"I can't tell how long you've been this way..."

Hello everybody FG back!

Well, after talking a while and looking at my EKG, asking my wife and I multiple questions and criticizing me mildly for having gone so long without getting an EKG (I guess about 20 years or so before all this started), my 3rd opinion EP shakes his head and says, "I can't figure out how long you've been this way. When  did you first start having symptons?" I said man I told you, I really don't think I have any symptoms, I'm 68 and and can't run quite as far and fast as I used to and I only like to bike about 70-80 miles max and have no trouble going up stairs. All this started when I was required to get  "cardiac clearance" for neck surgery which still hasn't been done. 

I have slow aFib, complete heart block, and a junctional escape rhythm with normal narrow QRS at 40 bpm, which can go to 37 overnight. I had a cardiac CT which only showed enlarged atria. Then a cardiac MRI which showed an EF of 65%, but a small area (2% the report said) of reduced inferior wall motion which the cardiologist said was a sign of possible cardiac sarcoid, so I had a PET CT specifically set up to look for cardiac sarcoid. It was normal. 

So now what? I know my heart is slow. But I guess I'm used to it. And I'm not like the rapid ventricular response folks that need ablation.   I have slow aFib and no symptoms. But I'm told an escape rhythm can be unreliable and I might have some sort of sudden cardiac stoppage. I read that I still have at least two more natural  pacemakers in line before I run out of tissue with intrinsic automaticity.

Some of you on here are incredible sources of information. Please give your opinions. Is this really needed? We all know that something as serious as a pacemeker can have complications. I heard of one person who had a stroke during insertion, I guess because of a clot knocked loose from the left atrial appendage. I sure don't want that! 

If I do go through with it (and probably will, my wife wants me to) I would like to get conduction system pacing such as HIS bundle, LBB or septum to avoid the PM induced cardiomyopathy that can result from long term RV apex pacing. I would be paced 100%. 

How many of you have HIS, LBB or septal pacing? How many with RV apex pacing have needed CRT because of PM induced cardiomyopathy? I know this is long but a lot can be covered in this thread and we can all learn a lot. Thank you all sincerely. FG


7 Comments

In favour of a pacemaker and the sooner, the better

by Gemita - 2022-11-06 05:45:47

Hello FG, welcome back.  You say you have slow Atrial Fibrillation (AF) and complete heart block.  Well I really don’t know how you have managed to be without a pacemaker for all this time and I can only assume your general fitness is helping you, although clearly your investigations are showing some signs of atrial enlargement now, probably from the AF.

Let me just say, you have been extremely lucky not to have collapsed with your complete heart block.  As a matter of fact I have first hand experience dealing with a patient with heart block and slow AF and he has not been so lucky FG.  My husband has intermittent complete heart block and very slow AF.  When in Italy some years ago, he collapsed suddenly beside me.  I was there to support him as he fell “heavily” onto the road.  I believe I prevented him from hitting his head and causing injury since he was on anticoagulants at the time.  I honestly thought I had lost him FG.  Of course his sudden collapse could have happened anywhere, anytime, perhaps while driving and the results could have been catastrophic.

I cannot tell you what you should do, although no doubt your doctors couldn’t be clearer that you would benefit from a pacemaker.  That would be my decision too because an escape rhythm cannot be guaranteed and the subsequent risks would be too high.  Also with slow AF and complete heart block your heart rhythm at any time cannot be relied upon.  

Is a pacemaker really needed you ask?  In my opinion yes FG for your own safety and for the safety of othersYou have the evidence:  AF with a slow ventricular response rate and complete heart block.  What more do you need?  As you get older, it is only likely to get worse.  My husband had his implant at 80 years of age.  He had previous strokes from his slow AF, but they still recommended a pacemaker because of the risks of a sudden fall.  He was also advised to stop driving immediately at least until he received a pacemaker to protect him should he collapse while driving, potentially killing himself and other road users.

I do believe you have had sufficient time to come to an “informed” decision and you and your wife would benefit from moving forward with confidence now.  I believe the risks of not getting a pacemaker would far outweigh the risks of having one implanted FG.  I have dual chamber pacing since 2018.  The right ventricular (RV) lead was placed in the RV “septal” area.  My husband has a single lead pacemaker, also placed in his RV septal area.   Our pacemakers have improved the quality of our lives immeasurably and have prevented syncope and many other troublesome symptoms.  

I would speak to your doctors about the best manufacturer to go for, for your lifestyle and to decide on where to place those leads.  Both these considerations are important for your future success with pacing.  You probably already have AF induced cardiomyopathy, so let us try to work out what pacing system will be best for you, to try to protect you from any further deterioration. 

HIS, LBB (left bundle branch) or right septal pacing?  I see you have done some extensive research on where to place those leads, so now is the time to use this information to get the very best results for the future.  I wish you every success.

PM choice

by FG - 2022-11-06 17:00:15

Nice to hear from you Gemita. As always you are very knowledgeable, courteous and straightforward. I have been getting up to 140 bpm when I jog. The cardiologist is not sure if I go into second degree block during exercise and whether it is intra- vs. infra-Hisian so I am going to the cardiologist tomorrow for a treadmill test. Will let you know the results. 

Escape rhythm

by AgentX86 - 2022-11-06 19:21:06

It depends on the type of second degree block.  With your history, I'm betting on Mobitz-II, which can rapidly deterriorate into third-degree (complete) heart block quite rapidly. No, with complete heart block you'd down to your last escape rhythm, the ventricular escape.  You aren't going to have a junctional rhythm with a heart block.  It wouldn't be getting through to the ventricles.  IMO, you need a pacemaker yesterday but see what your cardiologist says.

In cardiology office now

by FG - 2022-11-07 12:03:18

Thanks agent 86. Well, just finished the treadmill test. I was breathing pretty hard but I went all the way to the end. Now I'm back in the examination room waiting for the doctor to come back. My heart rate went up to 140 and there was no ST elevation or chest pain. I suppose that only means the plumbing is fine. Guess I'll get the news soon and let you guys know.

Have you any news?

by Gemita - 2022-11-08 07:35:06

FG hope your meeting with the doctor has helped you to come to a decision or at least has started the process of deciding on the best way forward, including manufacturer device, number of leads and most important, position where leads will be placed.  We look forward to hearing from you when you are ready.  A big big decision I know

Treadmill Test

by FG - 2022-11-08 23:25:43

I went the full way with no SOB or chest pain. Yes he still says need the PM. I asked about what you said and he said I have to ask the EP. Same EP I saw in June. I'm making an appt. and will stay in  touch. Thank you. Yes is big decision. Like a lifelong commitment! I guess the hardest part is invisioning something inside of me, in my heart! What a weird thought. But I cetainly don't want a sudden cardiac event. 

HIS pacing

by BradyJohn - 2022-11-19 21:14:35

Hi FG,

I'm 59 and pretty active,  cycling and running.  I'm paced to the HIS bundle.  I've been told that it may draw a bit more juice from the battery,  so I may need a replacement a little sooner than otherwise.  At one appointment the tech thought the heavier draw could be scar tissue. Nope,  just paced to the HIS.  I've had my pacemaker for nearly three years.  Best thing ever. 

Cheers, and all the best, 

John 

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