What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).

So the focus has shifted yet again, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide helpful information and strength to others & will help to strip away the fears we each experience.

I am strong. I am loved. I am healthy. I WILL SURVIVE!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.


Tuesday, March 24, 2015

That's Absurd -- I Can't Access Data From My Implanted Defibrillator

You've heard me say this before, "Why don't I have immediate access to the wealth of data that my ICD generates, and in a timely manner????" Well, just change a few details here in this article from , like the name, dates, diagnosis, and most everything else is spot on. Well, not the part about buying the gadget on Ebay and learning how to program and collect the data myself. But Mr. Campos makes an excellent point, and describes it all so accurately. 

The Heart of the Matter

I can’t access the data generated by my implanted defibrillator. That’s absurd.

Campos’ devices.

Campos’ devices.

Photo by Gilles Frydman

As Mr. Campos states, 
"In addition to delivering electricity to the heart, the ICD also collects large amounts of data about itself and a patient’s clinical status. The data is momentarily kept in the device’s memory before being transmitted wirelessly to a bedside monitor. From there, it is sent via telephone lines to the device manufacturer for evaluation. This process, known as remote monitoring, happens automatically in the background, usually while the patient sleeps.

And I mean large amounts of data, such as how active I am (can't fudge what I tell the doc here), how much fluid I'm retaining, and so much about my heart, it's activities and irregularities, on a graph showing the exact dates and such. Learning this three to four months after the fact doesn't really give me any opportunity to react to it, or track what or why it is happening. Instead, I sit there in the cardiologists office and go, "Hmmm, what date was that again? Let me pull up my calendar and see what I was doing that day." If I've even logged anything down if it was a routine day with no appointments.

So let's make some noise about this. Tell your doctor about your concerns. Hopefully, in time, we will have continuous access to this information through an online website, or phone App, much like a patient with diabetes who has immediate access to their glucose levels so they can react accordingly with life saving measures.

Thank you Hugo Campos for this well written and informative article.

On Thursday, March 26, Future Tense—a partnership of Slate, New America, and Arizona State University—will hold an event on medical device security and privacy at the New America office in Washington, D.C. For more information and to RSVP, visit the New America website.

Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!

THANKS for visiting! I look forward to your comments.

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