2 months in new CRT - D

Ask to go back for additional checks and a full review

by Gemita - 2020-11-19 04:48:16

Hello LD1708,

You are not crazy and of course you know your body best.  We all do.  I wonder if your arrhythmias are again causing the problem ?  I see you were treated for these in the past.  I have good heart function but oh dear when I slide into an arrhythmia my heart is all over the place and so is my pacing.  I too can struggle for air as I climb stairs and I can also experience mid central chest pain.  

Unfortunately the pacemaker will not help stop an arrhythmia or fast heart rate, although your defibrillator will certainly stop a dangerous arrhythmia/fast heart rate if it sees one.

Have you had any recent external monitoring to try to pick up what is happening?  It is certainly true that some of us need a few months for the pacemaker and heart to settle.  Your situation is more complex with your low ejection fraction which may take more time to improve with CRT and any medication changes.  In view of your worsening symptoms though I believe you should be seen as soon as possible for a few checks, maybe even a medication review?  I remember my medication needed changing soon after pacemaker implant.  Pacing can certainly affect our medication requirements and medication can also affect our pacing requirements, so maybe some adjustments to both medication and/or pacing might be required?

In an earlier thread, you mention urine output has declined.  I hope you will have a full review with your doctors and maybe some bloods taken to check kidney function, look for anaemia, infection and other conditions which might be causing your symptoms.  With heart failure symptoms, please do not try to be brave and push through them.  Ease off until you can be seen.  Hopefully it is something that can be helped.  Good luck and stay safe

Who to ask

by Gotrhythm - 2020-11-19 16:18:15

I'm not as familiar with CRTs as with pacemakers, but if we were talking pacemaker, I'd say your settings might need to be adjusted--especially rate response which might not be speeding up quick enough.

But that's just me. What you really need is to talk to someone who is knowledgeable CRTs and your case in particular. That person should be your doctor but apparently isn't. I've learned that if I'm not happy with a doctor's answers, that's reason enough to try someone else.

You don't have to fire your doctor to get a second opinion. I've never been sorry I sought another doctor's help, but I have regretted waiting.

If you're wondering if you should seek a second opinion, I think the answer is, you should. The worst that could happen is that the second doctor will tell you exactly the same thing as the first.

Recent CRT-D

by Aberdeen - 2020-11-19 17:20:31

Hello, Gemita and Gotrhythm have given you excellent answers to your post.I only wanted to add that I have had a CRT-p for 6 months. From day one I felt better regarding my SOB due to Bradycardia. I too have a low EF.

Good luck and I hope you get answers and feel better soon.

CRT

by AgentX86 - 2020-11-20 19:27:01

A CRT shouldn't be any different in this way than a non-CRT PM.  If you're not up to what you were before, it's time to get some help.  You may not see an improvement right away but you shouldn't be going backwards either.

Do you, by chance, also have SI node problems, specifically chronotropic incompetence?  If your pulse is limited to 100bpm, rate response my need some major adjustment.  If not, perhaps there is something really wrong with your maximum rate?

You're unlikely to hurt yourself being limited to 100bpm, so I wouldn't stop exercising.  I'd certainly be knocking on my device clinic's door asking a lot of "whys".

I do a lot of walking and my rate never gets over 110bpm but it works for me.  I'm never SOB, barely puffing at the top of the largest hills in the neighborhood.  They aren't that big but my rate rasponse doesn't sense stairs. Two flights gets problematic so I don't consider it that bad.

update - went to new EP for 2nd opinion

by ld1708 - 2020-12-08 17:25:59

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?  

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.  

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.  

Settings out of the box and need to get used to pacing ?

by Gemita - 2020-12-09 02:58:35

Thank you for the update.  It would be better if you reposted your update message to make sure it gets seen.

Settings out of the box and getting used to pacing is the simple answer and not at all helpful.  Yes most of us need to get used to pacing and settings initially will be those factory settings which will need to be adjusted to suit us personally but if your breathlessness is a problem you need help now.

Of course after any procedure with a low ejection fraction you may experience worsening symptoms while your heart recovers.  As I think I may have mentioned CRT can take time to work.  Unfortunately for some patients it may not help to bring their EF back up by itself and you may need extra help.  Yes do not give up but go easy until you find a doctor who can help to relieve your symptoms or explain to you honestly the limitations of treatment with a low ejection fraction.  

I understand your frustration, concern for the future, difficult symptoms.  I completely get it that you were feeling better before your new procedure amd therefore that you believe your new pacemaker is the problem and urgently needs adjusting.  It was the same for me too for several months but I did not have a low EF.  Can you seek another opinion or work with a technician until your settings can be adjusted to help better control your breathlessness.  Have you had further checks to look for fluid build up in the lungs following the procedure.  Go back to your doctors.  You need help now.  I wish you well