THIRTEEN YEARS AFTER THE CLOT

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 along with the medical community.

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 - A Steering Committee comprised of patients meets with the Centers for Disease Control and Prevention to report the finding of the needs assessment study. As a result of the study, the single biggest need identified was for the creation of a Patient Advocacy Organization to be established to represent the patients and their families and to raise public awareness about this deadly medical condition. 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. Since that date, NATT annual has held between 3 to 4 seminars per year.

Also in 2004, 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 government funded 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 and creation of brochures.

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 do 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".

Regards,
Tom Hogan
Secretary and Treasurer and co-founder
National Alliance for Thrombosis and Thrombophilia (NATT)

Hi Tom,

Thanks for sharing this fantastic and informative timeline!

And congratulations on your 13th anniversary since you last DVT!

All the best!

Thanks so much for giving us the background on Thrombosis milestones. It's amazing how one event can change your life! My massive DVT was 7 years ago (2001) - and I felt so alone when I had it. I wish I would have found a forum where I could ask questions, vent my anger, and learn more than just my doctors told me (which was basically nothing). I STILL have questions, as I still deal with my clot daily (it's just too big to remove). Thank goodness I had a medical background (I'm a medical librarian / pharmacist for goodness sake) - so I was able to do a lot of research for myself. I'm so thrilled that these forums now exist so people all over the world can benefit from the experiences of others who have been through the same thing.

Hi Michelle, fellow Ottawans (or some like that...)
Good to see you back. One thing, I was wondering Michelle is: being a medical librarian, do you know of any info that is NOT here already and that you know would be usefull to everybody, new and old?

Hello RetiredNavy: I read that your children have inherited your clotting disorder. Can you please tell me the process that has revealed this. I have yet to have some of the blood tests for Factor V, Protein S, etc . since these must be done with no coumadin in the blood. Are these some of the tests that have proved positive on yourself AND you children? Debbie.

Debbie,

Here is some general guidance from a friend of mine who is a leading researcher here in the U.S:

http://fvleiden.org/ask/40.html

Some brochures which my organization created concerning this topic:

http://stoptheclot.org/natt_publications/fam_test.pdf

http://stoptheclot.org/natt_publications/genetics_thrombo.pdf

I was diagnosed with Factor V Leiden in 1996. Being homozgyous (two genes) I knew my children would inherit one gene (heterozygous) but I still had them test to rule out any other clotting disorders inherited from my wife (her family is all Factor VIII Hemophiliacs). In a way, we were hoping they may have inherited the hemaphilia to counteract with the thrombophilia but this wasn't the case. So anyways, that's why we had them tested.

Feel free to ask any specific questions, I am involved in Patient Advocacy on a national level here in the U.S.

Regards,
Tom in Connecticut

Thank you Tom, these sites have been very helpful. I am going this week for the blood tests - I will have been off all coumadin for 7 days. But the hematologist instructed me to then go back on coumadin until the results are in. My blood requisition says Protein C and S - which looks like those will determine the Factor V. The other test is antiphospholipid AB - I'm not sure what that reveals as for predisposition. I am curious about something though, I had a blood transfusion in 2002 after a sinus surgeon nicked an artery - I received 3 units. Could this "outside" blood have brought in abnormal factors to my blood chemistry?
I have 2 daughters, one of which is pregnant now. Both didn't get along with birth control pills which might have been a blessing if they have clotting disorders. All this will be good to know for our future health. Debbie in Toronto, Canada.

Debbie,

In addition to Protein C and S, the following tests should also be performed (about 8-10 tubes of blood taken)

"Standard tests":
- factor V Leiden genetic test
- prothrombin 20210 mutation genetic test
- protein C activity
- protein S activity and total and free protein S antigen
- antithrombin III activity
- antiphospholipid antibodies, consisting of:
- lupus anticoagulant
- anticardiolipin IgG and IgM antibodies
- homocysteine level

If there is a family history of DVT, then these tests should also be performed:

- thrombin clot time
- fibrinogen activity
- fibrinogen immunoelectrophoresis
- plasminogen activity

As far as blood transfusions, virus' and infections can be transmitted (Hepatitus, AIDs, etc.), however, since clotting disorders are a genetic condition, this is not transfered. A lot of people with clotting disorders think they can not donate but; they can. Is it while they are on anticoagulant medication that they can not donate blood. Once off these medications for a small period of time, they can donate again.

