Journal

The DVT Awareness Month has been a slight bit of a let down this year.  Other then a couple of Melanie Bloom appearances on TV and news articles, it was pretty much low key. 

The local hospital did do an article in their local newsletter about signs and symptoms about DVT's but didn't mention the awareness month specifically.  The had contacted me asking for a quote to use in their article (http://www.backushospital.org/know-the-signs-of-deep-vein-thrombosis.html)

Beyond that, all was quiet even in my little corner of the State.

Oh well, guess it's time to focus on getting ready for the Mountain Bike and Trout Fishing Season; if the warmer weather ever makes it's presence.

The end of September marks the 13th anniversary of my last DVT. A lot has changed since 1995.  First, there are now on-line forums throughout the web where patients can go to ask questions and discuss their medical conditions.  With that in mind I wanted to put together a timeline discussing major advances in DVT and PE awareness.  There are other important milestones during this timeline, but I wanted to point out the most significant ones:

1997 - Barbara Krultz of Wisconsin starts the first DVT/PE on-line email forum.  In late 1997, the website went off-line due to loss of server.

1998 - Deb Smith, a member of Barbara Krultz' forum started the fvleiden.org web page.  Both Deb and I met through Barb's forum so I immediately signed on as a member of the fvleiden.org webpage.

2001 - The Centers for Disease Control and Prevent (CDC) called together thrombophilia patients and specialists to discuss the needs and support of blood clot and blood clot disorder patients.  Through this meeting, which I was invited to attend but couldn't, Deb met Dr. Stephan Moll of the University of Chapel Hill in North Carolinia.  Stephan is a top specialist in the treatment of blood clots.  As a result of this meeting he collaberated with Deb to host an "Ask the Doctor" section on the fvleiden.org webpage. 

2003 - The Centers for Disease Control and Prevention (CDC) formed a Steering Committee made up of DVT and Thrombophilia Patients and Healthcare Specialists.  This Steering Committee performed a year long needs assessment study to determine what needs to be done to better help patients and their families.

Also in 2003, Sanofi-Aventis Pharmaceuticals (manufacturers of Lovenox) created the Coalition to Prevent DVT.  The Coalition consisted of 60 healthcare organizations brought together to create a national awareness campaign during the Month of March.

2004 - After reporting the finding of the needs assessment study, the National Alliance for Thrombosis and Thrombophilia (NATT) was born.  NATT is a patient based, volunteer, non-profit Patient Advocacy Organization.  In March 2004, NATT held their first Patient Education Forum in Denver, Colorado

2005 - The DVT Coalition held their first DVT Awareness Month Campaign.  NATT joins the Coalition as the only Patient Advocacy Organization.

2006 - The Governor of Connecticut declares November 2006 as Thrombosis Awareness Month. This action led to the States of Massachusetts and Maine to also designed an awareness month in 2008.

2007 - The first major grant to raise public awareness about blood clots and blood clot disorders is issues to the National Alliance for Thrombosis and Thrombophilia (NATT).  Through this collaberative grant, NATT, along with the CDC further enhances public awareness through a Stop-the-Clot patient forum. 

Also in 2007, the U.S. Surgeon General meets with NATT and members the healthcare community.  The results of this meeting help to create a Call to Action which will be issued in 2008 to better raise awareness about DVT and PE.

2008:
March - Medicare/Medicaid approve Home INR Machines for DVT patients.

May - President Bush signed the Genetic Information Non-Discrimination Act (GINA).  This act prevents employers from discriminating against employees with genetic disorders.

June - NATT is also asked to work with members of the healthcare community to create a national consensus regarding yearly events of blood clots within the U.S.

Also in June, Medicare and Medicaid declare DVT as a no incident event at hospitals.  What this means is, if a DVT/PE occurs while a patient is hospitalized for another medical condition/procedure, it will not pay for reimbursement to the hospital.  This position enforces measures that hospitals take all appropriate prophylaxis measures to ensure that a blood clot does not araise while a patients is hospitalized.

September - The U.S. Surgeon General release his "Call to Action" to prevent DVT and PE.

Again, I have now remained clot-free for the past thirteen years.  It's been a long interesting road up to this point with many a surprises.  My own quest for knowledge has helped to to better improve the chances for not only my own children who have inherited my clotting disorder, but also for the entire country.

Borrowing from my friend Dero, there is "Life after DVT".