People’s Stories

For those on long term warfarin, a portable INR tester for home use provides the means for many people to manage their warfarin medication from the comfort of their own home and gives them the option to test wherever it may be convenient. People can either self-test or self-manage their INR levels, commonly referred to as self-monitoring. People who are self-testing send their INR results they obtain from their portable tester to their healthcare professional at an agreed time who will then advise if warfarin dose adjustment is necessary. People who are self-managing adjust their warfarin dose themselves following training with their healthcare professional. Read how self-monitoring has changed the lives of people on long term warfarin.

Case Study: Hannah

Hannah Williams

Hannah was only 19 when she had a deep vein thrombosis (DVT) in her groin and one in each of her lungs. After treatment with warfarin and Clexane for about eight months, she was tested to find out why this had happened at such a young age.

The test results told Hannah that she had a condition called Factor II Leiden and this had been triggered by the contraceptive pill she had been taking. At this point her clinician decided not to put her onto warfarin for life. In 2008, Hannah experienced another DVT and it was then decided to put her on warfarin for life. Between 2008 and 2013, Hannah experienced quite a few pulmonary embolisms and each time her INR target level was raised to try and make it more stable. For Hannah this involved a lot of trips back and forth to the hospital to have her INR checked.

Frequent trips to the hospital caused major disruption to Hannah’s life, particularly as she had to juggle appointments around a full-time job. In 2010/11 Hannah decided to purchase her own machine so she could check her INR levels at home. The machine cost her £300, however she was able to get the test strips on prescription. Her clinic were not happy about her having these strips on prescription; however, Hannah convinced the clinic staff that it is extremely important that she is able to check her INR levels. Hannah emails her results to her GP once a month; a nurse will then contact her to see if her warfarin dosage needs adjusting. Hannah is also able to contact the nurse at anytime if she needs additional help.

For Hannah, being able to self-monitor has made her working life so much easier. However, the cost of the self-monitoring device was expensive for her and she is frustrated that she had to pay for the device. Hannah is in frequent contact with the NHS and hopes that the system will change soon and be fairer to patients like her.

Case Study: Kevin

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Kevin currently has his INR monitored most weeks at his doctor’s surgery. This regular visit to his GP interferes greatly with his working life. Kevin often has to take an hour to an hour and a half off work each time to take into account travelling to and from the surgery and then waiting to be seen. Kevin feels that the appointments available at his surgery are limiting for people who are in full time employment.

Visiting the surgery helps Kevin control his INR levels, however, he believes that being able to self-monitor would give him greater confidence and flexibility. Kevin’s GP surgery has been very helpful in monitoring his INR; however, it is not prepared to offer him self-monitoring, neither is his local hospital. Kevin finds this unacceptable, considering that other people around the country are offered the opportunity to self-monitor.

Kevin has used the ACSMA toolkit extensively and has written to his GP and local MP to raise the issue of why he cannot self-monitor. However, his GP surgery has told him they are not prepared to prescribe warfarin unless they monitor his INR. His local hospital has told him that they are unable to accept INR readings from anything but their own equipment due to legal issues.

Kevin is prepared to pay for the self-monitoring machine as long as he can get the testing strips on prescription, which is a problem for patients in some areas across the UK.

Case Study: Norman

Norman Manuel

Norman had his heart valve replaced in 1994, which involved hospital visits every one to two weeks, often having to wait up to two and a half hours at a time. All that changed in 2008 when Norman started self-monitoring his INR levels. This followed a joint decision by Norman, his clinic pharmacist and GP, who throughout the whole process provided fantastic support. The GP has willingly provided test strips, which not all GPs do. This was in contrast to the management at the local hospital, who did not support self-monitoring.

Since he began self-monitoring, Norman feels very much in control of his INR, as he has been in therapeutic range 90% of the time. Self-monitoring has given Norman greater knowledge, which has made him more aware of why there is a need for regular testing and the confidence to challenge medical staff when he thinks things are not quite right. Norman said: ”My 20 years’ experience of measuring my INR has shown me that too much time is spent on regulations and not enough on educating INR patients of opportunities and benefits from increased involvement and responsibility to share control”.

Case Study: Angela 

Angela Collins

 

Angela has an artificial heart valve and has been on warfarin for 26 years. For the last 10 years Angela has been able to self-monitor, which was a life changing experience. However, her journey wasn’t an easy one because many health professionals weren’t aware of self-monitoring, this is still the case, and it took a year for doctors to allow her to self-monitor.

