The Pharmaceutical Journal
Vol 268 No 7184 p183
9 February 2002

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Warfarin and diuretics

Pharmacists, who are also patients, describe in their own words what it is like to have to take a medicine for life

Living with warfarin and diuretics: so hard to be compliant

I was born with ventricular septal defect (a congenital heart defect) and in 1966 had surgery to repair it, but this left the aortic valve damaged and leaking. Surgeons believed that at six years old, it was rather too early to repair or replace the valve, given that it would only need to be replaced again as I grew. Another hospital stay in 1976, with bacterial endocarditis, gave me a first exposure to hospital pharmacy and ward services. But, finally, in 1989, the decision was made to replace the damaged aortic valve with a mechanical one, which necessitated continuous anticoagulation.

Regular blood tests and the challenge of not forgetting doses have continued ever since. Taking a regular dose with the evening meal is of course easy, however it is easy to forget if you change routine (eg, go out straight from work and return much later). Similarly, becoming habitual also means that while you think you took a dose yesterday, and you haven't changed your routine, you may not actually remember taking it. And the dose, is it 4mg daily and 5mg on Wednesdays and Sundays or 5mg on weekdays and 3mg at weekends? Who ever carries their dose book with them?

Dramatic changes

After more than 10 years taking warfarin and occasional prophylactic antibiotics for dental treatment without significant problems, things changed dramatically in February 2001.

After taking sick leave from work with what was assumed to be depression and a really horrible experience with amitriptyline, I was referred urgently to my own hospital where the diagnosis was revised to congestive heart failure. Body weight assumed to have been gained from over-indulgence began to disappear with the intravenous diuretics, far from the the most pleasant of treatments! Add in an ACE [angiotensin converting enzyme] inhibitor to reduce blood pressure and promote left ventricular remodelling (pity the study hadn't happened earlier, it may have prevented things developing). I develop the "ACE cough". Realise how different it is to what we tell patients.

Get to know the location of every garage with public facilities between home and Birmingham. Curse diuretics, visiting men's room every half hour through the morning and never get more than three hours uninterrupted sleep. Learn to get up, wait for BP to settle, cross landing, return to bed all without opening more than half an eye. Notice the traffic through the night.

By June, ACE cough a real pain, embarrassed to go to any meetings. Notice jugular pulse in neck is throbbing and heart rate seems a bit fast. Call into A&E and ask friendly senior house officer to check blood pressure. SHO looks worried, moves me from chair to couch, couch to trolley and trolley to resuscitation room! ECG confirms supraventricular tachycardia (breathe heavy sigh of relief it did not progress to VT). Treated with bolus injection of lidocaine, followed by infusion — felt like I had been hit by hammer as heart rate drops dramatically. Fight to remain conscious as room swims and eyes black out. Initiated on slow loading of amiodarone, but recurrent runs of SVT meant faster loading. Persuade cardiologist to change ACE to A2 (even if it is unlicensed). Cough disappears within two weeks.

During July and August my GP and cardiologist are repeatedly tweaking my medication. Add in metolazone (and I thought bumetanide was aggressive!), increase dose. Urea and electrolytes go off, so reduce metolazone and add in spironolactone. Weight still a problem. Try increasing metolazone dose and reducing if weight falls. Curse makers of metolazone, tablets disintegrate when I attempt to split them. With me and most other patients on a 2.5mg dose, why is the tablet 5mg?

From October to December, my cardiologist was concerned about increasing oedema so he arrange a further hospital admission for "intensive diuresis". Three days of IV bumetanide produce no significant weight or fluid loss, but at least it proves the bioequivalence of oral and IV dosing.

I am now being followed up by friendly geriatrician with whom I drop off my cardiologist's clinic lists. Add in digoxin, increase spironolactone, reduce metolazone. Geriatrician admits he is out of his depth and finally I am referred back to the cardiologist. Decrease spironolactone.

Labelling can be a nonsense

In January 2002, my U&Es were still erratic. Metolazone increased to force some more diuresis, then decreased as blood results drop further into red. Increase spironolactone. Realise by now, that labelling of medicines becomes a nonsense, with doses being changed mid-way through the patient pack. Double up one week, split the tablet the next. Thankful I know what I was last told, since no medical records can keep up with the changes. Six-and-a-half tablets for breakfast, three for tea; must get to work or meetings within 20 minutes or have to take a comfort break en route. Keep packs of bumetanide in diary, in car and in office desk in the hope of remembering to take lunchtime dose — it is even harder to be compliant with these than it was with warfarin because there are so many distractions, but I try.