Peoples experiences/stories of self-testing needed for the AntiCoagulation Self-Monitoring Campaign (ACSMA) website

Hi everyone we need your help.

The ACSMA website is up and running but we need peoples stories of self-testing to put on the site. They can be totally anonymous or with just your christian name or you can tell your story and share it with the media, it will be up to you.

Please think about helping us, we are receiving tremendous support and are meeting with Ministers, MPs and Clinicians all the time, but we desperately need people to tell their stories to bring the campaign to life.

Email your story to anticoagulation@ntlworld.com or post on this site.

From antiCoagulation Europe - Thank you in advance for your help.

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  • Warfarin

    Feel free to use this experience of self testing for the ACSMA website. I am happy for my identity to be know if you think it will help.

    “One Persons Experience of Self Management”

    Me

    I should first explain that I am not a medical professional but, like many readers, simply a patient. I am a 66 year old engineer and industrialist and 14 years ago I had a defective aortic heart valve surgically replaced with a prosthetic implant. The problem with my own aortic valve had been known about and monitored for 20 years and my mother had spent 25 years with prosthetic Aortic and Mitral valves so in 1998 when it came to time for surgery it was no surprise and held little fear. I lived a busy and active life, loved country walking, mountain trekking and travel and also travelled extensively and globally for my work.

    After surgery of course I began to take Warfarin anti-coagulant to prevent blood clots forming on the valve surface and I settled on 8-9 Mg per day to achieve an INR between 3.5 and 4.5.

    It took some 6/8 weeks to settle on a regular dosage and then I began my regular monthly trips to my local anti-coagulation clinic for a venous blood test, long wait, dosage determination and a lost 4 or 5 hours with travelling to and from hospital, horrendous parking problems, waiting in line for my turn etc. I always came away with dosage instructions but no knowledge of what my INR was let alone what it meant or what else affected it. No explanations and no lifestyle advice except stay off alcohol!

    It was all very unsatisfactory and frustrating. Long trips abroad were very difficult to plan, my natural, medical curiosity was left frustrated, my working life was interrupted each month with hospital trips and the variability of my dosage levels a complete mystery.

    Help & Support

    At one post operative visit to my surgeon he sensed my frustration with the new limits placed on my lifestyle and he already knew me to be a strongly independent character who resented the changes. I wanted my life to carry on just as it was before without all these new constraints so he introduced me to the idea of self monitoring and self management of my INR and offered to support me in my discussions with my GP who was now responsible for my medical care.

    To say that my local medical professionals were inconsistent in their attitude to self management would be a great understatement.

    •My surgeon was very enthusiastic to encourage me towards self management

    •My local PCT was ambivalent but at least approved the provision of test strips on prescription.

    •My GP was highly suspicious of this unfamiliar approach and initially refused to support me and only when bullied and after representations by my surgeon (friend) did he reluctantly agree to allow this change and then only after 9 months of parallel testing by me and the Anti-coag. Clinic to determine consistency and competence on my part.

    •Having reluctantly agreed, allegedly out of concern for my wellbeing, he did not once in the over 10 years that I had been on a repeat prescription asked me to see him to review progress or check the need for my prescription or the amount of Warfarin that I request. On the rare occasion when other medication has been required it was necessary for me to remind him about checking for contra-indications with Warfarin. These to be fair are very busy individuals and the system rather than the GPs may be more to blame!

    •My local anticoagulation clinic remained still positively hostile. When I have sought advice from them about dietary factors affecting INR or asked them once if they would do a confirmatory test when I got a rogue reading they literally actually refused to even speak to me once they learned that I was no longer attending for regular blood tests but was self managing. They object to being “out of control” I think.

    In consequence, although I was determined or obstinate enough to persevere, when it came to decisions about dose levels in relation to INR test results, or questions about the effects of diet and lifestyle on INR, the long term results of Warfarin and possible side effects I found myself to be initially almost totally alone.

    Fortunately I found friends who have a much more helpful and supportive attitude.

