Interview HF38

Age at interview: 59

Age at diagnosis: 58

Brief Outline: Ischaemic heart disease diagnosed 2001. Heart bypass 2002. Heart failure 2002.

Background: Retired GP; married with 2 children.

After his diagnosis he felt concerned about his family.

Well [pause], the point is I needed to know why, because one of the main concern of course when you have responsibilities of a wife and family is that you take any appropriate steps that need to be taken to secure them. And a lot of the illnesses which cause sudden heart failure actually are quite serious, and prognosis is poor, cardiomyopathy for example. So... drifting into heart failure and then having a big heart, cardiomyopathy, was actually the more probable of the diagnoses. That meant I probably wouldn't live perhaps beyond a year. So... for me it was to sort out a diagnosis, then to see was there treatment.

He finds it unhelpful to speculate about causes of heart failure.

I think it's a difficult question. People ask it, I think the family would like to know the answer to that question... I think... I had two jobs; I was medical director of a health authority which was a very high pressure job, a high-profile job, many many big public meetings, much responsibility for my patch trying to improve and change things, plus I'd kept my general practice going as well. So a lot of stress, but I don't think heart failure is caused by stress myself, ischaemic heart disease... I suspect is in my genes. I've got a lot of Welsh genes and I think that may be the majority of it! [smiles]  I did smoke when I was a young man but I gave that up by the time I was 25, so I can't blame smoking. 

I actually think its unhelpful to waste time wondering 'why', because no answer to the 'why' really helps with the question about 'what do we do next', and I think for myself it was more difficult to get my head round a prognosis, what the future would be for me, because... again you ask questions which people can't answer, and I suppose as a doctor I should know that my cardiologist couldn't tell me how long I was going live. But when you have a lot of things you want to do, get sorted out, it would be nice to have a much better idea of... the prognosis that you face. 
 

If he lies flat he wakes up early and coughs.

Well if I get flat, and of course I have got a bed with lift now, but you tend to slide down, and if I'm lying flat then often I'll wake up probably breathless but maybe with a coughing attack. Coughing is a real problem for me when I'm flat. And I wake up also early in the morning, when I wake up 4 o'clock, 5 o'clock, 6 o'clock but I'll often to off to sleep again for a bit, but I'm always up by 7. Just to go to bed and have an interrupted nights sleep and wake up at 8 o'clock would be delicious, but it isn't happening, and we nearly two years in now, so I don't think it's going to come back.  

He couldn't find an answer to his question about the ejection fraction test on the internet.

I mean life tables are based on diagnosis and outcome, so if someone is diagnosed with heart failure, then if you ask how... at what point will 50% be alive and 50% be dead, the answer at the moment is 16 months, which for me was February this year and it's now September, so it's actually quite nice to have passed that point! But there have been recent reviews, you know I still get the British Medical Journal and read it, and one can see that these figures are improving. Obviously it depends on how bad the heart failure is when it's diagnosed, and there are various tests, there is the echo-cardiogram ejection fraction test, which if it's showing a poor heart pump rate gives you a worse prognosis, a worse outcome, mine actually was quite low, so that did incline me to the sort of worst end of the spectrum.                                        

No, no I didn't really find answers to some of the questions I was looking for on the net,  for example I... the ejection fraction test, I knew what my ejection fraction was but I didn't know what the norm was and when you're told your ejection faction is 25%, you know that in a sense that's a quarter of normal and I didn't think that could be right, but I actually had to ask my consultant what the 'normal' was and then he wouldn't give me a really clear answer because I think there are different definitions of 'normal', but the answer broadly was around 60% is normal, so 25% of 60 isn't too bad you know it's half, it's not a quarter!  So you know I'm quite a sort of a competent internet user and I didn't find it terribly helpful.

He wonders whether his ejection fraction was normal and what it meant.

