Heart Failure

Heart Failure

by Good Dog - 2023-10-17 20:26:48

Yes, I have pacemaker induced heart failure. My heart failure is the result of dyssynchrony caused by being paced for many years (30+ years). My ejection fraction is around 40%. 

I noticed from your bio that you have been paced since 2022. While a pacemaker can certainly cause heart failure fairly quickly, it does seem like a very short time for that to occur. Also, my leads were placed many years ago before there was much knowledge on the optimal placement of leads in an effort to prevent heart failure. So I'd be interested in knowing more about your circumstances.....

Sincerely,

Dave

Starting Point

by Penguin - 2023-10-18 05:29:21

Hi AngVal, 

I'm a bit confused - is this you or your son? From looking at recent posts it seems to be you. You're reporting an EF of 55% which fell to 13% followed by emergency measures and you are now waiting for a 3rd lead / defibrillator. Have I got that right? 

I'd slightly disagree with Dave above - who incidentally knows a great deal about pacing and is a source of good information - in that you may get pacing induced heart failure more quickly than Dave suggests, if your starting point is already compromised perhaps.  E.g. if your heart pre-pacemaker implant was already struggling and your EF was low. 

An EF of 55% doesn't sound too bad to me, but I'm no expert. However, posts on other threads suggest that EF %'s can be unreliable. You say you felt terrible (in another post/thread). What were your symptoms?

Pacing induced heart failure, as I understand it, can be due to the causes that Dave mentions e.g. dyssynchrony from lots of v.pacing.  Is this what happened in your case? 

Apologies for all the questions, but it helps to be clear as this is clearly a serious consequence of pacing and can concern other forum users.

Heart Failure

by Aberdeen - 2023-10-18 09:10:44

I too have pacemaker induced heart failure. Due to a low heart rate I received a pacemaker in January 2020. In May 2020 I collapsed at home and  it was discovered that the dual lead pacemaker had caused dyssynchrony between the left and right side of my heart. 
I then received a CRT pacemaker which increased my low ef to a healthy level .

I also had to take medication in May which I did not need before. (Low dosage beta blocker, ace inhibitor and aspirin to thin my blood. 
I think I was unlucky because this doesn't happen to many people after 4 months of having a pacemaker.

After yet another unlucky spell having RA and RV leads failure in 2022 and having them replaced- I feel quite well today 🤞🤞🤞. I am just back from the gym and doing an exercise class. 
 

Heart Failure

by AngVal - 2023-10-18 16:21:06

I am sorry I didn't clarify more. This is the short version. 

I had a pacemaker put in March of 2022 out of the blue.  I passed out with no other symptoms and no warning.  I had 3 other episodes within the next hour on the way to and at the hospital.  I have no other health issues.  Absolutley no issues with the veins arteries etc in my heart according to the heart cath.  I had 100% heart block in my electrical system. I had a 2 lead pacemaker put in and I felt good after.

I have had sight pain and swelling in my armpit since I got my pacemaker but that is another issue. 

I had a dry cough in January 2023 that would come and go.  I was working with my primary doctor and EP trying to figure out the cause.  In April 2023 I was not able to function at a normal level. Walking to the barn, carrying water buckets, doing chores, dragging the garden hose, walking up stairs, vacuuming the list goes on and on.  I could not lay flat when sleeping and had a lot of chest pain and pressure. I could feel my heart fluttering or pounding against the bed. I had bad days, better days and terrible days. . In May my EP said that he would see me in a year even after all the issues.

In July I made a trip to Colorado and that was when I knew that something was really wrong.  The elevation is 8000 and working at that elevation was brutal. I got back and made an appointment.  Took me a month to get in and then had to fight to get them to look further into it. Another 3 weeks for the stress test to find out after I got home that I was in heart failure and my LVEF was 13% and I would need to be fitted for a life vest because I could go into cardiac arrest at anytime.  I had an echo scheduled for the week after but ended up in the hospital for 2 days. I had fluid around my heart and in my lungs The echo showed my LVEF between 10-14%. I am on a heart failure medicine regime for 90 days to see if the LVEF will change.  My heart is out of time / dyssynchrony. Pacing induced.  I will have an echo before they decide which pacemaker to put in but will most likely be a defibulator. 

I am in the waiting mode right now.  I have an appointment with a new ep and to get a second opinion.  Hope this clarifies a little.  

Second Opinion

by Penguin - 2023-10-18 19:10:44

Hi again, 

Thank you for explaining that you have dyssynchrony induced by pacing. That is very bad luck indeed and I feel for you. It can be very scary when a treatment doesn't improve your condition or makes it worse. 

I truly hope that you get more support from the new EP and that his opinion will guide you effectively.  It helps so much to feel that you are being listened to and that your symptoms are taken seriously.  We know our bodies and yours clearly gave you all the hints that something was wrong.  You did well to advocate for yourself. 