Before self-monitoring Angela was having her INR checked once or twice a week as her INR level was fluctuating so much, which was always making her feel as though she must be ill. While being tested at hospital clinics the regular hospital trips were taking three to four hours, which was having a huge impact on the quality of her life and meant that she was frequently having to take time off work. As a consequence her work colleagues knew about her medical condition. Angela felt powerless as she couldn’t do anything to look after herself, and had to wait until the next day to get her INR results.

Self-monitoring has changed all this as Angela now has a sense of control and confidence, her INR level is more stable, and people she works with don’t know about her medical condition unless she chooses to tell them. Despite self-monitoring for the last 10 years there are still some challenges, particularly with prescription of test strips which is becoming a regular battle with Angela’s surgery due to pressure from her local clinical commissioning group.

Angela said: “Self-monitoring has provided me with a far brighter future as it has allowed me the freedom to do what I want, when I want, rather than having to base my life around hospital appointments”.

Case Study: Ray 

Ray Grover

Ray has an inherited deficiency in protein S, so his blood clots too quickly. In 2005, Ray developed deep vein thrombosis (DVT) which means that he is now on warfarin for life. A year after having the DVT Ray started to self-monitor. Ray was given good support by his haematologist and by his local anti-coagulation service. They helped him in his decision to buy the self-monitoring device and trained him to use it. Since self-monitoring Ray hasn’t looked back: no more regular hospital appointments. Ray now only goes to hospital every six months to make cross check with his INR reading and the hospitals. Ray found that the test is quick and easy, and does not interfere with his day to day life. Ray feels more in control of his condition, which allows him to make more informed decisions. Ray said: “Self-monitoring is so much more convenient as it saves a great deal of time and is easy to do. If I have a change in my diet or general health I can test my INR easily to see if I am still in range. It has given me so much more freedom, I can travel and go on holiday safe in the knowledge I have my self-monitoring device with me. When away, if I need to measure my INR level I can in a safe and convenient way”.

Case Study: Jean

When Jean’s INR used to be measured at her hospital she found it very inconvenient. Jean described the experience saying “I was not in control of my own body. Now that I self-test/manage successfully I feel that I have regained ownership of my body.” 

Jean attended the ACSMA regional meeting in Manchester earlier this year. Following the meeting she had a discussion with her GP and found out that she is the only patient in her GP practice who self-monitors! Jean strongly believes that more publicity is required, so that more patients have information about the potential to self-monitor. Jean said, “the new way of self-monitoring my INR levels was summed up by the words on a placard at the ACSMA regional meeting: self-monitoring is a passport to my freedom.”

Case Study: Kevin 

Kevin Daffey

 

Kevin had an aortic root replacement aged 38, following a diagnosis of a large ascending aneurysm in 2007. The operation included the insertion of a prosthetic aortic health valve, which meant that he would be on anticoagulation therapy for life.

After Kevin’s operation, his surgeon told him about the possibility of self-monitoring and how it would benefit a relatively young person to manage lifelong anticoagulation therapy. Kevin found the regular venous blood tests challenging, with his phlebotomist sometimes struggling to draw blood from his deep and collapsing veins. Kevin also had a low INR, which mean regular blood tests, more than once a week, which Kevin described as a logistical nightmare.

Kevin explained that his GP practice was not supportive of his choice to self-monitor and after discussions with his GP he looked into moving GP practice. Kevin discovered that changing GP practice is not a straightforward task and requires the cooperation of both the leaving and receiving GP practices to make it happen. Kevin’s current GP practice is fantastically supportive of self-monitoring.

In 2007, Kevin purchased a Roche CoaguChek XS system and has been self-monitoring since then. Kevin said, “Using a technology which involved a pin-prick and gave an instant result seemed much easier and even opened the door to self-management, which is where I am now. I feel that the £400 I personally invested in the CoaguChek XS machine was value for money and the support for the test strips on prescription by my GP must represent a big saving for them over venous testing, in addition to lower risk of me requiring acute medical interventions because of significant deviation from therapeutic range.”

