30+ year old leads?

Lead extraction

by Good Dog - 2022-08-12 21:17:11

I am in a similar situation as you! I have 35+ year old leads and I am also recently diagnosed with PM induced cardiomyopathy. Back somewhere around 2013 before my HF was diagnosed my leads were 25+ years old and my EP (at the time) was having a problem with sensing of my atrial lead. He also recognized that my leads were getting really old. So my Cardiologist decided I should go to the Cleveland Clinic for a consult relative to my options including extraction. The consulting EP explained that they will not do an extraction and a lead replacement unless it is absolutely necessary. So it was his recommendation to simply replace the generator. His rational was that the risks of extraction are the reason that they choose not to replace leads as long as they are functional. He explained that the complication rate is about 2% at the Clinic and sometimes as high as 4% elsewhere. The mortality risk is generally 1% or slightly less. So while that may sound low, when compared to many other procedures it is actually quite high. The consulting Doc further explained that they try to avoid unnecessary risks when the leads are functional and battery life is not minimized due to a lead problem, because in reality, the leads may well outlast the natural life of the patient.

So I recently changed doctors and now see an EP at the Clinic, their philosophy has not changed much, but based upon what I've been reading in a Clinic podcast transcript from July of last year (relative to leads and lead management), there seems to be a transition underway to a less conservative approach especially in younger patients and with dysfunctional leads that are not extremely old. I have to say that this transcript should be mandatory reading for anyone with a PM. It provides some important insight. Dr. Bruce Wilkoff (identified in the trranscript) is considered the guru of lead extraction at the clinic. I'll attach a link to the transcript here:

 https://my.clevelandclinic.org/podcasts/cardiac-consult/lead-management

My current EP is the head of research and he advised me that he was once very aggressive early in his career with lead extractions, but has become much more conservative over time. They perform thousands at the clinic. He explained that when you rupture a superior vena cava in a patient, it will do that to you (make you more conservative-I am paraphrasing). So my point is that I can identify with your situation very well. Quite frankly, my HF is not syptomatic and my last EF was around 40%. I have had two echo's in the past year and my HF does not seem to be progressing. I have an appointment with my Doc in less than a month to discuss my situation further and I am expecting it will include his recommendation. Frankly, if I can aviod a lead extraction, I will choose to do that. We will see if my leads can outlast me. I understand that everyone has their own opinion and many may have one that differs from mine. However, here is the thing; I've lost two friends recently that were much younger than me that died unexpectedly. One had a minor surgery that did not entail any major risks and he died in the hospital from a blood clot that night. The other died from a blood clot after a broken leg. He was in perfect health and had just turned 50. My 73 year old uncle died at the Cleveland Clinic after a simple catheter procedure to remove a growth in his bladder. The Doc accidently punctured his bladder. He was otherwise in good health. So my point is, these kind of things have convinced me that it is not wise to take any risks that I do not need to take. Make no mistake; if my doc advises that I must have the leads extracted so that they can implant a new CRT, I will listen to my Doc. That is why I selected him! However, if he gives me a choice, I likely won't choose an extraction. I'll choose a new generator and keep moving with my life. I am currently getting 8-9 years of life out of these old leads. Although old as hell, and yes, the sensitivity is a little touchy, but they are still fully functional.

So that is my situation and those are my thoughts. I wish I could be more helpful. If you want to discuss further or I can help in any other way please don't hesitate to PM me. 

Sincerely,

Dave

Inspiring

by Lavender - 2022-08-12 21:41:52

You guys with such old leads! Well, that should put some newbies at ease just knowing that you have a long history with pacemakers! I'm older, so I keep telling repairmen there's no way I need the 30 year guarantees! Love reading about your experiences! Inspiring!

28 and counting

by Tracey_E - 2022-08-13 10:43:18

I have had a similar experience to Dave, ep is very conservative about extracting. I have one working lead that's 28 years old. My ep feels if it ain't broke, don't fix it. Newer leads are easy to extract, very old leads are higher risk.

I had one lead replaced in 2010, there was room so they added rather than extracting. I had one doctor who wanted to extract but I said I wanted to put it off if I could. If my next set lasts as long as this set, I can get by with only extracting once in my lifetime. When I explained it that way, the doctor agreed with my reasoning. Ten years later and that other lead is still going strong and I still haven't needed extraction. 

