No longer a success story

I received a call from the pacemaker clinic yesterday saying that my monitor was showing abnormal readings. I attended the clinic today and was told that the leads in the rv and ra were not working properly and were running down the battery. I have a CRT pacemaker which I received in May 20 after my dual lead pacemaker caused lv systolic dysfunction. I received it in January 20 due to Bradycardia.

The EP doctor turned off the rv and ra leads and left the lv lead. I was told it was safe but not to exert myself. I will have to get 2 new leads and probably a new pacemaker which will be quite soon.Apparently this is unusual. I am now faced with my third pacemaker in two years.

I am struggling to understand why I have been so unlucky. I haven't felt as well as I did last year but I also have a mitral valve prolapse so I thought that was the cause.

The doctors have been very kind but I am now very anxious about getting a third pacemaker.


10 Comments

We will find a way forward

by Gemita - 2022-04-06 04:19:15

Dear Aberdeen,

After your first hurdle I had become used to hearing that all was well, so it is difficult to understand what could have happened to cause this sudden change in good fortune.   I know it is very early days but have your team been able to offer you any explanation of why this might have happened or are you aware of any activities or changes in your heart condition that might have contributed to your present difficulties?

I hope your doctors will give you a written indication of what will happen next, what checks will be made to establish the likely cause for your right sided lead failure so that any new system will hopefully succeed.  Has there been any movement of your device that might have put pressure on your right side leads for example?  I know you have a good relationship with your doctors, but I would perhaps consider getting a second opinion if necessary to find the cause for this failure.  I would want to be absolutely sure that any future surgeon is able to provide adequate surgical implantation techniques to try to prevent this from happening again.

I will PM you later.  Please take care Aberdeen and remember we are always here to try to help you in whatever way we can.  We will find a way forward to allow you to continue to enjoy a quality of life xx

Thank you

by Aberdeen - 2022-04-06 05:42:41

Dear Gemita,

Thank you for your reply. I have no idea why this has happened. I have had some episodes of feeling lightheaded but they have been very brief. I haven't felt as fit as I did before but I thought it might be the mitral valve prolapse. My last pacemaker check was in October and everything was normal.

I can't think of anything that I have done differently. I was at an airport in February but they did a body check instead of going through the scanner. I am very careful not to knock or bump the pacemaker.

As you said I would like to be absolutely sure that this 3rd pacemaker is going to last longer than 2 years.

Every pacemaker has been done as an emergency so I usually talk to doctors from a hospital bed. 

I will try to get a written indication of what is going to happen next. I had a venogram to check my veins to see if there is space for two new leads. I can't remember if they will remove the ra and rv leads. I wish I could have someone with me taking notes as I am usually shocked by what has happened.

As soon as I know more I will post it.

Without the reports we can only speculate

by crustyg - 2022-04-06 08:17:17

Leads 'fail' and cause increased battery drain for one of a few reasons:

1 The lead itself starts to fail (usually the inner wire starts to fracture due to the continued flexing caused by each heartbeat).  The vendors try really hard to avoid this, and test like crazy (there's a YouTube video about it), but nothing being flexed lasts forever.

2 The lead=>heart muscle junction starts to grow fibrous tissue (which doesn't conduct electricity) so the PM ramps up pulse voltage.

3 The insulation of the leads was damaged when the extra LV lead was added or diathermy damaged the insulation near the enlarged PM/CRT pocket.

You can try asking your EP-doc but whether you'll get an honest answer is anyone's guess.  The PM data (impedance, pulse voltage, capture settings) and the trend of these values over time will *probably* provide the answer.

But if you need a new box then there's no alternative.  They will almost certainly remove the old RA/RV leads - and you should ask about this.  How many lead removals they do each year and their success rates.  It's specialised stuff, but much more routine than a decade ago.

Thank you

by Aberdeen - 2022-04-06 09:19:50

Dear Crusty G,

Thank you very much for your information about lead failure. It was very informative.I feel better prepared to ask more questions.

I will post any new information when I get it.

Understand

by Good Dog - 2022-04-06 11:01:18

Just want you to know I understand. We do not look forward to these procedures and when they pile-up like this it can make us anxious. The good news is that these procedures have become very common and complications are extremely rare. Wait, there is more good news: Since your PM and leads have been in such a short time, they shouldn't present any problems on removal. So it should be trouble-free and will be over and done before you know it. Then you can play it up for some sympathy when you get home. If you play your cards right, you can even get room service and special attention. You won't need it, but hey, they don't need to know that and you deserve it anyway.

You can always lean on this site for any questions and concerns.

I wish you the very best and look forward to hearing back when you get home.

Sincerely,

Dave

Thank you

by Aberdeen - 2022-04-06 13:35:09

Dear Dave,

                Thank you very much for your reply it is appreciated! I had a venogram and the results were good. I am just waiting for my date to get the pacemaker replaced.

 

Consider another EP

by ar_vin - 2022-04-06 14:56:09

Given the issues you've had over such a short period, I'd consider going to a different EP. At least seek out another opinion.

You had the original PM in for a brief time; too brief for it to cause cardiomypathy. If you already had some form of cardiomyopathy *before* your original implant, why didn't you get a CRT then?

It raises questions about both the diagnostic competence of your EP AND surgical skill.

Another EP

by Aberdeen - 2022-04-06 15:17:43

Dear ar-vin,

Thank you for your reply. I received my first pacemaker in January 20 due to Bradycardia. According to echocardiograms there was nothing wrong with my heart other than the slow heart rate. I didn't have cardiomyopathy or a mitral valve prolapse. 
The dual lead pacemaker caused lvsd so in May 20 I received a CRT pacemaker and was diagnosed with a moderate mitral valve prolapse. 
I was told that this happens occasionally. I accepted the CRT pacemaker as it increased my ef but it was always'hyper dynamic'.

 I find it hard to accept that I will need a 3rd pacemaker in just over 2 years.

With the help of all those who have replied I am compiling a list of questions which I hope may be answered. I don't want another pacemaker in a few years!!!!

Questions

by Good Dog - 2022-04-06 16:23:35

Your problem is consistent with what I have read:

<<Left ventricular (LV) systolic dysfunction leading to heart failure (HF) is known to occur after permanent pacemaker implantation (PPI) in a subset of patients. They are often treated by upgradation of the pacemaker to cardiac resynchronisation therapy (CRT).>>

However, it is a bit unusal to have two leads fail that quickly. I guess that you know that. There may be a simple explanation, I don't know? I do agree that you should consider getting a second opinion unless you have a significant amount of trust/faith in your EP/Cardiologist. Thing is; it is difficult to imagine anything the Doc could have done to cause the leads to fail. So I guess that my point is that you are doing the right thing by putting a list of questions together. I think that you should include: what are the chances that two leads could fail that quickly? Is there an explanation for it to have occurred? If after you ask the questions you feel good about your Doc, then fine. However, if you need a second opinion, you should make sure you go to someone that is not associated with your doc or even the same hospital. Preferably; out-of-town.

In any case, I am confident that all will go well for you. 

I wish you the very best!

Sincerely,

Dave

Questions

by Aberdeen - 2022-04-07 08:11:09

Dave,

Thank you very much for your reply. Again it was very useful!

I am waiting for my appointment- I hope it's soon! This time I hope I have my pacemaker for a long time!

 

 

You know you're wired when...

The mortgage on your device is more than your house.

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.