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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. over 5 years ago
First of all let me say thankyou for creating this wonderful site
My name is Vannessa I live in Australia I also have factor V leidon and Im a warfarin lifer.
I will tell you a bit of my story,
When I was around 19 25 years ago I had a car accident and sustained 2 broken legs and a broken arm so was laying around in hospital for around 4-5 weeks of an 8 week stay. I started to develop pain in my right groin and told my mum because she had a history of clots in the past. My mum informed the Dr at the time who informed her I was just a complainer because I was in so much pain all the time, my mum nagged the Dr for two days and still he didn't listen until the third day when I had severe pain in my chest and could barely breath then it was all action because I had a pain in my groin which had developed into a pulmonary embolism I was so scared and so began my first 6 month journey on warfarin.
Life went on I got better was taken off the warfarin and I got married and had three beautiful boys my three pregnancies were textbook until a week after the birth of my third son I noticed the tell tale signs of redness, swelling and heat behind my right calf so off to the Dr I went who told me it was superficial and nothing to worry about I went back to that Dr everyday who even with my history and symptoms did nothing to act on it, by the time I ended up at the hospital my leg was 33cm bigger than the other one again I was scared again they told me not to move as I could dislodge it again I was on heparin via the drip and warfarin thus beginning my life taking warfarin. They did blood tests and found I have factor v and then told I had to stay on warfarin for life I was devastated no more children I always wanted a girl. When my third son was four I had a surprise I was pregnant OMG I was so scared the DR told me I had to abort I refused and instead injected clexane twice a day my pregnancy went well and I had a beautiful daughter who is now 13 (how time flies). My warfarin dose is usually between 10 and 12 mgs of marevan my INR fluctuates between 1.8 and 3.2 but normally is in the 2's somewhere.
I am currently working in community nursing the pace is better for me as the hospital is full on.
The highest my INR has been is 5.7 and like you I was so worried and also like you they just told me to withhold warfarin. I can't remember what my lowest reading ever was.
I do get slack and don't test on time so this website is absolutely brilliant for me and I can keep track of other medical conditions I have developed again I say thankyou.
And I apologise for my longwinded story.
Have a wonderful day
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