Upgrade pacemaker

Hi IMy daughter is 17 years old, with complete hear block. He got a dual chamber pacemaker at 13 years. Her consultant wants to upgrade her pacemaker due to low exercise tolerance well below that of someone her age and in case the dual chamber will cause heart damage in the future due to the slight delay in heart beat synchronisation across her heart. She does get on with normal life, though no sports and does get tired easily. She is paced 100% and totally dependent on it. He is proposing to attempt direct His bundle pacing which is technically difficult and if this cannot be achieved to move onto biventricular pacing. I was wondering if anyone in the pacemaker club had any of these procedures and had any views on them. I don't know what to do and the op is scheduled for next month. I would be grateful for comments.

2 Comments

There are members...

by donr - 2012-10-22 09:10:47

...who have had that procedure. Hang in there - they'll be around as soon as they wake up. AT least three of them who are regulars.

Don

exercise tolerance

by Tracey_E - 2012-10-22 10:10:10

I don’t know much about his bundle pacing but fixing an av block with a regular dual chambered pm should not be that complicated. Does she have a problem with synchronization now or are they worried about it in the future? Is her EF normal?

I have congenital av block also. I’ve had problems from time to time with exercise tolerance but it’s been fixed each time by modifying the settings. It didn’t happen first try, I went back multiple times and they continued to tweak it. I’ve gotten on the treadmill several times while on the pm computer so they could watch what happened on exertion. Once they were stumped and sent my records to the engineers at St Judes who made me a case study, they came back a few days later with recommended settings. Sometimes I still hit a wall but for the most part I can do anything I want now.

I guess I’m saying don’t give up and resort to surgery easily, exhaust all your other options first. Most drs don’t have many young active patients so a lot of what they do with us is educated guesses. At a minimum, I’d get a second opinion before proceeding.

Another thought, have they ruled out other conditions? We have another young member here, she’s 18 now, has been paced for CCHB since birth. She’s in college now and doesn’t check in very often. Her original diagnosis was only the heart block but after her exercise tolerance got worse and worse, she ended up getting another opinion at a bigger university hospital and they determined she has POTS.

Hopefully Inga (snitch) will see this and chime in. She’s on top of all the latest research on His bundle pacing and synchronization.

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

Member Quotes

So, my advice is to go about your daily routine and forget that you have a pacemaker implanted in your body.