Case Study: Rob – 52 years old 

Rob has been on warfarin for over 25 years since having a mechanical heart valve fitted in 1989. At the time, Rob lived in Sweden where INR tests were carried out by a simple finger prick and the result was obtained within a couple of minutes. When Rob returned to the UK, he was dismayed to find that it was standard practice was to take venous blood from the arm, send the sample off to a lab and wait a few days for the result. Rob felt that health care professionals responsible for managing the dose would often chase a moving target by overreacting to minor fluctuations in INR results, which would naturally lead to more frequent tests and unnecessary dose changes. Fortunately, Rob’s INR results have always been relatively stable having learnt to understand the effects of diet and lifestyle over the years. Rob then decided to research alternative ways to have his INR measured, which is when he came across self-monitoring. Nine years ago he purchased a Coaguchek meter. Rob was lucky as his GP was immediately supportive and agreed to prescribe test strips allowing him to self-monitor. Although no previous patients at Rob’s GPs’ surgery had self-monitored, his GP’s helpful and sensible attitude were essential to allow Rob to self-monitor. Rob’s GP trusted him to make decisions about dose changes as he felt patients know their own bodies best. However, this wasn’t always the case. Despite Rob’s long experience with warfarin it took him a long time to convince others that a dose change was not always necessary. In 2009, Rob again had open heart surgery which dealt with an aortic aneurysm and had a pacemaker fitted, which means that Rob occasionally has to visit hospital for more minor heart related procedures. On these occasions, it is a huge advantage to be able to do his own INR checks prior to the procedure and it has also allowed him to check the calibration of his own machine with the hospital’s own venous checks. Rob said: “Self-monitoring has given me freedom and has undeniably saved the NHS both time and money”.

Case Study: Katherine – 18 years oldKatherine

Katherine from Surrey was born with a heart condition called Pulmonary Atresia. She had to have major life-threatening open heart surgery when she was 7 years old and has been battling her condition ever since. Rachel, Katherine’s mum said, “Taking her for the blood tests over the years has been pretty harrowing, there is no reasoning with a terrified, crying child who is begging you not to have it done. Having it done at home is so much easier; we’re so lucky to now have a machine. It’s safe, easy and practical – it revolutionises your whole life”. Katherine who has just finished her exams said, “I’m so grateful we had a machine to monitor my INR at home. During GCSE’s we didn’t have the disruption of having to go to the hospital for every check – exams are hard enough without having to take time out. Not having it would have meant I would have had to miss assessments, deadlines maybe even exams. It would have really affected my results and my whole future”.

Case Study: Diane – 55 years oldACSMA-Diane

Diane from Rickmansworth has been on anticoagulation therapy for over 40 years after developing a deep vein thrombosis in her teens. Diagnosed with a rare genetic thrombotic disorder, she was advised that this chronic health condition would require lifelong anticoagulation treatment. Adjusting to the management of her condition was challenging and involved taking regular days off school to attend hospital which was difficult during crucial stages of her education. At this time, there were no options available to self-test and this impacted on her decision not to enter Higher Education which would have meant moving away from the hospital that she trusted. After 25 years of attending clinics which involved negotiating time off work and disruptions to day to day living, she decided to start self- testing using a device designed to measure her INR. “This was a revelation, commented Diane. “It freed me from the regular visits to a clinic. For the last 15 years, I have been responsible for the management of my condition having ‘demystified’ the challenges surrounding warfarin and most importantly, now self-manage, adjusting my dose as and when required. “I am fortunate my GP wholeheartedly encourages self-testing and continues to support me and my son who has inherited the same condition. “Without the opportunities to self-manage, my life would have been very different; access to this technology has provided the lifeline to support me in achieving positive and productive outcomes in my personal health, wellbeing and career.”

Case Study: Yvonne

In 2005, Yvonne was diagnosed with antiphospholipid syndrome (Hughes syndrome). This is a potentially life-threatening, auto-immune disease that causes the blood to clot easily, and she suffered several mini strokes before being diagnosed. Yvonne has been taking warfarin for the last 7 years. Attending a clinic weekly had a very disruptive effect on her life; a single visit to the clinic to check the blood INR could take several hours and the results were often erratic. A year later, she was in a position to afford a self-testing monitor and hasn’t looked back since. She is now able to enjoy life to the full thanks to her CoaguChek XS meter. It has enabled her to travel all over the world with peace of mind that she can confidently measure her INR levels, adjust the warfarin doses as necessary and manage her condition effectively. During a trip to Hawaii, her INR levels unexpectedly deviated from the normal high therapeutic range, and believes that without her CoaguChek XS meter, she could have been seriously unwell. “I strongly believe that my ability to self-manage my condition has had a very beneficial and liberating effect on my everyday life” said Yvonne.

