this is my 6th pacemaker, and my first leadless. 

I was born with a significant vsd, they repaired it when I was a baby but during the repair they severed my AV node giving me bradycardia. I am considered fully pacemaker dependent. I have had to have many pacemakers during my childhood. I got my first replacement when I was 3 because the battery died, another when I was 5 when I fell and broke a wire, when I was 9 my battery died again and they put in my first intravenous pacemaker, in 2017 when I was 17 and I broke another wire. They did a lead extraction and replaced the whole system. Just this past January (2024) I got my leadless pacemaker.

Something to keep in mind about all of this if you are considering switching to a leadless pacemaker is that I was not a perfect candidate for it. I needed to switch to a leadless because of some extenuating circumstances involving my wires. Basically when they put my last pacemaker in 2017 we think the ventricle wire’s position was bad and subsequently my ventricle lead was holding open my tricuspid valve. This is causing severe tricuspid regurgitation and a cascading lot of issues. Unfortunately we only caught this because my liver started failing due to the pressure change over a prolonged period of time. 

I am going to explain the whole situation and what happened in case it is relevant to someone else here since the end result is that all of this was due to my pacemaker but feel free to skip ahead if you want. In May 2023 I had a lot of chest pain and ended up in the ER and when they gave me a chest CT my liver was so big it showed up on the scan. They had me do a cardiac stress test, which wasn't to bad since when you have a pacemaker they just give you a chemical that makes your heart rate increase, but the stress test found no heart issues. I spent the next 8 months getting a litany of tests trying to figure out what was going on with my liver. After my first liver doc gave up and sent me to a different specialist at a bigger medical center we finally started making some progress because the first thing he did was set me up with a new/different EP. I got a biopsy, liver venous mapping and pressure that showed elevated right atrial pressure. I then got a right heart cath done which ended up showing results that indicate tricuspid regurgitation and during the procedure the surgeon/congenital heart specialist looked at an echo I had done in April with my previous EP and noticed that I had severe tricuspid regurgitation (not easy to see on the scan due to the lead in the way and the angel though. After that my new EP, the Congenital Heart specialist and my liver doc all met and came up with an action plan. 

The first step of which was to get my pacemaker leads removed so that they wouldn't be holding my tricuspid open anymore. My EP also suggested I get a leadless so that no wires would be in the way for the likely situation that I will need a valve replacement for my tricuspid valve. The surgery would have been much more dangerous to go around the tricuspid valve to get to my ventricle especially with some bleeding issues I have been having with my liver cirrhosis. So my EP changed my PM settings to make sure I wasn't being significantly atrial paced, and after 2 weeks right before the surgery we decided to go with the medtronic mirca leadless pacemaker. 

—-- Getting the Leadless PM— 

So I had a laser lead extraction and they put in my new leadless PM.There were no significant complications with the lead extraction though, the recovery was quite painful. One of my femoral arteries had something that prevented them from using it so they ended up having to put all the equipment up one. This was quite painful for my leg and also took forever to heal since it kept reopening with all the movement in the groin area. The leadless PM also had to go up that same leg which I was informed was where the majority of the stress came from. A medtronic tech stopped by the evening after my surgery and ran a set of tests to make sure it was working fine. He had also intended to lower the lower limit of the PM from 60 to 50, which I refused (this saved me a lot of hardship later on) with the intent of waiting to change it till my follow up with my EP. The EP resident that helped with my surgery stopped by and gave me a general run down of what happened later that evening as well. I was in a lot of pain as I mentioned, but I believe most of this was due to my hospital bed not being turned on/inflated causing some minor pressure injuries. Though lead extraction are alos quite painful, don't let anyone try and tell you otherwise.

I spent one night at the hospital and was given the option of a second due to the significant pain I was in but ended up opting to go home to hopefully get better sleep. Recovery was painful but fairly normal from there. My groin from the catheter kept reopening but only the top layer of skin so it was gross and hurt a bit but not dangerous. It didn't full heal until about 6 weeks later. My other incisions healed well and they generally hurt less than my previous lead extraction. I remember feeling pain throughout my chest and in my veins before but not this time. I think the previous pain was likely the new wires aggravating the injuries upon reflection. I was able to do most tasks myself by the 4th day. And was able to go back to work the following Monday. However, I found I was getting incredibly winded evening going just a few steps or down 6 stairs. I did a digital send and called the EP help line the hospital had given me. He told me my PM wasn't sensing/pacing correctly and was instead just pacing me on my lower limit 60% of the time (thank goodness I didn't let them change it to 50). He sent a message over to my EP and my EPs office got me an emergency appointment that week.

