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coaching, community, digital media, elder wisdom, epatients, health 2.0, Just Oncology, legacy, medicine, participatory medicine, social media
On January 7, 2011, my lifestyle was changed forever. The good news was open heart surgery saved my life. And no heart damage was discovered. On the other hand, I had to give myself permission to take care of myself. What a novel concept! My entire life had been based on the premise that Richard’s health came last.
At first, I was overwhelmed, which led to anxiety and depression. The thought that I could die crossed my mind, but this seemed remote and I didn’t dwell on it. When pain resolved, I was left with fatigue which is slowly improving. I completed cardiac rehab and went back to the gym after a nuclear stress test was normal 10 days ago. But even exercise is different now; almost all aerobics and little lifting whereas I used to squat up to 405 lbs. and had the body habitus of a power lifter. In the distant past I ran 7 marathons with hardly any resistance training. Always pushing myself on the extremes; never taking the middle road.
And see a doctor? Rarely. No time! Too busy taking care of everyone else. Initially my attitude was I’d work until I dropped. Almost did just that. Never thought of retiring until now. Back to work part-time with no plans to work full-time. But now have more devices than I thought imaginable for 1 human being:
- Pericardial tissue from a cow for a new aortic valve.
- 3 bypass grafts from my left internal mammary artery, left radial artery, and right saphenous vein for new coronary arteries.
- Continuous glucose monitoring by implantable sensors inserted weekly into my abdominal wall.
- Insulin pump via implants placed every 3 days into various sites allowing continuous basal flow and bolus administration of insulin when eating or hyperglycemic.
- Blood pressure cuff.
- Loop recorder inserted into chest wall to monitor for arrhythmias.
This is in addition to multiple pills, each of which has its individual requirements, daily weights, etc. All this requires time and learning curves, and was unfamiliar to me. But I found the most frustrating and irritating chore to be calculating the breakdown of ingredients of foods ingested, e.g., carbohydrates, sodium, fats, et.al. Most of the time, it’s a guess. Life has become all about monitoring me….continuously!
I was therefore interested to read an article entitled: “Smart Moves? E-patient Systems Rise Amid Skepticism” by Andrew D. Smith in the current issue of OncLive; 12,6; pp 15-20, 6.11 about disease management systems in oncology. The concept started with cardiology and spread to diabetes management, obviously pertinent to my experience. Since several cancers are now regarded as chronic illnesses the concept intuitively makes sense even though triumphs in improved outcomes and/or reduced costs are few so far. It is estimated that “nearly a fifth of cancer patients already use some form of DM and, collectively, spend $250 million a year on it”. Annual revenues for the total industry are about $5 billion.
The backbone of DM has been follow-up visits in doctors’ offices or at home, and telephone calls by nurses. Insurance companies have created Call Centers staffed by nurses for the same purpose. My wife and I appreciated the 6 weekly home visits and phone calls by visiting nurses; especially my wife who was my primary caregiver and needed reassurance that she was covering all bases. But cancer care is a bit more complicated since cancer patients are generally older and have all of my co-morbidities that require monitoring and knowledge of drug-drug interactions. We have entered the era of oral chemotherapeutic agents administered on a daily basis at home. So danger of lack of compliance has increased greatly. To address this, the NCI paid Leap of Faith Technologies “to develop a system that uses smart phones, radio-frequency identification technology, and the Internet to ensure patients take their medication”. The result is eMedonline, which resembles my wife’s iPhone with an attachment which she uses to swipe her client’s credit cards through to pay for their encounters. Works like a charm. With eMedonline, a vial of pills is swiped over the attachment to the smart phone whenever a dose is taken. Preliminary trials have demonstrated increased compliance to >95% and it “is ready for commercial use”.
My 8 year old granddaughter is fascinated by my diabetes care. She has 2 juvenile diabetics in her class and watched me prepare and inject insulin. Now that I have the pump, injections are no longer needed. She hasn’t seen the pump yet, but has watched me upload data from my continuous glucose monitor (CGM) to software on my computer which in turn can be e-mailed or FAX’d to my physician. But with proliferation of all these systems generating an enormous amount of data, it is imperative we develop new data analysis software to make sense of all this. I see the data generated by my CGM and it is indeed voluminous.
Finally, in the realm of science fiction are implanted nanoparticles coated with antibodies that detect tumor biomarkers. It’s coming! I initially was turned off when my body became a pin cushion and my entire day seemed to be consumed with data entry, device management, ordering of supplies and on and on. I am beginning to gain better control of all my co-morbities (I hate that term). I recall the admonition of my surgeon: “I’ve given you 15-20 more years. Now don’t screw it up”. Hopefully, with the aid of newer and more sophisticated DM technologies, I will also be able to say this to my cancer patients, soon.
@justOncology 