    •Firstly the manufacturer of my first INR testing machine and although no training was provided then (unlike now) they gave me endless data and papers about INR, anticoagulation medication, lifestyle and dietary features which affect it etc. They later gave me an upgrade to a more modern design, free of charge, which I used for a few years before I bought my current latest model which is simplicity itself. That manufacturer were always there for advice when I needed them.

    •Next I discovered AntoCoagulation Europe and their periodical INReview and encountered Eve & Michael Knight with their dedication to providing support for people like me. The articles, letters, information booklets, commercial advertisements and networking opportunities in INReview fed my curiosity, educated me, provided shoulders to cry on and advice whenever needed. In time it became an easy decision to become a local area contact for ACE which in turn has brought me into sometimes regular contact with dozens of other patients most of whom just need a reassuring friend for encouragement

    •Their annual conference is also a great source of contacts, networking, latest information and what are the latest, favourite food and drinks to become the enemy.

    •The Internet is a good source of information too

    Lifestyle Differences

    For the last 14 years, since I started self managing, I have carried on travelling, not only in Europe but also to Asia, North America, the Far East both for pleasure and on business and simply taken my portable test machine, a few test strips and my Warfarin supply and simply got on with it. I must admit to a certain “smug” feeling on long haul air flights knowing that despite my age I am probably the person on the flight who is least likely to get DVTs

    There have been no interruptions to my work life to fit in with appointments at anti-coag. clinics and self management has had a totally liberating effect on my life.

    Apart from these practical aspects, self management has led me to understand far more about my condition and anticoagulation therapy than would ever have happened within the system and my control of what I can eat or drink and its likely effects on me and the remedies are so much better informed now.

    One thing I learned is that the effects of Warfarin dosage on ones INR is a very personal thing and what may take me 8 or 9 mg per day to achieve may take someone else 10 to 11 mg or another 3 to 4 mg per day. I am certainly convinced that I am now in a much better position to decide what my Warfarin dosage should be than my GP or Anti-coag. clinic could ever be, or I suspect some of the dosage determination computer software packages now available.

    I have also found that whilst some patients have a very stable INR and their test results hardly vary, others, like me, have quite varied results, perhaps due to a more varied diet or lifestyle and in such cases tweaking the Warfarin dosage may be better done more frequently. In my case I test my INR normally every week and adjust dosage if necessary to stay within therapeutic range. I am certain that a test on the more normal monthly basis provided at my anti-coag. clinic is simply not sufficiently frequent but a compromise has to be struck between the clinically ideal frequency, the inconvenience of hospital visits and the hospital’s resources. The consequence of self testing with greater frequency must therefore result in a greater proportion of the time within therapeutic range. In my case, my records of the last 8 years suggest that I am in the set therapeutic range for well over 90% of the time, much better I think as a result of self management.

    To be fair it must be said that Self Management is not for everyone. For some people the regular visit to the hospital or GP clinic for testing is a valuable social experience to meet kindred spirits and chat and for others the sense of security resulting from tangible medical oversight is important. In the case of my very non-technical, 80+year old mother the idea of her being set loose to test her own INR and then decide on her Warfarin dosage was positively terrifying. But for those who still have active lives to lead, who are reasonably competent and value their liberty rather than being trapped in “the system” self management can be a great blessing. After all, many folk with diabetes have to self test on a daily basis and then determine and implement their daily insulin dosage and they learn to manage well.

