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Commented on My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything. almost 2 years ago
My story is a little different from everyones...I am 11 in 500,000 people per my Hematologist and he has let me know he will follow me for life....I had Guillain Barre and Epstein Barr virus about 6 yrs ago . A 1 1/2 yrs ago I was out of town at a wedding and woke up at 4:00 am with horrible belly ache.....Went to the ER and they explained I had a spleen infarction and 3/4 of the spleen had died due to a clot, only they couldn't locate a clot. I then came home and Inititally the hematologist said I had Leukemia....Then the battery of tests ensued and everything came back negative. This took months. My heart was looked at inside and out. All of the blood tests came back negative as well. They did find I was in hypercoagulation state and that is all they can find....They believe the Guillian Barre had impacted my clotting time. My sister dies from PE 10 yrs ago. But she did have risk factors(bc pill, over weight). The heredity blood test came back negative as well. Since then the spleen did regenerate to 90 % and I am 5 mg Monday and Friday and 2.5 all other days with Warfarin...So they really don't know what happened to me so its sort of scary because now I don't know what to expect. I have never felt the same since this has occurred...I'm only 54 yrs old and physically I struggle a lot now.... :(
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