strange new situation...

hello everyone,

 

I am posting on here today as I always get and see lovely messages on here and everyone likes to help everyone, so i thought this is the perfect place to ask. 

Over the past 4 months i have been in and out of hospital for investigations and check ups for a run of non sustained VT seen on an exercise test back in november. 

For this i was given an Upgrade to a Dual chamber pacemaker, i previously only had single chamber pacemakers since the age of 4 weeks old, i am now 17. my condition is Complete Congenital Autoimmune Heart Block (my mum has lupus which gave me antibodies that induced 3rd degree heart block in utero). 

Yesterday I had my 5 week pacemaker assessment where i also had an exercise test. on the test i had 2 ectopics in a row, but i was told this is normal, i had no VT. Basically the big discussion between my team at oxford, london and myself is what has caused this VT. There are two option, 1) is that the old single chamber pacemaker couldn't keep up with what my heart wanted to do, causing desynchrony and the non sustained VT occurred, during high exercise. Or option 2) My heart block is progressing and causing scar tissue to form in my heart, causing ventricular arrhythmia.

 

I have never heard of the second option before and in the 17 years of my life have never been told this is a possible issue. If the first option is the cause for the NSVT, then that is not an issue as i have the new dual chamber pacemaker now. If the second option is the cause, then i will need an ICD and close follow up as the heart block would be causing scar tissue to form over my heart. 

At the moment i am just being closely monitored, and will be having pacemaker checks in 3 weeks and a exercise and pacemaker check 2 months after that. 

I was wondering if anyone else has seen or experienced anything quite like this, it is a lot to take in and It would be nice to hear some opinions, thank you to anyone that read this,

Hayden


6 Comments

Non Sustained Ventricular Tachycardia (NSVT)

by Gemita - 2021-03-04 07:50:49

Hayden,

So that I can understand the situation a litle better, can you please tell me what was found on your pacemaker check downloads (if you were told).  Did they confirm you are still having episodes of non sustained VT and if so, how frequently are you getting these?  Also, did they discuss with you the possibility again of perhaps implanting an ICD in the future?  

Have you had any scans (MRI/CT with contrast) to look for any worsening of heart scar tissue or are they planning to arrange any further imaging in the near future?  I note your complex medical history of complete congenital auto immune heart block and your mother's diagnosis of Lupus.

Until your doctors have a better picture of what might be going on, I would try not to worry unduly Hayden.  NSVT can be quite a common finding for many of us.  It is certainly for me.  During your stress test, I note no VT was seen (very reassuring sign), although I see you had a run of ventricular ectopics which is perfectly normal as they say.  I get them often too but my dual lead pacemaker helps smooth them out. 

For the moment I would be relieved and happy that you are doing so well.  It is still early days with your dual chamber pacemaker and your doctors will want to see how it might help with your condition?  It may take a little time to show good results, bearing in mind that you have had a single lead all your life.  How are you feeling, by the way?  That is what really matters.  And how is your beta blocker treatment working.  Do you think it has made a difference and calmed things down a little?  Sorry lots of questions for you Hayden.

Anyway, I feel reassured that your team of doctors are taking good care of you.  I would have complete confidence that they will step in and help should you need it at any stage in the future.  In the meantime, I would be happy with what you have achieved so far and start planning for a productive life ahead.  

thank you for your message

by PacerPrice - 2021-03-04 13:27:27

Hello Gemita, 

Great too hear from you! Since my new pacemaker there has been no recorded activity or episodes of NSVT, the appointment was a month since the operation so this is really reassuring. They did not say i had had anymore VT, and they said none has been seen since the new pacemaker, only 2 ectopics in a row on the treadmill, which my doctor says can and most likely would be seen in anymore.