There are quite a few people on this forum with experience of heart failure and / or low EF % s.  My own EF was low (30-35%) pre-pacing, and I acquired pacing induced issues when exposed to unnecessary high burden VP which are permanent.  I don't know if they will progress and whether I will need more VP in the future. 

Please keep us informed whilst you wait for news and confirmation of how your HF will be treated.  You must feel very concerned currently. I'm hoping that you get some decent advice that you can trust. Please try to focus on some of the success stories posted on this thread.  HF is an unfortunate naming choice for your condition. There are a lot of stories which confirm that there is more hope than the name suggests. Many people cope extremely well with implanted devices and their EF% improves. 

I have my fingers crossed for you. 

Best wishes.

I Also Had Pacemaker Induced Cardiomyopathy

by SeenBetterDays - 2023-10-19 06:11:46

Hi Angval

I am so sorry to hear all that you have been through, this process must have been extraordinarily traumatic for you. 

I had a dual chamber pacemaker fitted in January 2021 for bradycardia and pauses which subsequently developed into complete heart block and so required 100% pacing of my right ventricle.  I initially started to recover but didn't feel great and did some research into settings.  After having some adjustments, this seem to improve things for a short while but I soon started to feel as you described, chest pain, crushing fatigue and a general inability to function normally.

Frustratingly, I kept being told that the pacemaker was working fine but this seemed pretty irrelevant to me when I was feeling so ill.  I pushed for further investigation and they perfomed a stress test and echo.  My EF was found to be 45% (it had been 65% prior to implant).  They told me that this was on the low side of normal but would just take a watch and wait approach. The drop was likely caused by dyssynchrony in the ventricles.  In the UK they do not generally look at CRT until your EF falls to 35% or lower.

I wasn't willing to just wait until my condition deteriorated further without taking action so I did some research and found that conduction system pacing had been found to help in some patients with pacemaker induced cardiomyopathy.  I paid for a private His bundle pacing which I had in July 2022 and thankfully my ejection fraction is now estimated at between 54 and 57%. The stress of the process physically and mentally took a toll and it has taken me a further twelve months to see signs of real recovery but I truly believe that without the further surgery I would have been in a heart failure situation.  I appreciate that many people who are paced 100% in their right ventricle do not suffer PICM but all that I can say is that there is clearly a sub set of patients whose bodies do not tolerate this form of pacing and the consequences of that can be profound.

I don't know if conduction system pacing is something that would be appropriate or available in your case but you may want to consider looking into this option and, if you get the opportunity, raising the question at your next appointment.  This is a more physiological way of activating the heart and may be of benefit to people whose hearts do not respond well to a heavy burden of right ventricular pacing.  I really hope you are able to get some good advice quickly and that you can agree a strategy that will work well for you and give you some reassurance that you are getting the help you need.  I am thinking of you and sending you my support and best wishes through such a challenging time.

HIS Bundle Pacing

by Good Dog - 2023-10-19 08:50:43

As the others here have expressed, I am sorry you have been through so much. The details regarding the treatment you received is much less important than how you feel afterward. That is the bottom-line; how you feel! In your case; not good.

Whenever possible; you need to advocate for yourself. However, in order to advocate for yourself, it helps to have at least a very basic understanding of the treatment options that may exist for your condition. That isn't always possible, but when it is, it can provide us the ability to have a confidence level and a piece-of-mind that is really important. In my original comment I mentioned that knowledge surrounding lead placement has come a long way since my implant back in 1987. I suppose that is one of the reasons I questioned your HF so rapidly after your PM implant. I guess that your condition was such that it didn't take much dyssynchrony to push you over the edge. There is no question that with the knowlege EP's have today, they would have or should have placed your leads optimially. I certainly would have hoped that your EP placed your RV lead septal. My apical placement in the RV is the worst and has certainly exacerbated my HF as my RV pacing burden increased. BTW: many of us with complete heart block are not candidates for 2-lead HIS Bundle pacing which is the physiologica pacing SeenBetterDays referenced. I am one of those people.

It certainly seems that you are a prime candidate for a 3-lead CRT and ideally with left bundle branch lead placement for the LV. I say "seems", because I don't know enough to know with any certainty. Your doctor is the one best suited to make such a decision in consultation with yourself. I tell you this, because I have learned that you would be best served by advocating for yourself in discussions with your Doc. After having many different EP's over the years, I have also learned that they all do not have the same level of experience and expertise. As they say; only 1/2 of them graduated in the top 50% of their class. In any case, my point is that you need to discuss your treatment plan with your EP and try to get a level of confidence that you are being best served by his plan moving forward. That will give you the piece of mind you need.

I wish you nothing but the very best! I am confident that you will get the treatment that you need to return to feeling good again! Please stop back with another post to let us know how you are doing. Hang in there!

Sincerely,

Dave