A Dive into the Gene Pool

Genome_180_1 My family tree is a little bit diseased.  I mean, if we were actually a tree we’d probably be cut down.  But we’re people so we get to suffer through by way of adventures and tangles with the medical community.

I am a cancer survivor.  It was found quite by accident, though early, and after surgery and a short round of treatment I was declared cancer-free and have remained there.  The most interesting part of the experience was the fact that I’ve known for years, and have indicated as such on every form in every doctor’s office I’ve been to, that my family is rife with colon cancer.  What none of those doctors connected was the fact that this history could be an indicator for my cancer. 

Last year my Aunt underwent genetic testing as a result of her own experience with cancer and shared the results with the rest of the family.  What a shock (not) to learn that we are all at risk for a hereditary gene "mutation".  Not exactly earth shattering news given the multiple family plots.  So I pursued genetic testing on my own and, yes…I am a member of the family.  The upside of all this is awareness and a personal guide book on health care management. 

Remember when you looked to your doctor for all of the answers?  When you went to the office, got your physical, were proclaimed "healthy" and sent home for a year?  Or you found out you had something and they said "Here’s what we’re going to do"?  Nostalgic, isn’t it?  In today’s world of managed healthcare, medical office profitability studies and outrageous malpractice insurance costs the average doctor visit is 15 minutes. Most often those 15 minutes are spent with a Physician’s Assistant. It seems even the best doctors practice factory style these days.  My doctor’s office employs 11 Doctors, 9 Physican Assistants, 1 Physical Therapist, 1 Biofeedback Specialist and…get ready…47 in Office Staff.  It’s a long way from Drs. Turner and Rand in Plainview, New York.  They practiced out of a private home.  Two doctors, one nurse, one receptionist.

Each of us has to take an active role in our health care, maintenance and treatment.  It’s not enough to say "What’s wrong with me?"  We have to readjust our thinking and be prepared to research, to question and to challenge our doctors.  One of the most productive practices for me has been keeping a 3-ring binder of all my medical information.  I started it as soon as I was diagnosed and that binder now contains literally every scrap of paper, including notes, insurance claims, test results and prescriptions since October 2003.  It’s been enormousely helpful.

Years ago my AOL colleagues and I envisioned a world where we would manage our health records online and seamlessly transfer the information from doctor to doctor.  Of course this unearthed a multitude of security and privacy concerns.  Not to mention the daunting task of changing the behavior of care providers and introducing them to the joys of automated file management.  In the final analysis it became clear that if we regular people were to really get ourselves organized around our healthcare we would have to do it on our own.  Revolution Health is worth a look.  This new website was conceived and executed under the management of Steve Case and allows users to store their medical information and prepare and print documentation prior to doctor visits.  It also facilitates community so you can interact with people and share ideas, concerns and even treatment options.  Sometimes it’s a simple matter of giving someone the courage to get tested when they’d rather not hear the results.  Community can be a very powerful motivator.  I’m sure there’s more to say about the site, but I’m just starting to explore.

My mutation and I are getting along just fine.  We’ve readjusted our health maintenance plan and, armed with information, we know that we’ll be just fine.

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