Hi all. I received a metallic aortic valve in December 2016 as I had aortic regurgitation and an aortic aneurysm. I was placed on warfarin but could never be stabilised on this, with my INR ranging from 1.1 to greater than 8 at any given time. I was referred to haematology - who said it was down to cardiology to sort - then back to cardiology who said it should be haematology! My GP finally decided in July this year that I was too much of a risk “an unstable liability”, took me off warfarin, put me on daily 100ml clexane and referred me back to cardiology. I have been injecting daily since, with no checks from GP or any word from cardiology. Last Thursday I had elective surgery to remove 7 back teeth. As instructed I stopped the clexane the day before surgery. Prior to surgery it was suggested that post op I would be given 20ml clexane as they had to ensure my valve was covered. I had the surgery, all went well. About 4 hours post surgery one of the doctors was consulted about my clexane injection and decided it’d be fine to give my normal dose of 100ml, which the nurse gave me. About half an hour later the bleeding started - blood was pouring from my mouth uncontrollably. They gave me a suction tube and just watched and waited. After what seemed an age they gave me two tabkets (can’t remember the name) and said they’d take half an hour to work. They didn’t work. I was then taken back to theatre where they worked for two hours to stop the bleeding - cleaning, repacking, restitching, then slowly woke me up over an hour to prevent blood pressure increase starting another bleed. Following this I stayed in hospital for a further 3 days whilst they gave me morphine, painkillers and antibiotics via a drip. They discussed anticoagulation - they were going to give me heparin infusions but decided to continue with my usual daily dose of clexane. I’m home now, in intense, incessant pain and wondering what to make of it all. Was sent home with Zopiclone sleeping tablets which knock me out and I can’t wait to take them to be free of pain. Rang GP surgery this morning to ask for a couple more of them to get me over the next few days (I have 2 left from hospital supply) to be told by a very officious doctor that I cant have any more because they won’t kill my pain and they are addictive so, no, I can’t have any! I’ve never known pain like this.
Am I wrong in thinking a mistake was made with my anticoagulation? Nobody seems to want to take responsibility for me. I was absolutely petrified - I’ve never seen so much blood! I know that sounds like a random bunch if sentences, but I don’t know if I should be asking questions? What do you think?
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Debs_22
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Poor you; you have been through the mill. I don't think you can do more than just pester your GP about it; if you are still technically under a haematologist, go back to them, too.
That sounds like a scary trip. Start doing a ton of research online. This sounds quite bizarre re- your doctors.
I'm afraid I don't have much faith in most doctors. Although I need to take
warfarin, I otherwise try to remain healthy and keep my immune system strong and avoid even the common cold. Warfarin blocks vitamin K, but I was lucky some years ago to discover a site online by a specialist in Leiden Factor 5, and he
puts his patients on vitamin K supplements, taken 12 hours after warfarin. I've been taking his advice for 4 years, without any problems. My warfarin dose is generally 4 mg. one day and 3 1/2 on alternate days.
I had a reversal of an ileostomy three years ago whilst on dabigatron. Surgery went okay, very painful but not unexpected. I had stopped anticoagulant day before surgery but was given heparin until I started it again three days later. Recital bleeding began on second day and it was endless. I had to keep bed pans to measure fluid loss but as it was mixed with faeces this was impossible. However it did stop after a few days and I had a transfusion and regular blood tests but I was in a month. Think it’s about balancing risk with benefit but I’ve never seen a haematologist either but GP is good as was surgeon. I really hope you get this pain sorted. Zopiclone isn’t for pain relief, Don’t get hooked but please insist on better pain relief, you have to wear them down!
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