My defibrillator came with a bedside device that wirelessly communicates with the AICD, and transmits information by telephone automatically every three months to my electro-cardiologist. If there is a problem with the defibrillator such a lead coming lose or a sudden battery drain or anything out of the ordinary, it will transmit to the device and the device will then call in the problem. When ever the device sends in a transmission, I receive an email from Medtronic, the defibrillator’s manufacturer, that a transmission was received.
I received an email at 11:30PM that my device sent a transmission on its own last night. That was cause for concern. Firstly, I just had the device interrogated last week and secondly the transmission was sent at 11:30PM. My next transmission is not due until April and automatic transmissions are sent between 1:00AM and 5:00AM. So there I sat in bed last night wondering if something was wrong with my little buddy in my chest. Turns out when I called the clinic, nothing was wrong. The clinic forgot to reprogram the transmission for April.
The person that maintains the blog “ICD Users Group” has been tweeting for sometime about how he does not like the automatic transmissions, but more importantly about the need for ICD patients to have access to their own ICD transmission information. The information is readily available, but you have to ask for it, or wait for your doctor to interpret the transmission. What he wants, and which I totally agree with, is for ICD patients to have instant access to our transmission data. We should be able to sign onto the manufacturer’s web site and see what’s going on with our ICDs if we want, and not wait for the doctors to look at the report, or better yet, see the info directly on our smart phones.
If I did have a lead come lose last night, that is a potentially fatal occurrence and it’s something I should know about right away. The same way that medtronic sends me an email to say that the ICD made a transmission, there should be some basic information about the transmission. Was it a routine transmission? Was there a problem with the leads? Is the battery low? Something. When I am finished writing this blog entry, I’m going to write to my ICD manufacturer about implementing such information availability to patients. Maybe I can start a revolution.
I am a professional chef that loves writing and photography. I was also diagnosed with pulmonary and cardiac sarcoidosis. This blog is a place to share my experiences and photography.
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