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Stoneage to Space Age:  Experiences of a Thrombophilia Patient

Deborah Okner Smith, Patient and Founder of http://www.fvleiden.org

September 1, 2009

People die from clotting events.  This was true in the “stone age”, before Factor V Leiden (FVL) and other clotting disorders were identified, and it is still true today. In the past, however, clotting was simply chalked up to complications in the hospital, complications in pregnancy, or simply being prone to episodes of phlebitis (like Richard Nixon).  No one really questioned the disorder or looked to identify an underlying cause.  I know in my own family that my aunt died giving birth to my cousin after experiencing a clot.  She probably had FVL, which was passed from my grandfather to both my father and aunt, and then from my father to me.  It was simply accepted that older folks had strokes and heart attacks.  It was just part of growing old.  My grandfather had several heart attacks before he died from one.  He may have had, and probably did have, heart disease, but given what we now know about my family history he may also have had FVL.  Perhaps in this day and age, he would have been put on Coumadin or Plavix and survived longer.  Perhaps also now my aunt would have been diagnosed and her clotting disorder managed during her pregnancy –an example of the differences between then vs. now.
 
There were no questions asked when I went to get my first prescription of birth control pills in the late 1970’s.  I was on them for 8 months before I got my first superficial clot; it came a ten-day stay at Stanford Hospital on “blood thinners.”  All the nurse said was that “Some folks clot, we don’t know why,” and “Stop crossing your legs.”  No booties were given to me; no compression hose; no leg warming apparatus – another comparison between then and now.
 
In 1994, the test for Factor V Leiden came out.  A simple blood test can now tell if you have the FVL gene, and if you are heterozygous or homozygous.  In late 1994, out of the blue, I had a hemorrhagic stroke.  While at Stanford, a complete blood panel was worked up to figure out why a 34 year old would have this type of stroke (I probably had an ateriovenous malformation [AVM] that burst; even discussions at Medical Grand Rounds could not prove or disprove the reason for my stroke).  I was told 50% of folks never wake up from the type of event I had.  It turned out that I am heterozygous for FVL.  Later, I would find out that I have other clotting disorders in the mix: I am also heterozygous for factor II and I have homocystienemia.
 
A year later, I landed back in the hospital again because of my clotting disorders.
Following minor surgery, I got a DVT from ankle to pelvis.  I was put in compression hose and leg warmers and was told I would be taking Coumadin for life.  If either event had happened in my aunt’s time, I would probably not be here.
 
When I got out of Stanford Hospital I asked myself “What does this mean? What is FVL?”  I had never heard of it prior to my stroke.  I certainly knew what hemophilia was.  My husband has hemophilia, a disorder that has been around forever, even appearing in history books.  I went to the Stanford medical library and could not find a single article on FVL. I searched the web in the absence of Google or other search engines – Yahoo had only recently started.  I found one medical article and it was a doctor’s study (in doctor speak), which was very difficult to comprehend, let alone after having had a stroke.  It made little sense to me.  From my husband, I knew that hemophilia support groups were available, so at my next checkup I asked what was available to me.  Nothing.  The only thing that existed was a stroke support group.  I thought, “Okay, I’ll try it.”  I tried one session, but everyone there was much older than I and had suffered a “regular stroke” associated with old age.  Their issues were much different than mine.  None of them had a clotting disorder (or at least none of them knew that they did).
 
I contacted the local hemophilia organization and asked if there were any resources for me.  Again nothing.  I said to my husband as we left Stanford after one of my many checkups, “I can’t be the only one with this.  Why isn’t there something for us clotters to read or meet or attend – similar to what the hemophilia group offers.”  It has symposiums and support groups, educational materials, children’s camps, and more.  After repeatedly searching on the Internet, I found a woman in Wisconsin that offered a bulletin board message board website.  It was difficult to follow the conversation threads, but at least there was someone out there just like me!  We kept in touch for a while but I lost interest because I did not feel it was an effective tool for people with clotting disorders.
 
I am a Silicon Valley worker, so I thought I would just make my own FVL web page and put it up on the web.  I also knew that my husband had participated for several years on an email-based discussion list for persons with hemophilia.  This site was heavily used to discuss pertinent issues within that community.  Thanks to my husband, I got in touch with the fellow who ran the hemophilia list.  He helped me create the www.FVLeiden.org website as well as an email discussion list.  I intended the website to serve as a vehicle for providing information while at the same time informing people about and enrolling them in the email list.  I told my husband that if after two weeks no one signed up for the discussion list I would take down.  The site and list serve caught on quickly and grew steadily.  With over 1,400 participants from all over the world, 2009 is the 10th anniversary of www.FVLeiden.org.  The topics discussed are exactly what individuals with clotting disorders want to discuss.  It is an open, un-moderated email forum; those of us who have been through whatever topic is being discussed lend our ideas and support.  I also continually expand the website with up-to-date information relevant to persons with clotting disorders.  At its inception, my site was just about the only thing on the Internet with such a compendium of information.  Today, of course, when a person is diagnosed with FVLeiden or another form of thrombophilia there are pages and pages of information from other web sources and in medical libraries.
 