—Leadless PM Adjustment—

I have had many PM adjustment appointments before but I had never had anything quite like this. When I got to my EPs office my usual tech brought me back to a room that had a whole team in it. There were 2 medtronic reps and other tech from the office. They also asked my permission and called in 2 medtronic programming specialists. They hooked my up to a EKG and the PM programer and as a team looked at the waves of each beat of my heart. Apparently the medtronic micra has 3 vectors it can use and combine to track/hear your sinuous rhythm to pace the heart using what they called ballistic technology. They had me do a ton of tests, exercising, laying down, standing, sitting, ect while analyzing my heart beat by beat to set new parameters and find the best combination of vectors to use for my micra. I was with all 6 of them for about 4 hours. It was really interesting but I couldn't tell you much about the issues as everything was extremely technical. We think that some of the problems the micra was having was due to the dilation of my heart and the noise from my severe tricuspid regurgitation. Again I was not a perfect candidate. But thankfully by the end we were able to change the setting in a way where I could walk around normally again. Everyone was super nice and helpful and the rep even gave me a demo replica of my micra. (I'll attach a photo if I can figure out how) They also had my get a chest xray just in case something had gotten out of place but it came back fine.

I did end up needing more adjustments by my follow up appointment a few weeks later though. I had noticed that now every time I went up the 6 stair in my house my heart would jump to ~110 and stay there for about 5 to 10 min evening while I was sitting or laying down. The follow up appointment was a lot simpler though it still took about 3 hours. It was just my usual tech and one of the medtronic reps and they ended up just lowering the rate responsiveness and changing the time frame it waits for my heart to reduce after exercise. 

I have not had any other major issues with my leadless yet. The digital sends are pretty straight forward though they are not automatic like my Saint Judes's were. There is an easy phone app for it and my PM came with a book about its specific restrictions there aren't many just Ham radio and arch welding. Overall it is less restricting than my previous one though I think my built in fear of magnets will always have me requesting a pat down and refusing to go through metal detectors though my PM says they are fine. I do have to get a cardiac MRI soon so we will see how that goes. My abandoned leads are supposed to be a greater risk than my PM but I can't say that I am not worried. Let me know if you have any specific questions, I would be happy to try and answer.

General Differences/Opinions: 

Changing the settings is far more complex and time consuming.

Recovery is much easier generally.

My base setting out of the hospital were far worse than a standard PM

Doing exercise feels odd, I think I can feel the de-synchronization that happens at 120+ bmp.

The rate responsiveness is not as good/accurate/smooth.

I had a lot more fear about dislodging it especially at first (I was scared everytime I coughed or sneezed for weeks)

The guide that came with it suggests that it is more protected than my old one against magnets and such.

It is far smaller than my old dual lead to a surprising amount

I am worried about running out of room inside my heart but my EP said worst comes to worst we could always put a traditional back in. And that they have clinically proven that 3 can fit in someones heart at once. 

There is a lot less risk of infection.

Overall:

I think I still prefer a dual lead to the leadless overall, the worse rate responsiveness is noticeable and annoying to me. While my dual lead would smoothly transition from relaxation to exercise my Micra seems to just jump up and down back down really quickly. If it was my first PM and/or I was old it would probably be a better fit. The lack of visible scars, lower risk of infection and fewer complication risks are all huge benefits. As someone who has had 3 PM lead complications (2 broken wires and the whole tricuspid mess I am in the middle of) I think leadless is far safer. If you like to work out and live a super active life it might not be the best fit. As someone who has had a PM my whole life I notice even the smallest changes in heart rate and rhythm and the leadless just isn't as comfortable or smooth in my opinion. My EP told me not to do any heavy cardio with my leadless, but it hasn't really prevented me from anything. I am super sick in general right now with my tricuspid regurgitation and liver failure though so I don't have a super clear picture of it yet.

Again let me know if you have any specific questions. I hope this is helpful to someone out there :)


11 Comments

WOW!

by USMC-Pacer - 2024-03-20 15:26:54

Great write up! I'm wondering why you can't do heavy cardio. Is that just while you are healing? Other than that, I'm hoping your valve has returned to normal and your liver can heal.. that's the most important. 

I love the concept of the leadless, but I doubt I'd ever be a candidate with CRT from PICM, but who knows if that resolves and with technology.

Best of luck and God Bless!

wow

by Tracey_E - 2024-03-20 16:09:08

Thanks so much for the update and all of the information! Fingers crossed the regurgitation and liver improve now. What an ordeal you've been through!

USMC-Pacer

by Buzbuz9 - 2024-03-20 16:26:47

I believe I am not supposed to do heavy cardio for 2 main reasons. My heart is under a lot of pressure from the prolonged tricuspid regurgitation so I need to take it easy, and because the leadless pacemaker can only go up to about 120-130 bmp. It also has a de-synchronization problem between the artium and ventricle chambers at higher rates starting around 110 bpm. It simply won't really be able to allow you to do heavy cardio which would be 140-180 bmp for someone my age. 

Thank you for the information

by Penguin - 2024-03-20 17:56:55

Thank you for this post Buzbuzg.  Do you have a diagnosis for the liver issues and if so will treatment for the prolonged tricuspid regurgitation reverse them? 

