Ive had so many pacemakers Ive lost count

Hi all, 

Im 57 years old and had my first pacemaker implanted at age 15 (in 1975) due to 3rd degree congenital Heart Block, so I basically didnt beat much faster than 50 and that was pushing it...  The day my pulse dropped to 19beats they figured it was time to do something about it...  Fortunately by then you didnt have to carry your pacemaker around like a suitcase and they had reduced the size from a tobacco tin to a pretty hefty paperweight with 4 watch batteries in it, that only lasted 2 years if you were lucky.  So I have lost count of the number of pacemakers I have had inserted and my doctor comments that Im like a spagetti factory in there with all the abandoned leads on the outside and inside of the heart.   So with all the advancements in technology they kept giving me new beaut pacemakers with all the bells and whistles - one I even had to move my arm up and down to make it go faster... and with the new pacemakers came new leads.    

The last 20 years have been the best with Medtronic dual chamber pacemakers, and both have lasted just over 10 years.. so Im at EOL at present with less than a month or maybe 10 months of battery left, before I go into safety mode.  I still have the orignal leads in and Im hoping and praying that they will use those again and not have to extract or squeeze another set in.   

So my question to those of you out there who have multiple pacemakers and more recently lead extractions - is....  Do you know how many leads they can get through the SVC and can they safely extract leads and/or reuse leads that have been in for 20years?

Love to hear from you.   Happy to also answer any questions. 

Cheers from Australia - Narelle 

6 Comments

Welcome Back

by dumb - 2017-02-18 08:02:18

Wow, you are a real Pioneer and survivor.

I just want to welcome you back and say hello.

I have not been through the lead replacement so I can't make any wonderful words of support in that direction. 

 

im new on here

by Pacing93 - 2017-02-18 14:37:04

I am on my 3rd pacemaker but still have the original leads so i am with you wondrering the same thing about how long they last.  I had my first one put in 1993..  I kept my first pacemaker.  lol.  Medronic is wonderful. 

Brenda

A debt of graditude

by oldearthworm - 2017-02-18 20:18:33

To those  who suffered so in the past  ..we are so much better off. Imagine carrying around a 1917 PM using a lead acid battery !!   lol     I think that 2017 PM wires may last  ''forever''..Wires tend to go bad at the connections, but, as extra wire is implanted, this is no problem .  I have learned a little here ...

Speaking of new technologhy....

by Terry - 2017-02-20 18:37:17

Google His bundle pacing, or go to His-pacing.org

Terry

number five

by dwelch - 2017-03-13 14:22:06

I am facing number five in a few weeks.  need to move up to a 3 lead pacer, surprised if you are not there as well, pacing from the side causes problems with the heart muscle after this many years,  maybe they moved to the other side for you?  Anyway I am needing a three lead, am only about half way through pacer number 4.  my first one was in 1987, so you are about a pacer and a half ahead of me.

A lead broke during my first replacement, and my third or fourth doctor (have moved over time as well as companies change insurance providers) talked about how they used to route the leads vs now (that was 15 years ago) lead to breakage.  

They are telling me that removing 25+ year old leads carry more risk than 5-10 year leads, but dont seem to be concerned about re-using the working ones.  I didnt specifcally ask in that way, you can always call them, if they wont talk to you maybe it is time for a new doc.

I am facing the what if we cant fit another lead on the left side, do you want us to remove the unused one or tunnel over to the right side.  They seem to be concerned (not really the right word) about preserving the right side as a fall back for the next few decades, I am under 50 years old.  (you are about a pacer older than I am too, I bet your first one was huge).  I am going to ask this as a separate question...anyway.

I have a 30 year old lead being used, and a 30 year old broken lead capped off and a 23 year old lead in use.  The docs seem to be more conerned about can we fit all the leads in the left side and of all the what ifs we talked about losing or not using one of the two leads in use now was not discussed at all.  And they talked about a number of what ifs.  So to your question I dont think the age of the leads are a problem (until it comes to removing them).

I dont know if I asked it exactly the right way but the what if case of down the road moving to the other side/shoulder, do we leave the four leads in the right and then add three more, 7 leads!  If he understood which I think he did those all stay in unless there is a reason to take them out.  One other issue beyond the vein is one of the valves they dont want to put too many leads over.

Just go in and ask.  I am happy that you and I are not as rare as we think (have always been the youngest person in the waiting room, he said of the 100 lead extractions a year about 15% are 25+ year old leads) we are still pretty rare and I would hope they would be willing to spend that extra few minutes to answer questions about our situation.

 

Good News..

by Narelle - 2017-03-14 04:35:15

Hi Dwelch,  Thanks for responding to my post... Im scheduled for surgery next Thursday.. have seen my surgeon who has done the the last 2 pacemakers and has since had experience removing over 500+ leads.  

I have a very similar scenario to you.  I have 3 leads in - one was trimmed back and capped off 20 years ago that was causing me funny sparking feelings, sort of like static electric shock they said it must of been sparking against the other lead or something like that (this lead was from another brand of pacemaker which wasnt compatible with Medtronic).   I also have a couple of leads still attached to the outside of my heart from the early day pacemakers. 

Anyway I wanted to tell you the good news..Plan A is to just change the box and use the old leads 20+ years old as they are still functioning very well.   Plan B is to move to my left side (for some weird reason my pacemakers have been implanted in my right side).. if there is any reason when then go in that they have to put new leads in.. My concern was what happens when 5 leads converge in the SVC (Superior Vena Cava) cause there is only one way in.. He said that they didnt really know how many leads was too many.  He also said that he is confident he can take the old leads out if necessary - but this is only necessary if they are causing problems or there is infection, its not worth the risk otherwise. (He also said much higher risk when removing infected leads than old leads)

So getting to the point of the good news... Medtronic has invented a new leadless pacemaker its the size of a large vitamin pill and its inserted through the groin under local anesthetic. (Micra).   Unfortunately it is only a single chamber pacemaker at present and there are a couple of people on this site who are trialling it... I think it is 2-300 patients are on trial.  They are currently working on a dual chamber.... so if all goes well thats what will be next for us..  

So there you go, if you can hang on to what you have for a few more years - technology may have caught up with us and we can have leadless pacemakers... How good would that be.. Here is the link...http://www.medtronic.com/us-en/patients/treatments-therapies/pacemakers/our/micra.html.

So fingers crossed if all goes well and I get a new box only, next week and my leads can hang in there for another 10 years, by then Medtronic will have the solution to a Micra Dual Chamber.  Will let you know the outcome of my box change next week.. 

Also one of the regular members on here, told me that the new leads are alot thinner than the older ones... so fingers crossed for you that they will just be able to use the 2 old leads and slip the 3rd one in.. if it has to be changed soon.. 

Cheers Narelle 

 

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

I consider my device to be so reliable, that I never think about a failure.