I'm dependent also. Leads don't just suddenly stop working. They will gradually start taking more and more juice to get the signal through so there will be plenty of notice. Five years ago he told me this battery will probably outlast my leads, but the numbers on my leads have remained steady. 

I see an ep in a large adult congenital clinic so they do a lot of extractions. His team has had two patients end up with OHS due to complications, both patients survived. I didn't ask how many they've done, but it's hundreds every year. 

I would highly recommend seeking out a world renowned clinic like Mayo or Cleveland, or an adult congenital clinic. I drive a bit to get to mine but it's only once a year and well worth it to see someone who sees patients paced for a lifetime all day long. In most practices, we are the rare exception. The clinics are getting more common as many of us who are congenital are living long (healthy!) lives. I originally just went for a consult as I loved my cardiologist I'd seen for 20 years, but I was blown away by the difference.

https://www.achaheart.org/your-heart/resources/clinic-directory/

No so old leads

by Julros - 2022-08-14 02:47:34

I was diagnosed with a progressive cardiomyopathy and am at risk for sudden cardiac death, so I am getting an upgrade from my pacer placed 3 years ago to a an ICD. My doctor has reccomended extracting my RV lead because if it is left in place I can never have another MRI, plus there is the risk of tricuspid valve regurgitation because of an additonal crossing the vavle. I am having this done at a major teaching hospital with a highly experienced EP, via laser extraction. There will be a cardiac surgeon standing by in case of complications. 

Julros

by Good Dog - 2022-08-14 07:35:16

I am sorry to hear about the problems you are encountering, but it does sound like you have the benefit of being under great care. My current and previous doc's all advised that we should never have more than 2 leads through the tricuspid valve. With the short duration that your RV lead has been in place, it should be extracted easily with minimal risk. Whenever and whereever they extract leads, there is always a Cardiothoracic Surgeon at the ready in case of complications. It certainly isn't something you need to be concerned about, but it is always good to know that you are under the best and most competent of care! Ultimately, you should feel good in knowing that you have done everything to be able to go on and lead a long and happy life.

I wish you the very best and hope that you will return here to let us know how you are feeling in your recovery.

Sincerely,

Dave

Putting Newbies at ease

by jonnypacker - 2022-08-14 13:28:22

In response to Lavender's comment...to put any newbies at ease...I've had pacemaker since I was 3...which was 1982.  I played baseball throughout my youth.  I'm 43 now and have coached my son's baseball teams. I go on bike rides, paddleboard, skateboard, gym, throw the football/baseball around. Even race my kids and beat them! 😂 I enjoy a couple cold beers or a glass of wine a couple times a week. I have lived a very normal life and am very very grateful for this device! Looking forward to getting this bad boy replaced in the next couple weeks so I can return to normal living. This ERI mode is no fun.

Jonnypacker

by Good Dog - 2022-08-14 15:26:04

Just an FYI to let you know that I think you have a really great and inspirational message for the new younger folks that post here. Growing-up with a PM from age 3 and all of the years of experience under your belt, you have a lot to offer! I hope you will follow the posts and continue to contribute in the future.

THANKS! I am sure that your generator change will be "a piece of cake" for you, but I wish you the best!

BTW: I noticed that your implant date (in your profile) was 2010. Is that correct? If so, you are getting some serious battery life?

Sincerely,

Dave

Dave

by Julros - 2022-08-15 01:36:23

Thank you for your kind words, Dave. I feel that I am in good hands for my cardiac care. I had some negative experiences with my original implant, but have switched to a team that seems much more competent and caring. What more could you ask for? Upgrade is scheduled for September 1, and I will post about my experience. They are also planning on doing a venoplasty because my subclavian vein is narrowed (stenosed) around my subclavian vein. Who knows, I may wake up with a device on the opposite side! I sure wish I could watch. 

I do

by dwelch - 2022-09-03 20:44:57

I have four leads one active lead is 34 years old the other 34 year old the doctor broke on the first replacement 7 years later, so I have a lead that much younger, then I got my fourth a handful of years ago when I got a biventrical.   There is nothing wrong with my old leads and no reason to change them out.   They are working well.  I am fortunate enough in one sense to be a big guy and had room for four leads on one side.  

Aint broke dont fix it is what my doctors plural went with.