No, no I didn't really find answers to some of the questions I was looking for on the net,  for example I... the ejection fraction test - I knew what my ejection fraction was but I didn't know what the norm was and when you're told your ejection faction is 25%, you know that in a sense that's a quarter of normal and I didn't think that could be right, but I actually had to ask my consultant what the 'normal' was and then he wouldn't give me a really clear answer because I think there are different definitions of 'normal', but the answer broadly was around 60% is normal. So 25% of 60 isn't too bad you know its half, its not a quarter! So you know I'm quite a sort of a competent internet user and I didn't find it terribly helpful.
 

He takes warfarin, digoxin, frusemide, spironolactone, atorvastatin, bisoprolol and aspirin.

Frusemide and spironolactone [pause] and that rids me of fluid in the mornings. I'm on a beta-blocker, bisoprolol.  I'm on atorvastatin to reduce my lipids which were high and part of the reason for it happening I suppose. I'm on digoxin, the old foxglove treatment, to keep my heart rate down. I'm on anti-coagulants, warfarin, to keep my blood thin to prevent a further clot developing in my heart and another embolus happening. I'm on aspirin... and I'm on treatment for gout, Allopurinol, and  I'm on an Ace inhibitor... which [smiles]... it's silly isn't it!

He had bypass surgery to reduce his chances of sudden death.

Well there are a number of tests done, and the disease was found to be ischaemic heart disease... and amongst other findings was that I had some severely blocked major arteries in the heart. The muscle of my heart is badly damaged, and my specialists told me it was unlikely that surgery would actually improve the quality of the muscle that had already been damaged, but my chance of sudden death would be reduced they felt, so I went forward for a coronary artery bypass operation in January of 2002, a little uncertain as to whether it had been a sensible thing to do, because I think the evidence as to whether I should have been managed medically or go through the surgery were pretty finely balanced. I think my family were keen though that I had the surgery and it was important to me that everything was being demonstrated to be done that could be done.  

So I had the surgery, and then I hit the problems that nurses and doctors get when they're in the hands of their colleagues. My heart went into very strange rhythm problems, and because I'm a doctor as was well-known in my hospital, (though I'm a GP I was very well-known in my hospital), the junior doctors waited until the consultants were able to see me and sort out my problems. As I say there was quite a delay sometimes between me developing problems of my rhythm and somebody actually deciding what to do about it, and that is one of the disadvantages of being a doctor in that situation.  

He has been refused medical insurance for travel to America because of heart failure.

Or [pause] perhaps more important has been the fact that I can't get travel health insurance at the moment. (I think somebody should help... help us look into this.) So... my wife's going over to see my daughter in America in a fortnight's time but I, I won't go because I wouldn't run the risk of being in America without adequate health insurance, travel insurance... I was insured through the BMA scheme - British Medical Association scheme - but they have told me that they will not insure me under any circumstances at present. 

I believe I have some cover through my Visa [card] but I'm really not sure when one is asked questions by the by the Visa company people whether if one really had a big claim in America let's say, whether they would consider that you were covered or not. But ordinary insurance such as you go to buy from the bank or building society or travel, travel agency, if you're honest and say what you're on, and what in my case has happened to me, then there is a point blank refusal to give you cover.  

So your world's shrunk a bit, your opportunities? 

'One time I was sort of momentarily a bit tearful was when having been promised by the BMA travel people that if I fulfilled certain criteria - periods of time following surgery and so on - then I would be covered, was to ring up and be told, 'Well we've changed the rules and we won't cover you under any circumstances,' that's when I felt my world had come in on me rather.  

His family are reluctant to talk about end of life issues though he thinks it is important.

And I think one of the difficulties being ill or being faced with the uncertainty is that the family find it very hard. But I need to talk about the fact that I want to get assets and money into my wife's name, that I want to get us moved, I want to sort of get things straight as possible... [and] these aren't conversations that the family wants to have, and so there is a slight difficulty there. I think... families want to pretend that nothing is happening and everything is normal, and you can be painted as being rather morbid, whereas in fact you're being organised. It is difficult, but then of course this applies to many illnesses this is not specific to heart failure.