Because of my work with www.FVLeiden.org, I was asked to participate in a clinical trial for one of the first home INR home testing meters.  My fellow study participants and I went to Stanford once a week to poke ourselves.  It was great to sit around the table with others who needed such a device.  I was the youngest person there; everyone else was elderly with had heart conditions (hence they were on Coumadin).  For our involvement in the trial, each of us was given a meter of our own at the end of the trial for participating.  This machine gave me the freedom not be tied to an anticoagulation lab.  I could test my INR at any time, any place.  It gave me the freedom to travel and move anywhere I wanted to live.  I consider it the biggest advance in thrombophilia thus far.
 
The home INR meters have improved since then.  I now own a different one, smaller and more compact.  I do not have to refrigerate the strips or calibrate the machine as I did with the predecessors I owned.  The same types of advancements have occurred with compression hose.  When I was first in the hospital, I was given what I would consider granny compression hose – ugly thick white stockings that took me a half hour to pull on or off.  A prescription was needed to purchase the stockings and I had to go to a medical supply store to purchase them.  Now there are multiple websites to purchase nice, fashionable stockings.  They come in a variety of colors, sizes, thicknesses and a prescription is not needed.  What a difference from 15 years ago when I was given my first stockings to take home!
 
Genetic testing has started to focus on thrombophilia as well.  When I was in my early twenties and got married the only testing available was for Tay-Sachs.  However thrombophilia testing was not available at that time.  Now there are websites advertising multiple genetic tests for thrombophilia.
 
The media has started to focus on DVT awareness too.  A few airlines show videos on long flights that show exercises to prevent passengers from being stationary for too long.  Articles are popping up in magazines about the risk of clots after long car trips or plane flights.  When I travel for more than 3 hours on a plane, I walk the length of the plane several times.  I used to get all kinds of looks while doing this, now people understand why someone will get out of their seat and move about the plane.  There has been mention of thrombophilia on network news and in doctor related TV shows (House and ER, for example).  They do not usually go into great detail, but at least there is mention of it to a large audience.
 
It seems to me that the last fifteen years there has been a time of huge advancement in awareness and treatment of thrombophilia.  When I was first diagnosed, I truly felt alone.  Now there are many thousands of people around the country and the world with whom to share information and experiences, and thanks to the Internet, this is happening every day.  I still feel that there is a void in terms of a national entity that truly speaks for people like me; but I am still hopeful that this will change and I am constantly looking for ways to help make it happen.  As The Grateful Dead said, “What a long, strange trip it’s been.”
People die from clotting events.  This was true in the “stone age”, before Factor V Leiden (FVL) and other clotting disorders were identified, and it is still true today. In the past, however, clotting was simply chalked up to complications in the hospital, complications in pregnancy, or simply being prone to episodes of phlebitis (like Richard Nixon).  No one really questioned the disorder or looked to identify an underlying cause.  I know in my own family that my aunt died giving birth to my cousin after experiencing a clot.  She probably had FVL, which was passed from my grandfather to both my father and aunt, and then from my father to me.  It was simply accepted that older folks had strokes and heart attacks.  It was just part of growing old.  My grandfather had several heart attacks before he died from one.  He may have had, and probably did have, heart disease, but given what we now know about my family history he may also have had FVL.  Perhaps in this day and age, he would have been put on Coumadin or Plavix and survived longer.  Perhaps also now my aunt would have been diagnosed and her clotting disorder managed during her pregnancy –an example of the differences between then vs. now.
 
There were no questions asked when I went to get my first prescription of birth control pills in the late 1970’s.  I was on them for 8 months before I got my first superficial clot; it came a ten-day stay at Stanford Hospital on “blood thinners.”  All the nurse said was that “Some folks clot, we don’t know why,” and “Stop crossing your legs.”  No booties were given to me; no compression hose; no leg warming apparatus – another comparison between then and now.
 
In 1994, the test for Factor V Leiden came out.  A simple blood test can now tell if you have the FVL gene, and if you are heterozygous or homozygous.  In late 1994, out of the blue, I had a hemorrhagic stroke.  While at Stanford, a complete blood panel was worked up to figure out why a 34 year old would have this type of stroke (I probably had an ateriovenous malformation [AVM] that burst; even discussions at Medical Grand Rounds could not prove or disprove the reason for my stroke).  I was told 50% of folks never wake up from the type of event I had.  It turned out that I am heterozygous for FVL.  Later, I would find out that I have other clotting disorders in the mix: I am also heterozygous for factor II and I have homocystienemia.
 
A year later, I landed back in the hospital again because of my clotting disorders.
Following minor surgery, I got a DVT from ankle to pelvis.  I was put in compression hose and leg warmers and was told I would be taking Coumadin for life.  If either event had happened in my aunt’s time, I would probably not be here.
 
