Personal experiences of anticoagulation therapy >

WARFARIN - The thoughts of a new user

A little over ten years ago when participating as a volunteer in some memory research to see if early indicators of Alzheimer's could be related to early memory loss, a medical examination revealed that I had a slightly irregular and slow heart beat. I well remember a quickly arranged ECG and then an appointment with a cardiologist. He decided that I should have a 24 hours heart monitor. In the end it was decided that there were no underlying reasons for the irregular heart beat. In some people it is a regular occurrence and I could forget about it. My heart was healthy and my blood pressure was as good as it could be. In any case, I was athletic, had never smoked and drank nothing more than the very occasional glass of wine. I ate a balanced diet containing little red meat and plenty of fish and had my five helpings of fruit and vegetables a day My weight was ideal for my 6ft 1in height and my cholesterol was low. I could in no way be a candidate for any heart problems.

Seven years ago I had a hip replaced. At pre-admission clinic reference was made to my irregular heart beat, but everything seemed OK. Post operation was a bit traumatic. My blood pressure had dropped to be dangerously low and with other little complications, my initial recovery was a little delayed. However, rapid progress allowed me to be considered for discharge after six days, except for my blood pressure. However, a look at my notes indicated that I had gone in with relatively low blood pressure and I was duly discharged. Nothing had caused me to think that I might have a heart condition in the offing.

Three years ago I had the other hip replaced. We went through the same questions with reference to the irregular heart beat at pre-admission and when it came to discharge 48 hours after the operation, low blood pressure again seemed to be the only obstacle, quickly cleared when it was realised that when I had gone in it was relatively low. Again I did not think that any of this could be a precursor to a pending heart condition.

In late December 2005, whilst contemplating my computer screen with my hands on my neck, I realised that my irregular heartbeat was quite noticeable and the pulse seemed very slow. On the strength of that, I went out and purchased a heart monitor. My blood pressure was where I might expect it to be, but my heart rate varied between 35 and 40, when I would have expected it to be around the 60. I thought that a chat with my GP would perhaps be a wise precaution, especially as he was a bit of a heart man anyway. I saw him on the Friday and by the following Wednesday lunchtime had had a dual chamber cardiac pacemaker fitted to treat my bradycardia. Who says that the NHS does not react when needed? The early signs of my heart not working quite as it should now had a little more significance. The advice that I received following the fitting of the pacemaker was to go away and forget about it. They would see me every twelve months, but the battery should see me over the next ten years when it will need to be changed.

Unfortunately, that was not quite the case. At the six weeks check of the performance of the pacemaker after installation, it was found that my heart was not performing quite as I might have been wished and a check in six months was arranged. This established that I was experiencing mild cardiomyopathy and that my heart had gone into atrial fibrillation. That did not cause any great surprise, bearing in mind that there had been some previous paroxysmal fibrillation. With this revelation, it was decided that I should go on to warfarin in preference to the 150mg per day of Aspirin I had been taking for other reasons for longer than I can remember. In my naivety I thought that was just a matter of stopping one set of pills and taking another. No-one explained at that time that I would be needing blood tests every four or five days and would be taking varying doses of warfarin to get my INR as it should be. Indeed, going for my first blood test, I was not aware that there was such a thing as INR not alone what it might be. The Sister taking my blood did give me a booklet on coagulation and more importantly a back number of INReview. It gave me a lot of useful information and I immediately took up a subscription for INReview. I also got a copy of "Living with warfarin". I had a look on the Internet for information, but found too much. I did not raise an eyebrow when prescribed three packets each of 5mg, 3mg and 1mg of warfarin. I really should have thought why there was such variety. When told to start on 5mg of warfarin per day, I thought that was it. Little did I know what was coming. I was moved to 4mg per day, then to 3mg and 4mg on alternate days. That was followed by 3mg on Wednesdays and Saturdays with 4 mg on all other days and so on for one or two more changes. As soon as I achieved reasonable stability, I was to start on more medication, which would have some significant impact on the warfarin and so the balancing procedure started all over again. This was slightly complicated by the fact that the medication started off at a high dose, reducing weekly to the eventual 'one a day'. Although I feel that I should have been given far more information at the outset, it is surprising how quickly information comes together. Without doubt reading INReview has been a boon, together with ACE booklets. An exchange of emails with an Area Contact also prepared me for some aspects. Chats with the blood takers and the warfarin clinic personnel giving me my results has also helped.

I have obtained information on self-management with our overseas touring caravan holidays in mind. However, I think that it will be a while before I consider that route. I feel that I would miss the rapport with my local blood clinic, which is only five minutes away, and the warfarin clinic. I prefer to concentrate on establishing a consistent menu in order to maintain a constant INR, which can only lead to much longer intervals between testing. In this respect, I can see that the guide on warfarin Interaction to be published by ACE will be an asset. It is important that I achieve less frequent testing. When I told the holiday Insurers of my change in circumstances, they immediately suspended my cover in respect of any cardiac related illness. When I can demonstrate that I have gone for eight weeks with INR testing no more frequent than every two weeks, then the reinstatement of my complete cover will be considered.

I have only been on warfarin for a little over two months, but already I feel that I know what is happening and why. On reflection, had I been told about everything ahead of me, I might have felt somewhat dismayed. I still feel that I should have been told just a little more at the outset, but all in all have been surprised how quickly you get to know what you need to know, especially with INReview as a reference book.

If there are any newcomers to warfarin, or anyone else come to that, who would like to compare notes, or exchange views, then please do not hesitate to make contact on email: lionelr@waitrose.com