Terry

In 2000 I was working very long days spending a lot of time on stool scanning items for inventory. I just found out I had fibro and the Dr. I had was giving me steroids to help with my joint pain. I began having trouble walking or standing. My Dr. put me on bed rest for a week, I returned to work for 3 days and back off again.

On our inventory day I was standing with my leg just throbbing in pain. My boss noticed that my foot was swollen over my shoe and sent me home. After 6 weeks of fighting this pain I another Dr. who immediately sent me for a Doppler. The DVT was huge and I spent the next 16 weeks trying to get it under control.

I was sent to a rheumatologist to help with the firo. She tested me for Lupus and it was then that something was not right. It took 2 years and a car accident to finally learn what I had.

I was sent to a hematologist to get the exact diagnosis . When all the tests were in I found I had a whammy going on. Not only did I have Leiden Factor 5 but hemocromotois, pernicious enema, fibro and severe arthritis in my joints.

I had surgery to repair my rotators cuff cause in the car accident. My children were all tested, along with my sister. None of them tested positive for Leiden. That was 10 years ago.

I am still on coumadin and will be the rest of my life. I have a niece who suffered 6 miscarriages before giving birth to 2 healthy kids. My granddaughter was having some major issues with her periods and my daughter took her to the family gyn. She was placed on birth control, had blood work done and returned home. Then a few days later the gyn called and told us to remove the pills asap and get her to a children's gyn Dr.

It was then we learned that she had a form of Leiden and could not keep folic acid in her body. That opened another can of worms. We now know that not only did I get this from my Mom, who died in 1997 from this, but my father is a carrier.

A few weeks later my niece broke her wrist, developed a clot and was found to have another form of Leiden. The Dr. also linked her miscarriages to this monster as I call It. My daughter and sister are both carriers but do not have the illness themselves. I am having a hard time keeping my INR under control. I now have a home tester, which is a blessing. I was having blood work every 24 hrs. I've had 11 units of plasma, 10 of them before my gallbladder could be removed. I've had 2 severe reactions to V-K shots and can no longer have them.

Leiden is a monster to me. When the INR gets high, I can't function or when its to low I'm not able to function. I take B-12 injections every 7-10 days to give me a bit of energy to keep going. God has watched over me with this issue. It explains a lot of strange medical issues I have had over the years, and I am lucky to be alive and able to write this email. I am now 52 yrs old. I try not to dewell on this but there are days I cant help but to worry about it.

The Dr. I have now is great about telling me what is going on. He reads anything new he finds and helped me to get my home tester and its made my life easier. The home tester is a wonderful item for me. Not being able to control the INR really gets me in the dumps but now I find them more and more and able to change the dose quickly. Living with this at times takes over and I tend not to be very outgoing for fear I can throw another clot. It's great to find your site and see I am not alone. I want to live to be 100 + to see my great great grand kids get married. Only God knows if I will make it, but I'm doing my best to make it come true. Thanks for letting me tell my story

Terry in WV

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