When I got out of Stanford Hospital I asked myself “What does this mean? What is FVL?”  I had never heard of it prior to my stroke.  I certainly knew what hemophilia was.  My husband has hemophilia, a disorder that has been around forever, even appearing in history books.  I went to the Stanford medical library and could not find a single article on FVL. I searched the web in the absence of Google or other search engines – Yahoo had only recently started.  I found one medical article and it was a doctor’s study (in doctor speak), which was very difficult to comprehend, let alone after having had a stroke.  It made little sense to me.  From my husband, I knew that hemophilia support groups were available, so at my next checkup I asked what was available to me.  Nothing.  The only thing that existed was a stroke support group.  I thought, “Okay, I’ll try it.”  I tried one session, but everyone there was much older than I and had suffered a “regular stroke” associated with old age.  Their issues were much different than mine.  None of them had a clotting disorder (or at least none of them knew that they did).
 
I contacted the local hemophilia organization and asked if there were any resources for me.  Again nothing.  I said to my husband as we left Stanford after one of my many checkups, “I can’t be the only one with this.  Why isn’t there something for us clotters to read or meet or attend – similar to what the hemophilia group offers.”  It has symposiums and support groups, educational materials, children’s camps, and more.  After repeatedly searching on the Internet, I found a woman in Wisconsin that offered a bulletin board message board website.  It was difficult to follow the conversation threads, but at least there was someone out there just like me!  We kept in touch for a while but I lost interest because I did not feel it was an effective tool for people with clotting disorders.
 
I am a Silicon Valley worker, so I thought I would just make my own FVL web page and put it up on the web.  I also knew that my husband had participated for several years on an email-based discussion list for persons with hemophilia.  This site was heavily used to discuss pertinent issues within that community.  Thanks to my husband, I got in touch with the fellow who ran the hemophilia list.  He helped me create the www.FVLeiden.org website as well as an email discussion list.  I intended the website to serve as a vehicle for providing information while at the same time informing people about and enrolling them in the email list.  I told my husband that if after two weeks no one signed up for the discussion list I would take down.  The site and list serve caught on quickly and grew steadily.  With over 1,400 participants from all over the world, 2009 is the 10th anniversary of www.FVLeiden.org.  The topics discussed are exactly what individuals with clotting disorders want to discuss.  It is an open, un-moderated email forum; those of us who have been through whatever topic is being discussed lend our ideas and support.  I also continually expand the website with up-to-date information relevant to persons with clotting disorders.  At its inception, my site was just about the only thing on the Internet with such a compendium of information.  Today, of course, when a person is diagnosed with FVLeiden or another form of thrombophilia there are pages and pages of information from other web sources and in medical libraries.
 
Because of my work with www.FVLeiden.org, I was asked to participate in a clinical trial for one of the first home INR home testing meters.  My fellow study participants and I went to Stanford once a week to poke ourselves.  It was great to sit around the table with others who needed such a device.  I was the youngest person there; everyone else was elderly with had heart conditions (hence they were on Coumadin).  For our involvement in the trial, each of us was given a meter of our own at the end of the trial for participating.  This machine gave me the freedom not be tied to an anticoagulation lab.  I could test my INR at any time, any place.  It gave me the freedom to travel and move anywhere I wanted to live.  I consider it the biggest advance in thrombophilia thus far.
 
The home INR meters have improved since then.  I now own a different one, smaller and more compact.  I do not have to refrigerate the strips or calibrate the machine as I did with the predecessors I owned.  The same types of advancements have occurred with compression hose.  When I was first in the hospital, I was given what I would consider granny compression hose – ugly thick white stockings that took me a half hour to pull on or off.  A prescription was needed to purchase the stockings and I had to go to a medical supply store to purchase them.  Now there are multiple websites to purchase nice, fashionable stockings.  They come in a variety of colors, sizes, thicknesses and a prescription is not needed.  What a difference from 15 years ago when I was given my first stockings to take home!
 
Genetic testing has started to focus on thrombophilia as well.  When I was in my early twenties and got married the only testing available was for Tay-Sachs.  However thrombophilia testing was not available at that time.  Now there are websites advertising multiple genetic tests for thrombophilia.
 
The media has started to focus on DVT awareness too.  A few airlines show videos on long flights that show exercises to prevent passengers from being stationary for too long.  Articles are popping up in magazines about the risk of clots after long car trips or plane flights.  When I travel for more than 3 hours on a plane, I walk the length of the plane several times.  I used to get all kinds of looks while doing this, now people understand why someone will get out of their seat and move about the plane.  There has been mention of thrombophilia on network news and in doctor related TV shows (House and ER, for example).  They do not usually go into great detail, but at least there is mention of it to a large audience.
 
It seems to me that the last fifteen years there has been a time of huge advancement in awareness and treatment of thrombophilia.  When I was first diagnosed, I truly felt alone.  Now there are many thousands of people around the country and the world with whom to share information and experiences, and thanks to the Internet, this is happening every day.  I still feel that there is a void in terms of a national entity that truly speaks for people like me; but I am still hopeful that this will change and I am constantly looking for ways to help make it happen.  As The Grateful Dead said, “What a long, strange trip it’s been.”


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