Case Study: Peter – 57 years old

In 2007, Peter suffered an acute, bilateral pulmonary embolism (PE), a life-threatening event that nearly killed him. He spent 5 days in hospital and 6 months living on warfarin. In 2009, he suffered a second acute bilateral PE and was back in hospital for another 5 days while he was stabilised on heparin and warfarin and was told he would spend the rest of his life living on warfarin. Two months later Peter was readmitted to hospital having fallen below his therapeutic range. Peter remained very unstable until in 2010, when he purchased an INR monitor and luckily his GP agreed to supply the test strips and support his self-testing. “Since self-testing and self-dosing”, said Peter, “I have not suffered any further events and am totally convinced that from my own experiences, weekly self-testing can provide a better therapeutic range.”

Case Study: Jane

Ten years ago, aortic valve replacement surgery left Jane with an unstable INR. She was prescribed the anticoagulant drug warfarin, but frequent visits to her GP for INR testing left her unable to work. It wasn’t until her daughter read about self-testing that she was able to retake control of her life. “I live in the west of Scotland and have been on warfarin since 2000, following an aortic valve replacement. My INR was not very stable for some time, meaning I had to visit my GP as often as three times a week. My daughter had read about self-testing and suggested it to me. At the time though, my GP hadn’t heard of it. Eventually we got in touch with a consultant who sent me some literature. By this time the hospital where I had my surgery had begun using a portable INR tester to test patients, initially only on an outpatient basis. We contacted the Health Board to explain how I would benefit from self-testing and they eventually agreed that if I purchased the machine, they would provide test strips and lancets on prescription. Self-testing has given me such freedom. Before I was on long-term disability benefit, and even though I had had my surgery, the time spent going to my GP was such that I couldn’t even contemplate trying to hold down a job. Since I have had my portable INR tester, I have been to university and gained a degree in psychology. I have also held down a full time job for the last three-and-half years; something I could not have done without my tetser. What once took me several hours per week, now takes up a few minutes of my time. I don’t have to leave my house, interrupt my work or wait for results. I simply check this myself and email my results to a nominated nurse at an Anticoagulant Clinic.”

Case Study: JohnJohnChisholm

After suffering an embolism, John has been on warfarin for over 25 years to help control his blood’s coagulation. After years of 16-mile roundtrips and long waits for INR blood tests, John discovered self-monitoring. “In 1985 I was actually on stage giving a lecture when I felt immense pain and collapsed. Ten days later I woke up in a hospital and was told that I had suffered an embolism to the right kidney. This resulted in a near total loss of that organ. I have been on warfarin ever since. It is important to remain within the stable range when you are taking warfarin. If your blood were too thick there would be a danger of another clot. If it is too thin, then there is danger of a bleed. You find that when you have been on the drug for a certain period of time, you learn that it is affected by changes in diet, sleep patterns and even alcohol intake. It is extremely important to keep an eye on it. I had to go to the clinic several times a week before I started self-testing. It was a sixteen mile round trip to the hospital and I usually had to wait over two-hours for a test. On occasions the clinic was closed, although I was there at the appointed time; the result of which was I couldn’t be tested that day. Self-testing changes your life. If I had to be sum it up in one word, it would be ‘freedom’. The test can be taken anywhere, at any time. I travel abroad a lot and always have done. Before, it was quite a headache to get my tests done overseas. I would have to be tested just before I went to make sure that the healthcare professional was happy for me not to be tested again until I returned. Now that I self-test I have the device with me at all times, meaning I can test anywhere in the world at my leisure. In my particular case, I forward the result via text, phone, or e-mail to the healthcare professional who doses me accordingly. It makes no difference if I’m two or two thousand miles away. I think more patients should self-test their coagulant levels. It encourages confidence and capabilities. I’m a prime example as it has made me more health aware. It has made me want to get fit, keep fit, and of course I now know the exact situation of my INR at any time of the day, if I need to. All in all, I look back and I can’t believe I endured what I did. But of course, you know no different at the time. If there is any hiccup in my general health, whether it’s the common cold, alcohol intake or a change of diet I am on the ball, so to speak. I can take the test. I know exactly what is going on inside this body of mine that hopefully is going to last an awfully long time.”

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