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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

Not sure if I'm in the right place but here's my story, all started in March of 2011 when my father died in hospital the day after his birthday, I was devastated, I was very close to him I was 40 at the time and the youngest of 3, I spent the next year in bed literally, couldn't go out, had a 6 year old son who I couldn't even take to school or play with, I was literally getting up to go to toilet and back to bed... I ate very little but when I did it was in bed, watched tv in bed everything... I was in a really bad place mentally.. Then in March 2012 I noticed a swelling in my right ankle which I just put down to being lying down constantly so just brushed it off, it went down eventually and after a week started getting sharp pains in left shoulder blade, I couldn't lie on that side or the other side and felt as if there was something 'stuck' behind the shoulder blade, very painful then the other blade started to ache but not as much pain. I decided to start moving around a bit thinking that my body was locking up after being in bed for such a long time, but I was getting out of breath just going upstairs (I have also had anxiety since age 25) so I thought the racing heartbeats and skipped beats I was getting was due to anxiety. 30th April 2012 I went upstairs and got as far as the landing when I thought my heart had stopped for a minute or so and then jumped in my chest and started again, never felt so scared, my partner called an ambulance and by the time they arrived I was gasping for air and my heart was beating so fast I thought it would fall out! They put the thing on my thumb for oxygen levels which showed 90 so gave me an oxygen mask which helped eventually, I was put in the ambulance and taken to a & e where they sent me for an X-ray, results came back as numerous blood clots on both lungs... Cutting it short I was in hospital for 9 days put on warfarin and told that the clots were more of the 'worrisome' type and I would be on warfarin for life! So here I am 4 years later aged 46 and stuck on warfarin I've asked doctor many times if I can come off warfarin but they say NO.. My INR sheet says reason: unspecified and although I've told them that I was in bed for almost a year and about the ankle swelling they don't seem to think that was the cause... No other family member has had clots of any type and I don't understand why I'm still on warfarin or what reason caused the clots.... Touch wood I've not had an episode since although I've had numerous aches and pains and was convinced I had another but they said no, on one hand I understand that being on warfarin is stopping this from occurring again and if I was taken off warfarin now I would worry about a recurrence but I can't keep my inr stable, I don't drink (because of warfarin and only drank little before) but I do smoke around 30 a day (my only downfall, but my only joy in life), I'm overweight and feeling really low at the moment thanks for reading X Gaynor

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