Regards,
Tom

Tom: Why is it that doctors don't feel the need to educate patients about ALL aspects of DVT's and PE's? Thank goodness for these forums where all can learn from the knowledge and research of others.
At the age of 50 I now recognize that it was (somewhat) reckless of my doctor to hand over samples of birth control pills - and equally stupid of me to take them. The GP continues to discount the connection and I can't help but think that my experience should be recorded so that this cause/effect could be added to the statistical data that proves this correlation. The whole "fad" of using HRT for menapausal women seems to run hot and then cold - it appears to becoming popular again - but at what cost???
Debbie.

Debbie,

There definitely is a lot of lack of knowledge about DVT/PE prevention not only in the general public but also within the medical community. There are organization like NATT who are tackling this issue along with several healthcare professional organizations (DVT Coalitoin, Venous Disease Coalition, North American Thrombosis Forum, and, in Canada, The Thrombosis Interest Group of Canada (TIGC). I am not that all too family with the TIGC, I believe Dero may have more insight.

Regards,
Tom in Connecticut

Hi Tom,
yes I do have some info on TICG,
I have talk to some of the admins and like I thought (after going through their site www.tigc.org ) it is aimed mainly at the medical community as in educating them as to what is DVT/PE how to recognise it and how to threat it... Everything we, as patients always hoped SOMEBODY was doing. For patients I think there is more information on this site and there is some info that links you to their site.

Here is what they have on their site...
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The Thrombosis Interest Group of Canada consists of a group of 50 Canadian health professionals in fields related to thrombosis who collaborate to write evidence-based or consensus-based clinical guides on the investigation, management, and diagnosis of thrombotic disorders.

The TIGC has developed and made available on it's web site:

*

26 clinical guides for adult primary health care professionals
*

3 clinical guides for pediatric primary health care professionals
*

3 guides for patients
* KidClot guides

In addition a yearly research fellowship was initiated since 1993 with ongoing unrestricted funding from Sanofi-Aventis, Canada and Bristol-Myers Squibb, Canada.

Debbie, here is a similar question to your's...
Why don't Dr recognise the side effects that accompany warfarin or coumadin, we (the patients) are well accustom to them, but are told, no it's not on the list of side effects...

After having spent some times on numerous DVT/PE sites and talking with many people who live with DVT/PE, it seems that DVT/PE as we know it, is something that the medical community is just getting re-acquainted with. Before, it was totally unheard of a 26 y/o, healthy person with either DVT or PE or DVT/PE. Then to be administered warfarin and tell their doctor that they felt what we call brain fog or being forgetful, constantly tired or even thinning of hair, heck that is what happens to older people regardless that they take warfarin or not. So those side effects are not yet recognised by the medical community, YET, but give it a few years...

Why is it that you can only get DVT by flying low class?

Sitting behind a desk, behind a computer all day are just two of the reason we contract DVT and it's not frowned upon...

So your question does fit in that same category.

WHY???

So I went off coumadin for 7 days, did the clotting disorder bloodtests and then resumed the coumadin. But during this "exposed" time, I had some leg discomfort and foot pain - not unlike plantar fasciatus. I started back on coumadin on WedPM - so I've had 3 doses now. Yesterday the pain in the foot (same side as the previous DVT) was quite severe and went to clinic - I had to convince the doc that this was a genuine sign - she figured that since I was back on the coumadin that I was covered. But I pushed for the leg doppler - it was thorough and clear. But today I can hardly weight-bear - this is so dejavu of my serious DVT/PE 18 mos ago. Back then I described the feeling like I was walking on a rock/tennis ball. If I hadn't had the ultrasound done yesterday I'd be freaking - I will go monday to check my INR. What else should/could I do? Debbie. I'm beginning to think I likely have a genetic clotting disorder. I know my grandmother had phlebitis and my mom had very bad variscose leg veins.