In only 3 months

second opinion

by Tracey_E - 2018-04-27 09:42:21

I would get a second opinion for sure. If you are seeing a cardiologist, try an electrophysiologist instead, that's a cardiologist that specializes in electrical problems. You might consider traveling to a high profile clinic like Mayo or Cleveland where they are more equipped for unusual cases. I would want to have the position of the leads evaluated by another set of eyes, have the pacer settings looked at, have another echo because results can vary. 

Pacing can cause CHF, but not usually in 3 months, more like years. Being in heart block is harder on the heart than pacing so the small potential for pacing complications is the lesser of two evils. When we are in block, the atria is pumping the blood through but the ventricles aren't pushing it out fast enough so that's hard on the heart.

A CRT can help with CHF because it paces both ventricles and forces them to stay in sync. No guarantees it will bring up EF, but it can. The pacer sends out the signal to beat, the heart responds by contracting. EF is how hard the heart contracts. Another option is his bundle pacing, which is two lead but it's a different way of placing the leads that better mimics the heart's natural conduction. I would make sure your second opinion is with someone familiar with his pacing so you can have a discussion which is a better choice. 

How do you feel? 45 is lower than normal but not that low, certainly not low enough to rush into another surgery. Some people get as low as the 20's and are still able to stay active. You have time to do your homework and seek another opinion. 

Second Opinion

by Edgebull - 2018-04-27 13:33:46

Thanks Tracy,

I am already working on a second opinion consult.

The EP specialist that I will be working with has already acknowledged that the normal protocol of installing two leads (right atrium  and right ventricle) pacemakers is probably faulty.  A third lead to the left ventricle to synchronize the ventricle beat is the most logical thing to do.  I was told that insurance companies are not convinced and that's why two leads are installed first.  Unbelievable!

The decline in my EF occurred in three months.  I know since I had an echo done in January and another this week!  That's a lot of decline in three months.(6.2 to 4.5)

I supposed this situation won't be fixed until insurance companies have to pay out money in lawsuits.

Thanks,

Ed

And another opinion

by Gotrhythm - 2018-04-27 15:28:50

I second TraceyE's opiion about getting a second opinion.

And since it is said that the more choices you know you have, the better decisions you make, you might also want to get an opinion from an EP who does His-bundle pacemakers. They are said to avoid some of the problems such as you are experiencing.

I've lost the link I used to have. Sorry. But type His-bundle pacing into your browser. You should find plenty of information.

opinions

by Tracey_E - 2018-04-27 16:04:17

Two leads isn't perfect, no, but I think doctors disagree over whether the answer is a 3rd lead. It's not just the insurance companies. I was born with heart block so have been paced for a long time.  When I had my last replacement, my long time cardiologist suggested giving me a CRT. Insurance would have paid it but I did some research then said no thanks, primarily because my EF hasn't dropped and I don't want to mess with my leads if we don't have to. I wasn't saying no forever, I just didn't think the timing was right.  I switched to a congenital specialist in a large research/teaching hospital last year who has many many more paitents paced long term for heart block, and asked him about CRT at some point. He said absolutely not unless there is a need, even if my EF drops he doesn't ever see me being a candidate for it. I'm sorry, I don't remember all his reasons but the gist was that with heart block it doesn't necessarily help much. I was very surprised that he differed so much from my other doctor because if the old doc had his way, I'd already have it. 

We've had one or two members here with heart block given CRT to start, the rest all have 2 lead, a few even have one lead. CRT is very much the minority and as far as I know there are no studies evaluating how effective it is. It's a lot more invasive, the device is larger, the batteries don't last as long so there are downsides even if it brings up EF. 

An EF in the 40's probably won't qualify you for a CRT either. I believe low 30's is the requirement.

It's possible to have two echos with two different results depending on the day and the technician. That's why I'd ask for a new one.

And this is purely speculation, I'm wondering if the ventricular lead is not in a good position and that's why the heart is showing stress so quickly. That's why I suggested having someone new review your xrays and echo. If that's the case, it's easy enough to move the lead for now. As you get closer to a year, it gets grown into place and moving becomes trickier. 

CRT or HIS Bundle pacing

by Edgebull - 2018-04-29 17:04:06

Now after getting heart failure from my pacemaker, I now have two options. (Please let me know if I have any more options)

I can either switch to a CRT device or I can move the right ventricle lead to the HIS bundle.  

Assuming I use a well experienced EP cardiologist,  what are the benefits and risks of either option?

Ed

third option

by Tracey_E - 2018-04-29 18:58:04

The third option would be moving your ventricular lead if it's not in a good spot.

The fourth option is take meds that reduce how hard the heart works, then wait and see what your EF does.

Fifth option would be do nothing and see how it does, especially if you are not symptomatic. Your number is low but not dangerously or debilitatingly low. Many choose to do nothing until they lose the ability to be active. You may stay steady at this rate indefinitely in which case you can re-evaluate when it needs replaced down the road. 

Whatever way you go, you don't want just an experience ep. You want a practice that specializes in complicated cases, a practice where they have seen other patients like you. What you have described is extremely rare which means your doctor may not have first hand experience dealing with it. You don't want to be the test case. I would ask for evaluation of genetic markers and autoimmune system to see if anything else is going on in addition to reviewing your current lead position and echo. 

As many as 10% of paced patients see a decline in EF after years of pacing. After 3 months is virtually unheard of so it makes me think 1) the lead is in a bad spot 2) the second echo was not accurate or 3) something else is going on and your EF would have dropped with or without pacing. 

His bundle pacing is easier on the heart, more closely mimics the heart's natural conduction system. It's gaining popularity but is not yet what I'd call common. Less hardware means less things to wear out down the road. 

CRT are larger, the batteries don't last long, putting the 3rd lead in is more invasive. It may or may not raise EF.