 |
 |
 |
|
 |
|
 |
|
 |
|
 |
|
 |
Why Am I Doing This?
I found out I have Factor V Leiden in 1994 after having a stroke. I'd never heard of this coagulation disorder before and started researching it. I found that I'm a classic case of Factor V Leiden.
- In 1977 I had my first clot while on birth control pills, a superficial clot in my leg.
- In 1981 while pregnant I had pre-eclampsia
- I had a miscarriage in 1989
- I lost my gall bladder in 1992
- Stroke in 1994
- Two clots to my chest in 1995
- DVT from my thigh to my pelvis in 1995
- 1999 -TIA related to my stroke in 1994
- 2001- I found that I also have prothombin 20210a, another clotting disorder (The test for this was not available when I had my stroke). I also have abnormally high levels of homocysteine.
- 2004 - another superficial clot in my leg
The combination of three clotting disorders is why I have had so many problems. They cascade on one another and make a clotting event more prone to happen. I am on anti-coagulants for life so that I do not have another major clotting event.
All these complications are typical of Factor V Leiden
My first team of doctors put me on meds that my body couldn't tolerate and generally didn't listen to me when I would ask questions. After dismissing my first two neurologists and the first hematologist - It took me a year to build up my current team. I wouldn't want any one else with thrombophilia to have to go through the learning experiences I had to. That's why I created the email forum. The more information that is passed between us the better. Information is power!
Don't forget to ask as many questions as you need to. If your doctor doesn't seem interested - find another one.
About the webpage and mailing list
I started the webpage and email forum in 1998. The Web-depot was hosting my page along with hemophilia and a few other mailing lists. Michael Davon owned the Web-Depot and hosted the list. When he died, his friend Todd Finney took over his mailing lists and has been providing my email forum with free support. He's the magic behind all the emails and I am the author of the web page. I write my own HTML (so send any errors you see to me and I'll fix them).
When I first started the email forum I wondered if anyone would join. I told my husband that if no one signed up in two weeks, I'd take if off the server and forget about the whole idea. I'm very proud to say that the list has over 1200 people on it and the emails are shared all over the world.
The email forum and web page are provided by myself and Todd Finney as a patient-driven informational resource. The list and names on it will never be sold or shared. It is private and non-commercially linked. I do not advertise or take money from any company or advertise on it. If there is a phone number or company listed it is only because the particular company helped out some of us clotters.
About me
Before I was told I had FVL, I was a typical Silicon Valley worker. I worked too many hours, didn't think to much about my health (except for my yearly OB appt.), didn't spend enough time with my friends and family - but work was very cool. A year of physical and occupational therapy after my stroke changed how I percieved what was important. My doc called it "seeing the big picture". I have lived in the Santa Cruz area for more than 20 years. Seven years ago I moved to Humboldt but recently I've returned to the Bay Area.