You've really been through it haven't you?  I wouldn't be exercising much at all in your shoes until I knew that all was well. Please take it easy and thank you so much for the frank and informative post.

Sending love & best wishes

 

 

Wow

by Angry Sparrow - 2024-03-20 23:12:22

Great Report thank you, I am sure in the near future Newbies will gain a lot of strength through your well written report.

You are brave and I thNk you on behalf of the people who will gain from your story.

 

My goodness

by piglet22 - 2024-03-21 07:13:42

That's what I call going through the mill.

Your bravery having to face all the interventions and your medics for keeping you going.

Thank you for posting your experiences and showing that you can overcome these problems.

Good luck and good health with your new device.

You provided a great service here. THANK YOU!

by Good Dog - 2024-03-21 08:51:05

You are a real trooper! I truly appreciate your contribution that I know will help many, many people. I read your post with great interest even though I am not a candidate. I believe that you are a real pioneer as technology advances it will serve to transform lives for the better for so many PM patients in the future.

I had the impression that they extracted all of your old leads as you indicated that you had a whole new system. Perhaps I missed something, but it seemed that you still had some old leads remaining? In any case, I wish you nothing, but the very best through your journey as you live a long, happy and meaningful life into old age. You've already accomplished the meaningful part of it! Thanks again!

Sincerely,

Dave

Inspirational

by SeenBetterDays - 2024-03-21 17:47:12

Hi BuzBuzg

Thanks so much for sharing your experience. You have been through so much at such a young age and have shown incredible strength and resilience. It's helpful to identify the pros and cons of the leadless pacemaker as this is likely to become more widely available as time goes by. I'm sorry that there are aspects of the new device that are still causing you frustration but I am sure that having all of the other hardware extracted will benefit your heart valve and hopefully lead to improved liver function. Thanks for your generosity in sharing your story for the benefit of others. Sending you much love..

Rebecca x

Thank you BuzBuz

by Gemita - 2024-03-23 14:20:49

Buzbuz,

It was so helpful to receive a post on your experience with the leadless pacemaker.  For someone so young, you have certainly gone through a great deal and learnt a lot about pacing.  I also see you have lived your life to the full resulting in a broken lead or two!

I was concerned to read about your severe triscupid regurgitation, elevated right atrial pressure and of course the enlarged liver and I do hope that together with your doctors, you can find the safest way forward.

The groin area and a femoral artery/vein wound as I know only too well, can be painful and take some time to heal and for any bruising to finally disperse.  I suffered a pseudo aneurysm after my femoral artery puncture during an EP Study procedure prior to getting a pacemaker.  Had to spend five days in hospital and had to stop anticoaglation to allow wound healing.

Your comments “As someone who has had a PM my whole life I notice even the smallest changes in heart rate and rhythm and the leadless just isn't as comfortable or as smooth in my opinion”.  Those comments are exceedingly valuable to me as an arrhythmia sufferer who is always looking for a pacemaker that can help maintain a smooth, regular rhythm - a tall order for any pacemaker pacing in the presence of an arrhythmia.  I do appreciate the Micra leadless pacemaker is still in its infancy but I hope you will be able to quickly overcome any shortcomings and get those settings fine tuned to suit you and your life style very soon.

Take good care and thank you for spending so much time trying to help other members who might be considering leadless pacing.

Very helpful post and timely

by Figallegro - 2024-03-23 21:06:51

Thank you Buzbuzg. Your post helped settle a few questions in my mind about wireless. I had my PM and Leads replaced 2/6/24. During lead removal, boith leads broke and took longer to fully remove all. in the process, my Tricuspid Valve was torn. I am scheduled for valve replacement 4/2/24 and the lead goping through tricuspid will have to be relocated outside the heart. I was hoping for a leadless PM, but learned they can onply be used for single lead patients. With the extensive needed adjustments, I may not be up to the challenge and am more settled now with regular leads after reading your message. It is hard to understand why it is typical for leads to be run through ther tricuspid valve with the risk of regurgitation. I have gotten continually short of the last two years and it may been from regurgitation. Thanks again for your post.

Tony. 

Getting one in June

by Cat111 - 2024-03-31 16:06:48

Hi - I found this very interesting - I am getting a dual chamber Abbott and extraction of the newer broken leads I have.  I have the originals but they think they are far too old to try to remove. I have never had anyone discuss the extraction, so I found that interesting.  So you found post getting leads more painful than extracting them?  How was the pocket for healing where the pacer originally was?  I read with interest about the femoral vein for the cathedor. I do worry about the healing time on this.  I plan to fly 48 hours after my surgery (only an hour) but hope that things hold together. I am getting a dual one and no one where I live service them so I will be sure to get everything checked out before leaving. The one good thing is I will be at the Cleveland Clinic and so far the team seems outstanding.  How soon before you did moderate exercise?  I wish you all the best with all your issues and thank you for posting.  Cat

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