PM scheduled for 27/11/19
Follow up to my first post titled "CONGENITAL COMPLETE HEART BLOCK FOUND AT 23".
Link: https://pacemakerclub.com/message/36013/congenital-complete-heart-block-found-at-23.
Hi all so if you read my first post you'll know I was recently diagnosed with Congenital Complete Heart Block which was a random finding on an ECG! The initial plan was to go through the wait and watch approach and wait for my symptoms to worsen before getting the PM which i was not a fan of! However last night i felt extremely dizzy and decided to check my heart rate and it was sitting at a cool 35bpm which led to a trip to A and E. I went to a different hospital with a fantastic cardiology ward and they got me in for testing and subsequently an immediate pacemaker treatment for today! I was elated to find this out and went through the entire process of concent forms, pre op... And they decided to cancel the procedure at the last second as they are waiting for a brand new 2019 pacemaker where the leads dont go into the generic place to avoid further heart damage in the future as I will have this all my life! So the procedure has been rescheduled for Wednesday the 27th of this month and I'm so excited and nervous! Im glad they finally listened considering my heart rate was getting into the low 30s and was accompanied by some serious dizzy spells! Has anyone else got their leads in the "non generic" location? Any advice for the procedure? All reassurances welcome, will soon be a member of the club.
Tom
7 Comments
More information is needed
by AgentX86 - 2019-11-22 15:56:30
First, welcome to the club. The first thing you're going to learn is that we need information before we can give any. Each one of us is different and so are our treatments. The more information that you can give us, the more we can help. Maybe. ;-)
When you talk about a "new pacemaker" it would be helpful to know more. The "further heart damage" sounds like they're going to use a CRT-P or the "non-generic location" sounds like they're going to place the lead in the "bundle of His". Neither of these is particularly new. There are several of us in both camps (CRT-P, in my case).
If it's something different, all of us here would like to know more!
Again, welcome to the group that you didn't want any part of.
HIS bundle pacing?
by Tracey_E - 2019-11-22 17:07:42
Glad to hear they are taking it more seriously! 35 is not cool, be careful.
They aren't talking about a Micra, are they? That's leadless which sounds great but isn't necessarily a good choice for CCHB. Or they could mean HIS bundle pacing, which isn't a different pacer, it's a different way of placing the leads and it is a lot easier on the heart than the traditional way of placing leads.
I think you're right Tracey
by Tommy1996 - 2019-11-22 17:49:29
Yes Tracey that's how they explained it I think you're correct it may be HIS bundle pacing, but they definitely said they need this new funky pacemaker which doesn't arrive until Wednesdays. They mentioned that this would not only regulate my heart rate but would also create a synchronicity between the top and bottom Chambers of the heart? It all sounds very high tech and under control so I'm just keen to get it fitted!
Need to push for His-bundle pacing
by crustyg - 2019-11-22 18:23:44
Hi: As I've said before, at your age you need to push for His-bundle pacing.
Nothing else is good enough.
If they can't guarantee His-bundle implantation then go somewhere else where they are in the 21st century.
Good to know!
by Tommy1996 - 2019-11-22 18:49:23
Good to know im having the optimal/most modern procedure for the condition! Honestly just cannot wait to see my heart rate go from high 30s to something somewhat normal! Does anyone know what theyll start my minimum settings on? Will i have any sort of say in this? Thanks!
They will start with the usual settings
by crustyg - 2019-11-22 20:22:27
Probably 50/130 or similar, and review after 4-6weeks.
After being used to a resting HR of 38 or so, 50 will feel like magic - or perhaps just much more pleasant. Try to discourage them from a lower rate much higher than 50 - at your age you don't need much more if your heart muscle is healthy.
More normal? If you're athletic, low 40s might be *normal* for you. There's really no such thing as *normal*. Appropriate for your age and lifestyle would be more apposite.
More important is the pacing strategy. With a BostonSci unit, DDDR with RhythmiIQ would be most sensible (atrial paced whenever possible, with ventricular pacing whenever needed). They need to pace your RA if AV conduction is working (which for you it does, sometimes) and His-bundle when not. But somewhere along the line you will want a decent vent-rate for your age+lifestyle, which will probably be 160-180bpm which is too fast for an Atrial-then-Vent pacing strategy. You need to talk to your EP doc about this.
Make sure that they understand that the Number 1 priority is your cardiac output (==HR) when needed, and everything else follows from that, *NOT* what's most convenient for them to set up and monitor.
Only you can be your own advocate about this. You need to negotiate/charm/bully your EP team to give you what you *need* and not what they might think is safe/acceptable/routine for you. You won't get it all in one go. I don't think most EP docs will give you 180 max HR from implantation, you need to let the leads bed in for a few weeks.
'Have I any sort of say in this?' - YES. Once your EP doc accepts that you understand the implications of what's being offered/discussed, then they will be more open to negotiate the details of your treatment - PM or not.
You know you're wired when...
You name your daughter Synchronicity.
Member Quotes
I feel so blessed to have this little gem implanted in me. When I think of the alternative it is quite overwhelming sometimes.
The good news is...
by Theknotguy - 2019-11-22 15:49:03
The good news is there are advances in heart disease treatment all the time. It happens so fast it is almost impossible to keep up with all the positive changes. My pacemaker manufacturer, Medtronic, has come out with some new units that work better with the bundle of HIS in the heart. Supposed to help the heart beat better and there are a lot of other changes. I don't have the particulars but I know they are there as I talked with a Medtronic's rep this past week.
I've had my pacemaker for six years now. It was state of the art six years ago and now is obsolete. So I'm looking forward to when they can swap out my unit for a newer one with all the bells and whistles.
Hope you can be taken care of soon.