And yes the possibility of an ICD in the future was again discussed, the team have all said that if the cause for the VT was a progression in my heart block, and scar tissue that they cannot see is being formed, then i would have to have an ICD. This is quite concerning to me as the thought of an ICD at such a young age reslly isn't nice. But the doctors and the signs seem to be pointing towards the fact that the old single chamber pacemaker was to blame for the VT, as it couldn't catch up and control what my heart was trying to do during exercise ( i didn't know this could happen). 

In general i am feeling quite well, i do feel tired quite a lot but that i believe is mainly due to lockdown, not going outside, and my extremely bad sleep pattern ( not being able to sleep until late, and then waking up rather early). The nadolol i have been told can make you feel quite tired aswell, but when i become more active that will have less of an effect. 

Thank you so much as always for your help, you are really amazing,

Hayden 

 

It all sounds like good news so far

by Gemita - 2021-03-04 14:49:58

Hello Hayden,

No you and your Mum are the amazing ones.  I cannot believe how well you both have done and you certainly deserve to have a good life with everything you have both been through.

That is really good news to see no sign of any VT on your last pacemaker check and I would be even more reassured that your care is going in the right direction.  I suppose with your medical history and your mother's, the doctors have to be honest with you about all the possibilities.

It looks as though your doctors are saying that they cannot see scar tissue is being formed but if it were to form and your condition worsened (and you would certainly know about this from any symptoms and arrhythmias like VT) then they would have to consider placing an ICD.  But they are certainly not saying this now, are they?  So no need to worry unnecessarily.

Yes it is quite amazing what can happen when our heart chambers get out of sync.  It sounds as though they caught your problem at the right time and that a dual lead pacemaker may be just what you needed. You never know, once this has all settled down you might feel less tired.  It is still early days and you are having to adjust to the new pacing system and to all the concerns you have had over the last few months.  You have come a long way. And then there is Covid and isolation - what can any of us expect!  Have you had your vaccine?

By the way, I find beta blockers can upset my sleep patterns.  My husband has the same problem (he is on the same beta blocker - Bisoprolol).  Hopefully you will soon get a better night's sleep as you get out more and your activities increase.

Heart Block

by Selwyn - 2021-03-04 15:22:14

Hi Hayden,

A dual lead pacemaker is going to benefit you and the performance of your heart.  As you say, the most likely cause was desynchrony on exercise. A few ventricular ectopic beats are normal with exercise, and a few seconds of ventricular tachycardia is also counted as a normal finding. 

There is no further progression in heart block than complete heart block (3rd degree).  As your condition was caused by an in-utero happening, there is no reason to suspect progress of an underlying condition ( unless there is something new cropping up). I think you can safely relax about option (2). Like you, I have never heard of heart block progressing beyond complete heart block (hence the name!). Heart block is due to damage of the conducting tissue of the heart. Nothing more.

Go and test out your new PM. There are many people in this club that are sporty.  The sky is the limit - even sky diving!

 

I'm confused

by AgentX86 - 2021-03-04 17:00:37

How does a single lead pacemaker deal with third degree heart block without A/V dyssynchrony? It seems that a two-lead pacemaker is the solution. It baffles me why a two-lead pacemaker wasn't used long ago.  It should take care of everything.

Ectopics generally are  nothing. The name really means nothing though. It could be pretty much anything. Almost everyone gets them. If most aren't felt and the few who do feel them ignore them as a figment of their imagination.

 

thank you all

by PacerPrice - 2021-03-05 13:40:11

Thank you al for your comments. as you have all said i think the dual lead pacemaker is definitely helping a lot as it has got rid of the a/v desynchrony. 

I am really not sure how it is possible my condition could have developed, as 3rd degree heart block is the highest degree of the condition. and as for scar tissue that cannot be seen, i'm not sure how that can happen or cause an issue. 

The team have said they are keeping a close eye to monitor if their is anymore NSVT "episodes", but they are al very confident the introduction of a dual lead set up should have solved the issue, and the single lead pacemaker was too blame. 

Thank you all for your help! 

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