    I would like to end with a brief personal experience to encourage those who may be newly on anticoagulation therapy. A very few years ago I was following my hobby of denial of my age and the advancing years by trekking again for a few weeks in the Himalayas in Nepal. I had been up around 15,000 to 16,000 feet for about 3 weeks and was in the area of Everest Base camp when two things happened almost simultaneously. Due to the extended overexertion at high altitude and thin atmosphere my heart decided to take a rest and went into Atrial Fibrillation, the first and only time it had ever happened to me and I was floored and completely incapable of moving more than a couple of steps at a time. The second thing that happened was that a violent and sustained snow storm descended and it was impossible to get a signal on a Satellite telephone I managed to borrow. I couldn’t travel the several days trek to the nearest village for help nor contact the outside world for help so was stranded in a small hut on the side of Everest. It was 5 days before the storm lifted and I could get a signal to contact Kathmandu, via my wife at home, to get a helicopter to rescue me, 5 days with my heart weakening, increasing breathlessness and my circulation getting gradually more sluggish. I quite possibly owe my life to the simple fact that I was taking Warfarin and could carry out almost a daily test to keep my INR at the top of my range and minimise the effects of the AF until I was finally delivered to a hospital in Kathmandu. Being on Warfarin is not all bad news but, in my opinion, it helps to be in control of it rather than it be in control of you.

  • That is an amazing story and you have my total respect. It contains all the elements that I share with you (except that I just walk up Lakes Fells every now and then) I am 66 years old this year and was put on Warfarin as a precaution when I had AF just after my vasectomy on general anaesthetic in 1982!.I was born with a bicuspid aorta that was replaced in 1992 by a prosthesis, followed by a second aortic valve and rising aorta due to aneurysm in 2011. I am sad that many parts of the general medical view self monitoring and management in an archaic manner, like you I lost days and weeks of work time sitting around waiting for blood tests, in fact in one case they forgot about me and went for lunch!

    I have been self testing for ten years and bought my machine in South Africa when there were 15 rand to the pound, as that was the best deal in those days. It has been on cruises and holidays and into hospital for my 2011 operation. I told my GP I was buying one and she may have been ahead of her time, as was the local PCT, as she seemed to understand some of my issues (the straw that broke my camel's back was when I was ordered remotely through the yellow book to take 16mg a day, when my stable dosage is 5 to 6mg). My 2011 surgeon was delighted that I was self testing and only allowed me home after a week on the understanding that I would text him my daily readings as I returned to a stable level.My GP and practice do not monitor me in any way.

    My INR is stable with no side effects, e.g. bruising, as in the old days, I test at least once a week, more often when I have had a drink (generally 24 to 48 hours after).

    I wish that the surgeons would lead the rest of the medical profession into understanding the benefits of self testing and management. .

  • HI, What a reassuring story....Gives me hope and I am all excited about self testing my INR.

    I live in Cape Town and looking where one could purchase a test unit to check my INR on a regular basis.

    As you mentioned, visiting a pathlab is a harrowing experience and time consuming and NO interaction...."here are your results.....Do not ask questions....."

    I am 67 years old with pulmonary blood clots as the problem..... I would like to be able to monitor my INR and therefore am trying to find a supplier of both the test unit and the strips. The strips seem to also have a short life span and your advice and information will be greatly appreciated.

    THX for a GREAT article....it was SO worth reading it.

    JJ

  • I am a 56 year old with AF (as well as other problems) I have been on anticoagulation for almost a year but am told I will have to use it for the rest of my life. I was travelling up to Harefield Hospital for my blood tests and support as that is where I see my cardiac consultant. The anticoagulation nurse specialist informed me of self testing and enabled and encouraged me to find the most up to date information about test machines.

    I purchase a Coagichek XS machine and after a couple of sessions of duel vein and Coagichek test I now test at home on dates advised by my nurse...I call her with the results and she sets my dosage. I fill in my yellow record book and receive a letter a day or so later suggesting next test date.

    It all works like clockwork and I love the freedom self testing has allowed me, but more than that I appreciate what a super nurse my anticoagulation nurse specialist is,

    Thank you Gillian!

  • HI, I have tried to find Coagichek XS unit but it seems not available in South Africa. The supplier does not list South Africa as a sales point and I will appreciate your assistance as I am trying to find a supplier of an INR test unit as well as regular supply of the test strips.

    Regards

    JJN

  • Hi JJN,

    roche.com is the company site where I purchased mine. Good luck in your search if they do internet sales so you might be lucky. TK11

  • I presume your anti coagulant drugs are "Stain" groups,+ clopidagrel+ asprin. If you use any thing more than this, please keep me informed.

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