2nd opinion and disappointed

Hi all, 

Went to a 2nd EP for another opinion.  The answer I got was "settings are right out of the box, in the middle. I don't want to change anything.  Your heart needs to get used to pacing."  By the way, what is meant by that?  You're heart needs to get used to pacing??

I asked if he could put me on a treadmill to see what I'm feeling...he said your cardio may be able to do that?  I am SOB doing basic things like walking or going up stairs. Why are EPs so reluctant to make changes?

The shortness of breath thing really irks me and has me completely frustrated.  I highly doubt I'm going to get back to close to where I was felling the way I feel and if I don't get some help. just prior to my implant I did 45 mins of cardio at 120 bpm avg. Now I am out of breath walking. 

3 months in and I thought I'd feel better, not worse.  I just don't get it.  

My cardiologist who has treated me for 30 years has no doubt that something is off.  He knows me better than anyone.  My EPs look at my heart function and thing the SOB is related to that.   The only thing that has changed is the PM.  I can show Garmin numbers from just before surgery.  Quite different from what I'm able to do now.  

I am dissappointed and frustrated to say the least.  BUT I am not giving up.  Something is off and I won't stop until it gets fixed.  

 


4 Comments

Here goes

by crustyg - 2020-12-16 05:03:03

Hi: Pardon me if I've missed something, but this is my assessment of where you are.

You have massively reduced %LVEF (20%), presumably due to the well known LV remodelling that can occur after long periods of RV-apical pacing.  You're now nearly 3months post 'upgrade' to CRT (-D, comes with an internal defibrillator), and you're still SOB on minimal exertion.

The natural history (i.e. what happens if no-one does anything, there's no treatment) of the reduced LV contraction and expulsion of blood into the aorta is that it just gets worse over time.  Your %LVEF carries on falling, the pressure in your LA increases which reduces the natural drainage of blood from the lung circulation, your lungs get wetter and wetter, you become very short of breath at rest and eventually you have a SCD.  The End.

CRT provides a third lead that stimulates the LV directly (instead of waiting for the delayed signal from across the inter-ventricular septum from RV to LV, which arrives at the wrong part of the LV and causes the remodelling), at the correct time of the heart activation cycle, and, with luck, slowly the %LVEF improves.  By how much and how quickly is unpredictable.  Most CRT patients experience an improvement in %LVEF over time, but not all.  Some CRT patients have a significant improvement within weeks, some have to wait months or even a year.

So what they mean by 'Your heart needs to get used to pacing' is 'we need to see if the LV lead (as part of the CRT) can get your %LVEF up to something better.  Should be at least 55%, and yours may well have been below 20% at CRT implant.  And this takes time.

As far as I can see they've done the right thing - shift to CRT-x - and now you need to wait and see if things are going to improve.  By all means, keep mobile, keep active, keep working your heart.  Yes, it will be very frustrating how quickly you get out of breath, but *YOUR* actions may well help you recover more quickly.  Sitting around, cursing softly, won't help.

Hope That Helps.

SOB question

by ld1708 - 2020-12-16 11:16:45

HTH  - Thanks for your comment.  I really appreciate it and I appreciate your frankness.  

One thing I wanted to stress was that prior to my PM I was not SOB and my exercise tolerance was good, as stated.  

So post PM one can expect experiencing SOB with climbing stairs and walking?  That's where I am...

 

Shortness of breath (SOB)

by Gemita - 2020-12-16 12:46:35

Hello Id1708,

I am glad you reposted your question.  My feeling is that after any procedure our body needs to recover strength.  You have a particularly low ejection fraction and I suspect you will need more time to recover from any procedure than someone who starts with a better ejection fraction.  I feel it is bound to take you longer to fully recover the strength you had pre implant and yes, this might include going slightly backwards in recovery terms before you can get back to where you were and move forwards.

In your shoes, I would not push too hard to cause worsening symptoms or shortness of breath.  I would accept for the moment my limitations while maintaining gentle activity to stay fit.  I would not spend precious energy getting angry with my new device, with myself, with my doctors and with my life.  I would be thankful that I still have a life and where there is life there is every chance of making progress.

What medication are you on?  Is it possible that any new medication might be causing worsening symptoms or that a lower dose of a heart failure med, now that you have your new pacing system, could be tried?  I remember when my husband was given strong heart meds, his condition worsened and he asked to come off one particular med - Ranexa (Ranolazine) prolonged release.  He did much better off it, but it was a gamble.  Perhaps you could review your meds with your doctors.  Sometimes the treatment for a condition can be worse than the condition itself.  It is all about finding the right balance.  

Are you still getting episodes of non sustained VT or other arrhythmias?  They can certainly cause SOB if not firmly controlled and will make your heart struggle at times.  I hope your ejection fraction improves quickly and I wish you the very best

Too many abbreviations at my end

by crustyg - 2020-12-16 14:09:08

Pardon me - HTH == Hope That Helps.  My name starts with G - hence the handle CrustyG, I'm under no illusions that I'm anyone's favourite, friendly approachable uncle.  Well, I do have one great-niece who thinks I'm kind, which is nice.

I understand the message: whatever your %LVEF pre-CRT was you felt good, and post CRT it's nearly all gone.  I understand Gemita's excellent questions about changed medication etc., but I'm going to assume that you'd have shared this.  I note from your post 10/10/20 that your HR increases very quickly from 100=>140BPM: this *may* be too high for you and just increase heart muscle demand for oxygen at the same time reducing blood supply to the heart muscle (I've posted about this elsewhere).  Perhaps reduce the rate at which your HR is driven up by your PM, or reduce the maxHR to 130.  Faster HR doesn't necessarily mean better heart performance and exercise tolerance.

If not that, then in your shoes I would be wondering if I had suffered a cardiac event during the CRT-D placement.  Not everyone who has a hunk of heart muscle go short of blood supply necessarily feels a lot of pain, and it would explain the sudden loss of cardiac performance.

Depending on how you want to approach this, EITHER get hold of *all* of your heart-related medical notes for the last 2 years, sift through them looking for comments during the operation to implant the CRT-D, what drugs, if any, they administered during or immediately post-op, and then book a face-to-face meeting with my EP-doc or cardiologist and, with maximum charm, explain what you've just explained to me.  And then listen.

OR, ask your EP-doc to slow down the rate of HR increase in your PM and *consider* reducing your maxHR to 130.  You say that 120BPM was great for you before.

I recognise that the fact that you considered and then had a second opinion means that your trust is low with your primary heart doc(s).  Sometimes that is entirely *their* fault, sometimes we, the patients, aren't being effective at explaining what we feel, how our lives have been affected and what we're worried about.  Good docs will listen, the rest don't.

Best wishes.

 

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