I recently encountered a new, unexpected and worrying reason why patients on anticoagulants should self manage their medication if possible.
Having been on warfarin for 15 years due to a mechanical, aortic heart valve I took control of managing my medication and INR monitoring 13 years ago. I recently had to have surgery for a minor orthopaedic problem so had to stop taking warfarin for a period whilst surgery was carried out. I was admitted to hospital for a few days only but discovered that the staff in the orthopaedic theater and ward were great at orthopaedics but they seemed clueless about anticoagulation.
Firstly the pre-op procedures led to instructions to stop the warfarin too late so at the last day before surgery I had to have Vitamin K injections to get my INR down. I was then at an INR of below 1.5 for 5 days with no cover of clexane (Heparin) injections because they were too anxious about getting my INR down and didn't understand the importance of the anticoagulation therapy in the first place. They then would have discharged me without any Heparin but instructions to start taking warfarin again after 2 days and in small doses at first which would have left me out of therapeutic range for a further week at least.
My appeals for a safer "bridging" arrangement and Heparin in the meantime simply caused blank looks, confusion and contradictions until I told them that I had already started taking warfarin again on my own initiative, from my own supply, 8 hours after surgery and was taking an adequate dosage to get me back to therapeutic range more quickly. In alarm they sent for a consultant who completely endorsed my actions and berated the Orthopaedic staff for not dealing with my lifelong need for anticoagulation nor understanding its importance. I was quickly given a large supply of Heparin for self injection and discharged. One of the staff did tell me that their instructions were based on the anticoagulation need for a non-mechanical mitral valve implant as their records were incorrect!
It was only because of my years of self management experience and the resulting understanding of anticoagulation therapy that I was able to discern their errors in treatment, take steps to correct it and avoid a possibly life threatening situation but I was left deeply concerned for those thousands of anticoagulant patients who enter hospital for surgery and do not have their anticoagulant therapy correctly managed and simply trust the medics!
Hi PBirt - I am so sorry on what you went through as exactly same thing happened to me, but luckily like yourself I self-dosed to save my life. Due to my GP not really understanding my case - my INR yo's yo's from extreme highs to zero and I need tests every couple of days and the NHS budgets don't stretch. I bought my own machine and keep my own INR records which although they look at they won't alter INR Star programme to reflect my findings. Due to waiting a week and running out of strips partly due to their cost, getting some kind of virus my INR rose to 20. I was rushed into hospital and given Vitamin K injection. Being a Friday, there are hardly any doctors attending over the weekend and finding one who understood anticoagulation was impossible. They wouldn't give me warfarin for the first day and I complained and reluctantly gave me 2 mg at midnight. I asked for Clexane (LMWH injections) - I have used Lovenox (USA, not available here) and quite capable of injecting myself. No the doctors didn't agree and I told them that they were putting my life at risk with such a low dose of Warfarin and no Clexane. The next day the same and I thought of discharging myself or getting a friend to get my warfarin from home and bring it in. They reluctantly gave me 5 mg. Then I finally got a doctor who understood and said I was totally right and apologised - just like yourself. I was discharged and thank goodness as was put in a dementia ward and thought I'd join them if I wasn't let out due to the worry of my situation. The whole thing was a nightmare. I then saw my GP the next day and he was really cautious, but now I had my own warfarin and after 3 weeks (plus getting Clexane for 20 days to compensate) finally my INR returned to target of 3.5. If I had not known what I was doing I do not know what may have happened due to my life being at risk. I was diagnosed with multple PEs in August and put on warfarin from then. In some ways your situation made me realise that I was not alone in this and ir has helped. My GP still doesn't believe in self-dosing when the INR is unstable but I doubt if mine ever will be without self-dosing and even then they think I have a very high resistance to it hence the extremes in INR and may be eligible for new drug alternatives.
Worryingly these stories are not that uncommon and ACE hears from many people who have not been given correct bridging therapy. It does not have to be for surgery as some diagnostic tests (eg. colonoscopy) require you to come off of warfarin.
It seems that junior doctors and nurses do not have much if any training on anticoagulation and everyone is worried about possible bleeding but does not see the possibility of clots as the same high threat.
As Peter says it is frightening to think that patients who do not have the knowledge and cannot speak up for themselves will be put at high risk.
Sorry to add another story on the same theme.My INR dropped suddenly to 1.7 of course on a Saturday morning ,when the anti coagulation clinics are closed.(I live in central London so there are a few,but all closed)after many phone calls eventually went to A and E and later took up self monitoring.
It happened again as shown on the monitor also on a Saturday and tried to contact a duty doctor at St Georges hospital ,where the clinic is...very difficult.Ended up by saying I had some heparin injections, in date and knew the dose from my last hospitalisation and I was going to take it. He reluctantly agreed.
There is a real resistance to self dosing and the use of heparin and ignorance about the effects of getting it wrong.You have to watch all the time .If you can get hold of some preloaded syringes of Heparin they are very easy to operate and are effective immediatey.
I've experienced the same thing when going for a prostrate biopsy. My Gp told me to stop taking my Warfarin for 5 days preceding the operation. I was unhappy with this so went a long to the specialist clinic and saw the sister. She immeditely said I should never stop the warfarin without the clexane injections to the stomach. She also told me that I should continue with the cleaxane injections and take 10mg warfarin per day and then finish the injections and tilltrate my dose to stay in therauputic range. I'm self managing and have been for 8 years. My experience is that very few GP's or other staff understand anticoagulant therapy other than the specialist trained staff.
Has happened 2 me NUMEROUS times, where they stop the warfarin too soon, which results in me having heated arguments with the person concerned when I explain that I will end up with a clot or too late, which results in me being sent home without having the surgery & having 2 go back the next day or so & having 2 arrange childcare etc all over again, the clexane & heparin bridge is another matter entirely, I won't even start ranting about that ;0)
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