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I was rushed into hospital 2 weeks ago and eventually diagnosed, after a CT scan, with DVT and a Saddle PE. The clot in the lungs was very large and there is also one in the calf. This has been attributed to a few long haul flights in recent months. I had a heart echo scan and was told my heart was enlarged due to the strain it has been under. Was given injections of Tinzaparin whilst in hospital and started on Warfarin. Due to the pressure on beds I was not on the ward I should have been on and doctors had to travel from the other end of the large teaching hospital to see me each day. I never saw the same person twice and was given much conflicting information, was given an incorrect dose of warfarin once and a blood test was 'lost' once. My INR was, and still is, all over the place and I was told that I am very sensitive to Warfarin. I was sent home after a week with daily visits required to the Acute Medical Assessment Unit for blood testing. I am expecting to be referred to the hospital Warfarin clinic this coming week. I have been told that another heart echo scan will be arranged for approx 6 weeks time when I will also 'see someone'. I understand that I will be on Warfarin for at least 6 months and possible for life. My case will be reviewed in 6 months time. In the meantime I find myself very confused as to what I should be experiencing now and what risks I may still be subject to, (I was told at one stage that I was in imminent danger of cardiac arrest or respiratory failure). I feel fine when at rest but struggle with breathlessness and pain in the leg, (from the blood clot?), when walking. Getting to and from the hospital is proving very difficult as I am travelling on my own on public transport. To be honest I feel really scared! I have no idea who I can discuss my fears with and am not in contact with anyone medical who can answer the many question that keep jumping into my mind. For instance, would wearing a compression stocking help with the leg problem? Am I still at risk of sudden collapse. What happens to the clots, could the remaining one in my leg still travel to the lung? Will I ever get back to full fitness? Will I ever be able to fly long distance again or will it be too risky? I just wish there was someone, either medical or with personal experience that I could discuss all this with. Anyone else in a similar position?
Thanks for reading, even just writing this down has helped a little!!
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