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Like many others who have pacemakers & ICD’s, I would like to see my readouts. There aren’t technology barriers that make this impossible now, but there are those doctor’s fees & lab charges that continue to collect every time you go to your cardiologist and have the Medtronic tech give you the readout. They seem to have a program that can pinpoint things like bouts of AFIB, so why can’t you see it on your home computer or Android phone?

If patients had access to their data then they could better control their exercise and overall health. In my case my pacemaker is rarely active, less than 0.5 percent of the time. It has kicked in a few times after my heart rate dropped below 50 bpm while sleeping so it’s really more valuable as a continual monitor of how my heart is behaving post surgery than as an absolutely necessary device. Many athletes do fine with lower resting heart rates, and I’m in pretty good shape for someone who has had a quintuple bypass since I walk miles every single day.

My real worry is not my heart beating too slow, but rather my brief but dangerous bouts of Atrial Fibrillation. While AFIB won’t necessarily slow you down, it can cause clotting of blood in the fluttering upper chambers of your heart, which in turn can cause you lots of problems depending on where those clots end up flowing to and sticking; but the main worry would be a stroke.

If I have access to my readouts I can start trying to determine what’s leading up to those moments, whether it be overexercise, something I ate, or other things. If I can see the when of those moments then I’ve got the first handle on determining what factors control them. If I wait until the factory tech does my read out, then I’m blind. What did you have for breakfast Friday, 5 months ago, and what were you doing at 12:25? I can’t remember, but if I can check once a a week or once a day, then I can figure some things out.

Doing that would be helpful, because if it’s over exertion, over eating, or diet I can control those things. Medtronic: let us read our Data!

Each year, tens of thousands of Americans are implanted with tiny battery-controlled devices that regulate the beating of their hearts. Those devices transmit streams of medical data directly to doctors.

But some patients, like Hugo Campos of San Francisco, fear they’re being kept out of the loop.

Campos has a genetic heart disease called hypertrophic cardiomyopathy, which means the muscles of his heart are too thick. It’s the same disease that causes 17-year-olds to suddenly drop dead on the soccer field.

A few years ago, the disease was diagnosed, and Campos was implanted with an ICD — an implantable cardioverter-defibrillator. The device saved his life one morning when he nearly collapsed on the street.

At first he felt weak, like he was going to pass out. But as his heart went into overdrive, the device kicked in, coaxing his heart back to its normal rhythm.

“You feel the blood rushing to your head,” Campos says. “It feels great. Life feels great.”

Campos has had other scares since then. He lives in constant proximity to death. And that’s left him with a powerful desire to know everything about his health. He wears a FitBit pedometer, sleeps with a sleep monitor, and checks his blood pressure constantly.

But unlike those devices, the ICD is a mystery to him.

That’s because even though Campos’ ICD can wirelessly transmit data twice a day about his heart and the ICD itself, that information goes only to his doctor. Campos has to make an appointment and ask for a printout. And that, he says, just doesn’t seem fair.