daughter's implant

Has anybody ever heard of a hospital ever putting in an incorrect pacemaker?  My daughter had a ddd pacemaker put in at 18 months, at 24 months it was realized that it wasn’t helping as anticipated so they went bi ventricular pacing which in turn helped out great, her cardiac output improved greatly, she had great energy, she went through multiple surgeries and did great, then at the age of 8 she was due for a replacement due to battery life. 

For some reason they went back to ddd pacing and to my knowledge we were not made aware of the change, after all this it did a lot of damage to her heart, and she could be facing possible transplant.  Just wanting to know if anybody has ever heard of anything like this?

3 Comments

Talk to your doc... and another.

by COBradyBunch - 2011-05-18 03:05:28

I would ask a billion questions in a case like yours both of the docs involved in the surgery and then I would go and get a 2nd opinion at least if not also a 3rd and 4th. And I agree with Frank completely. I fought my pacer implant and lucky for me I had a great nurse in the CICU who was my advocate. When she saw me flatline for close to 15 seconds however... she finally told me that it had to be done but she agreed I did the right thing by doing my homework and asking every single doc I saw a billion questions. Not all docs wanted to explain everything and work with me but the one who did my surgery and I see now did. He and I still negotiate my settings and care, but he knows in the long run the decisions, and consequences are mine.

Hope your little girl comes out okay with this. We will all be thinking of her.

Pacemaker change

by ElectricFrank - 2011-05-18 12:05:44

It's hard to say what caused the change in the pacer type.

The important thing is to insist on having her condition and all procedures explained to you before surgery. If you just let them decide you are taking a gamble as to what will happen.

frank

downgrade

by shockbox340 - 2011-05-23 12:05:35

Downgrades are not terribly common in the industry, but they do happen. Without knowing your daughter's history, my guess would be that her heart has strengthened and developed to the point that she no longer requires 100% pacing in the ventricles. If the heartbeat is conducting naturally from the top to the bottom of the heart, a Bi-V would (potentially) no longer be necessary.

Another factor would be battery longevity. If she doesn't need ventricular pacing any more, the dual chamber device will last years longer than the Bi-V device. Longevity is a big factor in younger patients. If the doctor can minimize the number of future surgeries without changing her quality of life, it's the right choice.

Again, hard to know for sure without knowing more details, but this actually sounds like your daughter's heart has improved - good news!

Best of luck to you and your daughter!

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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