Long-termers

Welcome back

by Gemita - 2023-08-19 09:31:51

Hello Cramsay, nice to hear from a long termer.  Cannot compete with you since only on year 5 of pacing so still have replacement of device/leads to face.  Can I ask a question or two while you wait for other long termers to see your message and respond?

I see you have four leads, three abandoned, dead ones?   Would you ever consider getting these removed or are you now having to consider this? 

Over the 24 years of pacing, has your device been in roughly the same position (say on the left upper chest side) and have you ever experienced discomfort/obstruction to a vein from new leads being placed beside old leads?  

I know veins can get a bit congested and could cause some obstruction to blood flow as they try to feed more leads into the same vein.  I experienced a partial obstruction of the subclavian vein during my first implant and it wasn’t very pleasant.  

Hope otherwise you are doing well

Questions

by cramsay - 2023-08-19 11:13:24

Yes, that's right,  I'm looking for better/ alternative options beyond lead extraction.  

Similar experience

by Good Dog - 2023-08-19 11:50:44

Hi Cramsay! I have had my PM for 36 years and 8 months for complete heart block. I had my ventricular lead capped and replaced in 1995. It was recalled by the manufacturer. So I now have three leads. My atrial lead is the original and is still fully functional. The sensitivity is a little funky, but it still works. It is just a little difficult to adjust optimally. So my ventricular lead is about 28 years old and is functioning properly. 

The downside for me is that I have developed pacemaker syndrome (marginal HF) in recent years. My left ventricle is misshaped and therefore less efficient from the dyssynchrony over all these years. My EF is around 40%. I likely have about 6 months of life remaining on my current generator. So I am facing extraction of at least one lead and an upgrade to a 3-lead CRT. I am expecting lefy bundle branch placement of that third lead with the upgrade.

I have been very fortunate for all these years that I have had a pacemaker. I have had zero restrictions, no medications, and no significant arrhythmias. I have nothing but gratidude and praise for the technology! My life has been completely normal. I have to admit that while currently facing lead extraction it is quite terrifying to me. I've never fretted that much over any previous surgeries, but this one has me a bit spooked. I suppose I've read too much about the risks or maybe it is just my age. Perhaps it is the trouble-free nature of my experience with my pacemaker. Just not looking forward to this one for some reason. In any case; I am working on acceptance.

I have to tell you that I can attest to what it would be like without a PM. My grandfather was an PM recipient back in the early 60's when the technology was brand new. He had spend a large part of his later years in and out of 3rd degree heart block before a pacemaker was available. I remember as a youngster visiting him often when he was so sick in complete heart block and could not get out of bed. He spent much of his time in his late 60's and 70's sick and in bed back then. He finally got his life back when he got his PM implanted. My Dad and Uncles would take turns driving him back and forth to the hospital every year, year-and-a-half for a generator change in the beginning. He ended-up living to the ripe old age of 93.

Extraction

by cramsay - 2023-08-19 12:06:09

Yes, I'm also looking at extraction  🫤  and looking for better alternatives at the same time. 

I haven't been as complication free as you,  but i too am glad to have had these additional 24 yrs ive not have had without PM technology. 

Let's stay in touch. 

Good Dog

by piglet22 - 2023-08-21 07:15:10

36-years is an impressive length of time.

Interesting to hear about your grandfather.

Heart block must have been around for a very long time and must have been scary having to live with it with no real prospect of a cure until PMs came on the scene.

I daresay any people suffered and became invalided as a result, confined to bed.

Modern pacemakers are hugely complicated devices and need designers and manufacturers at the top of their game. Hardware specialists and software specialists.

Pacemaker with a phone app? Who would have thought that possible 40-years ago?

old timers

by Tracey_E - 2023-08-23 13:46:05

I will be paced 30 years next spring. I've got 3 leads now, 2 working and 1 capped. No space for more.

Both of my working leads are extremely stable, but I may still choose to extract and start over on my next replacement. Newer leads are smaller, thinner, mri-safe, placed differently than our old ones are so that it's easier on the heart. Odds of these two lasting through another battery are slim so we may change them out proactively. Or we may wait and hope they hold out until dual chamber leadless advances enough to work for me. I dunno. I've talked it over with my ep and we have not decided yet what is best. I've got 12-15 months left on this one so time to decide. 

Extraction has come a long way, it's nowhere near as dangerous as it was 10 years ago. The lasers have come a long way, and the number of specialized surgeons has increased. My ep's team does a lot of extractions, that's part of why I chose him. However, he said I'm high risk so there is another surgeon he knows with more experience with high risk extractions, so he will refer me out when the time comes. Not sure where you are, but the high risk guy is inTampa, my doc is Miami. The Tampa doc travels to Miami for patients of the Miami clinic. Cleveland and Mayo are also options. I would absolutely travel for someone very specialized in more complicated extractions. 

Very old leads doesn't necessarily mean high risk for extraction. Mine is for two reasons, one where they are placed and the scar tissue I have. Two, I've never had any sort of heart procedure other than the pacers. He said people who have had ablations and heart surgery have tougher hearts and therefore easier to extract. (that's from memory and paraphrasing, I think I got it right, I just remember never having had procedures makes me higher risk)

Rather than extract, they can move to the other side. That's a personal choice. Some doctors are more cautious about leaving old equipment in than others. Old school of thought was leave it alone. Now, most of them want it out, partly because it's easier than it used to be to get it out, and partly because of risk of leaving it in there. I've had one capped off lead since 2005 and it hasn't caused problems other than every single mammo they call me back for follow up. 

I will probably choose to extract when the time comes because it would be nice to be able to have an mri. Also, we think my subclavian is starting to get blocked because I have swelling in my left arm now. Hopefully extraction will help that. It's not bad enough to do anything about it, and it feels fine, but I noticed my watch got too tight but I hadn't gained weight. So, extraction is in my future, maybe next year, maybe a few more years down the road. I feel like every year I wait, the lasers get better and the surgeons get more experience. 

Old leads

by cramsay - 2023-08-23 14:42:38

Hey Tracey,

Happy for you that you have time.  Not so much in my case.

I already plan to go wherever i need to for the best surgeon, but since all of us long timers have as much scar tissue as you,  we're all fairly high risk despite what they may be telling you, so I'm being cautious with extraction.  It's prudent. 

I'm leaning towards a wireless D-C PM from Abbott (just FDA approved last month.) 

Thanks for sharing, I'm glad this isn't an issue for you.  best of luck.

stay in touch!

by Tracey_E - 2023-08-23 15:29:07

I'm not familiar with that one. Do you have a single lead pacer? The wireless options are a lot better for single chamber pacing. Let me know what you decide and how it goes. 

No

by cramsay - 2023-08-23 15:36:58

Nope , two leads,  that's what my post was about.  I have 4 now. 

I have a Dual-Chamber PM.

ah

by Tracey_E - 2023-08-24 10:00:39

When you said 3 kaput and 1 working, I wondered if that meant single lead.  Now I'm even more intrigued about the wireless D-C.