Pacemaker and shortness of breath

I have posted on this forum in the past since receiving my dual chamber implantable device more than 3 years ago. Form the beginning, it became plausible that they may have made a mistake. I was found not to have the diagnosis  (SSS) that paved the way for the original unit. Furthermore, my EP determined that I was symptomatic  when my PM was pacing, despite my periodic slow beat. Also, the rate response setting was throwing me into Ventricular Tachycardia on a repeated basis. We turned off the RR and rolled the settings back so that my pm would only engage below 30 bpm. 

After that, i titrated off the medications related to the pm, includingh flecainide. Over the months my heart rhythm became nearly perfect (thanks largely to my new whole foods diet and magnesium citrate supplementation). My device sat idle (or so I thought) and I took joy just listening to my smooth heartbeat which loves the mid 50s. All symptoms went away. I felt nearly perfect. But then ...

The one symptom that wouldn't go away, and only got worse, was a labored breathing. It was so intermittent that I thought my heart just needed more time away from all the treatments. I resumed frequent cycling hoping that would help my heart get back to normal. But the frequency only incfeased and the period of labored breathing became longer. I went to my cardiologist, who did an echo and EEG and said my heart was pumping better than it ever had. I was not pacing in either chamber and my ejection fraction had improved, believe it or not, to near normal levels. My heart was structurally in a better place than even before my PM. So, why did I feel worse than before?

My cardiologist reminded me that I was 60 years old and that I shouldn't hold out for perfection at my age. I leaned into him and said that wasn't acceptable. Why is breathing so hard for me!!! 

Here's the thing. And it IS a thing. A dual chamber PM requires a lead to be placed in the ventricle. To get there, it has to pass through the tricuspid valve. They call it the forgotten valve because it hasnt been studied nearly like the others. What that lead will sometimes do is interfere with leaflets as blood moves through it. That interferance will come in many different ways -- anything from fusing to the leaflets to dynamic looping to simply finding an out-of-the-way place between the leaflets to cuase no discernible problem (this seems to be the most common). But for the extreme interaction, what may have been an acceptable tricuspid regurgitation becomes one that throws off noticeable symptoms, primary of which is a labored breathing.

So, a dual chamber pacemaker never just sits there. Even if your heart never requires a pace or a tachycardia paceout, it is interracting with your heart. I'm not sure if doctors just don't know that, or they just don't want to talk about it. It seems like it shold be part of the discussion, before and after an implantation. One shouldn't have to find out about this THING on his own form the American College of Cardiology and other places.  

I'm not done getting answers. In the meantime, in the quiet time just before I fall asleep I listen to my heart beat with all its perfect imperfections.

 

 

4 Comments

Hmm

by ROBO Pop - 2021-06-01 17:58:14

Seems to me you should be pissed first because a pacemaker was implanted unnecessarily, and second because they haven't removed it. No matter what, at some point it's gotta come out, and the longer they wait the more challenging it'll be

WOW!

by arent80 - 2021-06-01 20:00:58

I have struggled to describe what has been happening to me and you've nailed it perfectly. I too have SSS but only at night when I sleep so I rarely use my PM. With that said I feel EXACTLY how you do! The labored breathing is NOT natural. It did not occur before the PM implant and has only started after. No one can explain why. I too have a great echo, great stress echo and a clear CT Angiogram. This is so frustrating! All they ever tell me is that I'm SENSITIVE to pacing which is complete BS. What I feel when the PM is on is nothing like I do when its off. It feels unnatural. I don't breathe the same, I don't feel the same, I feel awful. So since I have a good intrinsic heart beat they basically have put it on 50 on the low end and that's it. So far I've been ok but the labored breathing at times is DRIVING ME INSANE! PLEASE let me know if you find out anything else so I can take this to them immediately. All the best to you sir! Take care!


Alejandro

SOB Issues as well after pacer implant

by Loretta - 2021-06-01 21:43:21

Post implant 1/2021 Medtronic Azure for SSS. ooo.1 % usage now.

I was walking a fairly flat trail in Lake Tahoe ,NV. last week.  I was a mile into the trail and had Sob,light headed ,so I turned around and headed back ,as I had felt these symptoms before and it was not a good feeling. I drank extra water, ate and went home. It is not the first time I ever had SOB after my pacer implant. It usally resolves on its own but the sob was off and on the whole night and into the next week.  I felt horrible. 

I went to primary ,ekg perfect,they told me to go to ER if it didnt resolve.  Well I had enough,I went to ER ,spent the night in the hospital with all the normal cardiac tests done to rule out HA, clot etc. All my tests came out perfect. EF was better than right before I got the pacer.  The only thing noted on my echo was not being able to check pulmonary pressure due to mild tricupsid regurgitation. I find your post interesting to say the least! 

"But for the extreme interaction, what may have been an acceptable tricuspid regurgitation becomes one that throws off noticeable symptoms, primary of which is a labored breathing".

Now I wonder after reading your post and I am going to have to ask my cardio apn about this. 

It makes sense to me since I have had more issues with the sob AFTER the pacer implant.  I to was told I was just sensitive to the pacer when I brought it up (sob)to doc in the past .  

My primary wanted me to take anxiety pills next time my sob hit as to tell me its all in my head! 

I know what I have felt and I know where it originates from as well. I have no reason for anxiety,well except when the sob hits at unexpected times.

Thanks for the information ,glad I am not alone.

LV - Tricuspid

by AgentX86 - 2021-06-02 00:24:58

From your post, it's unclear to me if your doctors have found that the RV lead is interferring with the tricuspid valve or if you've read that it's possible.  I also don't understand the point about mild regurgitation causing severe problems.  If mild regurgitation is causing that much trouble, it's either not mild, or your heart isn't beating as well as you think (no reserve).  Again, I've missed something.

If you don't need a PM, that's one thing but being told that you're 60 and shouldn't have the energy you did, balderdash.  There is nothing to slow down a healthy 60yo.

 

You know you're wired when...

The mortgage on your device is more than your house.

Member Quotes

I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.