RV lead/ablation/pericarditis

I have been taking Colchicine since my appointment August 24th for "post ablation pericarditis". In the office I was having so many PVCs the machine was alerting for pauses and bradycardia 35-51 bpm. I called yesterday because of continued chest/back pain and some tachy episodes. I'm also having large drops (30-40) in heart rate while upright that I am symptomatic during. I got a call back saying that he had prescribed 60mg prednisone for a week. Honestly, I'm scared! I have never taken a steroid, and it seems like somewhat of a high dose.

At my follow up he showed me what looked like a moving x-ray. He said he can't say with certainty, but it looks like my RV lead is rubbing on the outside of my atrium as my heart beats. ALMOST EXACTLY where the arrhythmias were coming from during the EP study/ablation. He says that the placement of both leads isn't optimal for my heart and both have far too much slack. He sent me out after the ablation with a base rate of 30 bmp to try to force CLS only pacing, and it was still 28% at 2 weeks post op. I'm also now noticing my heartrate on my watch dipping to the 40s at night/50s during the day(which never happened preablation).  I feel that we know for a fact that I need the pacemaker.. 15 second pauses, fainting within a week of CLS being turned off, these new lower heart rates and drops... but he still for some reason my body would be better off without a pacemaker. Unless there is something I am missing, I don't know how we are back to having that as an option.

I've been dealing with this uncomfortable sensation (I wouldn't call it pain until the last week) off and on for a year. If this is a lead issue, it seems like it needs either fixed or removed, sooner rather than later.. if this is from the ablation, you couldnt pay me to have another one! Hopefully the steroids give some relief and I will follow up with him at the end of October.

If you've made it this far, thanks for reading while I vent..

 


10 Comments

Pericarditis

by Lavender - 2023-09-14 09:09:17

Hi Mae, My empathies in your situation. Pericarditis was the worst thing that I have ever experienced. It started out milder for me and when a PA prescribed steroids, it got much worse. My cardiologist was angry that they had prescribed prednisone. She said it's not indicated as first line treatment for pericarditis. She got me on nine months of colchicine along with 3200 mg daily ibuprofen taken as 800mg at a time. I had to take carafate to coat the stomach and prilosec was added along the way. It ruined my stomach but it got rid of the pericarditis. I was told that it could reoccur, but I never had it again so far. Steroids may increase the likelihood of reoccurrence, I believe. 

I wonder if the moving xray you saw was your echocardiogram.  I would want a second opinion. If your heart pauses for 15 seconds, you need that pacemaker. 

 

ask to be seen sooner

by Tracey_E - 2023-09-14 09:10:25

I would not wait until October, ask to be seen sooner. If chest pain changes, go to the ER. 

If your base rate is 30, that would explain the drops. I don't have CLS so am not as familiar with it, but if you need pacing, it would make sense to me that you'd set it to pace? 30 is essentially turning it off. 

Yes if you have a lead issue, moving it sooner than later is best.  The longer it is in place, the more scar tissue will hold it.

Pericarditis can take a long time to heal and will complicate things. They may not want to move the lead until it heals? You might want a second opinion. 

 

Also

by Lavender - 2023-09-14 09:53:40

I had pericarditis several years ago. Perhaps prescribing criteria has changed since then so I can't second guess what your own doctor recommended. I can only say what happened in my case. 

Rock and a hard place

by Mae11 - 2023-09-14 09:54:46

I honestly feel like I am stuck between a rock and a hard place.. something is telling me not to take the prednisone, but also don't want to not take it and end up in the ER having to say my doctor prescribed me medicine but I didn't comply. I am home alone during the day, already feeling both tachy/brady (and prednisone is known to cause both), and have to drive my kids to and from school 20 minutes away.

I called back yesterday just wanting a little more clarity why he prescribed it and to voice my concerns. My RP is in surgery today and won't be back in the EP clinic until next Thursday(he has an advances cardiology office as well that he's in every other day, but they won't see people with devices). 

My thought are similar to Tracey's..

Raise the base rate, maybe add rate smoothing or something, and let my heart heal in peace not struggle with the ups and downs and keeping up.

I don't want to be a pain, but if there is something that can be done to ease things settings wise it seems like we should.

