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Samuel Chaney
My name is Sam Chaney. I am 47 years old. I found out that I have FVL heterozygous 5 years ago when they found a clot in my right arm, in the vein that
I had had an IV in. I didn’t even know it was a clot until several weeks later. I went in for an ultrasound at the recommendation of my general
practitioner, because I was having what I thought was a rotator cuff tear. Now I have a feeling of fear every time somebody goes to poke a needle in
my vein.
My mother was diagnosed with FVL in 2000, and my sister and Grandmother have also been diagnosed with it.
Like a typical hard headed male, who thought he was unbreakable, I tried to stay off of the Coumadin therapy because I like too many sports activities
where I could be easily cut – bicycling, skiing, roller blading, motorcycling, etc.
My mother has been pushing me for years to follow-up with my therapy because she did not want me to experience the same problems she has had. My mother
has had 4 PEs, at least 6 DVTs in her legs, and two years ago had a heart attack which she is positive was related to a blood clot in her pulmonary artery.
After reading this forum, I asked my mom if she was tested for a hole in her heart, between the right and left chamber. Her doctors have not tested her,
but she is now going to ask for the test.
Two weeks ago, I survived a pulmonary embolism (PE) which resulted from a DVT in my right calf. I believe that the DVT resulted from having tightened my
ski boot too tight prior to getting on the ski lift. The lift stalled for about 20 minutes, and I was unable to reach my boot to adjust it. My foot was
asleep when I got off the lift. I readjusted my boot and did not think anything of it the rest of the day. Three days later I noticed a dull pain in my
right calf. I just thought that I had strained a muscle while skiing. A couple of days after that I had my PE incident, which almost killed me. The PE
affected both the left and right lungs, but mostly the right, doing a large amount of damage to tissue in the lower right portion of my lung. There had
also been a partial infarction of both sides (this is a blockage of the blood supply to the lungs) but fortunately, it cleared quickly, otherwise it would
have killed me.
Since I have several friends in the EMT and medical professions, I was told how lucky I am to still be walking this earth. A five day stay in the hospital,
followed by a week of bed rest have convinced me that I don’t care to take any more chances with my condition. So I am committed to taking the Warfarin
cure. I am in the process of getting my blood INR between 2.5 and 3.0. I am in the process of building my medical team. In addition to my hematologist,
and my general practitioner, I will be getting a vascular specialist to help me deal with the pain I have in my calf. I have found a hematologist who seems
to be open minded, and knowledgeable enough of this blood disorder, and I plan to let her take the lead in dealing with this disease.
I also plan to have my two children checked for this. It seems that in my family the clots begin occurring after age 35. My mom’s first clot was
when she was forty, my sister's was when she was 38, and my grandmother's was when she was 42. In their cases, Factor V Leiden had not been discovered
when they had their first clots, so doctors did not even have a clue. My first clot was when I was 43. It seems that the medical profession is just becoming
aware of this factor, because half of the time I tell a physician or a nurse that I have it, they look at me like I have 3 heads on my shoulders.
I am grateful for this website because it gives me information I need to ensure that I can be an advocate for my own health and well being. I plan on becoming
an advocate to spread more information about Factor V Leiden. My mom was told that this is a relatively rare condition. Reading the information on this
site, I was surprised to find that it affects 1 in 20 people. There is nothing rare about that at all! I have to wonder, how many people have died of pulmonary
embolisms as a result of this disease, and they were never even diagnosed. Information can save lives.
Samuel Chaney