💕

by Lavender - 2023-09-14 10:16:08

Hopefully someone will get back to you today and allay your concerns. If I understand right, you haven't been seen in person in three weeks. You called in and the dr called a prescription in. Surely they see emergency patients in office? My cardio office has physician assistants who see patients when the dr is busy. 
 

I thought you had turned a corner

by Gemita - 2023-09-14 11:43:04

Mae, I am very sorry to read your latest post when I thought you had at last turned a corner and that things were heading in the right direction for you.  As I mentioned in your previous post, the healing period following an ablation can take up to 6 months arrhythmia wise and I know that inflammation following an ablation can also last for some 3 months or more too.  Any inflammation can certainly cause worsening arrhythmias.  Unfortunately some of us pay a heavy price to try to rid ourselves of an arrhythmia, but all may not be lost following your ablation, if you trust your doctors and get effective treatment for your pericarditis.  

Prednisone is usually used when a patient cannot tolerate their symptoms or if there is no improvement in symptoms/condition on Colchicine.  Has there been any improvement Mae?  That is the question you need to ask yourself.  If there has and you are able to tolerate your inflammatory symptoms, you could always ask whether you could safely remain on Colchicine for a little while longer if you don't want to take steroids.  Of course the doctors are going to try to relieve your symptoms as quickly as possible, why wouldn’t they, so only you will know how bad your symptoms are and whether they warrant a stronger anti inflammatory.  Prednisone will definitely dampen the inflammation but it comes with side effects.  Have they tested your blood for inflammatory markers (CRP levels) and are these levels coming down Mae.  If so, you may wish to wait a little longer?

As to your rhythm disturbances, a low heart rate will certainly trigger ectopics like PVCs and in my opinion, your lower rate limit needs raising and quickly to relieve your symptoms.  There is no harm in trying anyway.  Rate smoothing will also help but may take time to adjust this setting to suit you.  You will be better off raising your lower rate limit to begin with.  That should give you some relief and if it doesn't you can always immediately lower it.

Lead or pericarditis? Or both??

by Mae11 - 2023-09-14 13:19:39

My CRP has only been tested once back in February and was 0.3, within normal range. He initially thought the chest pain was pericarditis because of the positional nature of it. Because of the CRP being within range and the stimulation under my left breast, he came to the conclusion that it was most likely the lead causing the discomfort. CRP has not been tested after the ablation.

I have three main concerns or questions..

1. Is it pericarditis, the lead, or the lead causing pericarditis?

2. If it is the friction of the lead rubbing, will any medication relieve the symptoms?

3. Was the ablation actually needed if the lead rubbing was, atleast in part, causing the arrhythmias?

I'm not sure if my questions are valid or even makes sense..

Your questions are all valid and make a great deal of sense

by Gemita - 2023-09-14 14:39:35

Mae, I picking up a lot of doubt and I wish I could reassure you that the treatment you have so far received has been appropriate for you?  I know you are feeling unwell and not wanting to seek a second opinion but I really feel if you have the strength to do so, it might be the best approach.  With so many questions, how on earth can you move forward confidently anymore.  

I am shocked that they have not ordered further checks to see how much inflammation you have and whether steroids are now required. I know ER isn’t the best place but sometimes we can get a full set of bloods done to rule out infection, inflammation and other acute problems with the heart and this is what I would try to do Mae, especially if you have worrying chest discomfort.  They could certainly rule in or out continuing inflammation and tell you whether steroids are really needed?  You could also push for further tests.  After all, we cannot mess with the heart.  We only have one heart and we need to keep it safe. 

Take your three questions to ER or to another doctor and the earlier, the better.  They are excellent questions and deserve to be raised and to be answered.

Third question

by Lavender - 2023-09-14 16:33:28

Was the ablation actually needed if the lead rubbing was, atleast in part, causing the arrhythmias?
 

At this point, it doesn't matter because you already got the ablation. I doubt if any doctor would tell you after the fact that this procedure wasn't actually needed. 

100% right

by Mae11 - 2023-09-14 16:39:41

You are absolutely right, Lavender! What's done is done..

You as well, Gemita. I'm surprised it wasn't tested too. I would much rather hold off on the ER if possible. If I did go it would be to the major one about an hour away. I want to hear his explanation of these things before jumping to see anyone else, but certainly can't wait until October.

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