Monday, 20 February 2017

Long-lasting lethargy

Long-lasting lethargy

I originally intended to write the blog fairly regularly, though not setting myself any target frequency such as once a month.   I feel a bit guilty that the gap since the last one is so long.  Partly this is sheer laziness, partly this was due to a lack of energy on many days such that it took a huge effort to do more than read the paper and watch TV;  and partly that there has not been much to write, cardiac-wise as it were.   I am relieved that my ICD has remained silent, though thoroughly checked to ensure it was working properly.   My pulse rate is still irregular, but thanks to bisoprolol controlled pretty well around 60 – 70.  .I was feeling so well that we booked a holiday in Tenerife, mainly for the sunshine.  The flight was no problem, but lengthy walking at the airport can be tiring.  It was .nothing to do with the heart, but I did have a successful cataract operation at the end of November.
        The last few weeks have been uneventful as far as my Chronic Cardiac Dysfunction (CCDF) is concerned, though this can be difficult to interpret, as my medical condition is complicated by co-existing COPD.  I caught the prevailing adenovirus infection around Christmas; as usual this went to my chest.  I had terribly distressing coughs, and much worse Shortness of Breath than usual.  I had to give up even my bedroom exercise (bedex) programme.  Gradually I improved thanks to a course of Co-amoxyclav.   However as has happened before, after a wonderful period of gradually getting better, back to bedex, the wretched cough and SOB returned.  I am now on a course of Clarithromycin, and gradually improving.  I have even resumed bedex, gently.   The lethargy is getting less.  Whether this awful lethargy is caused by CCDF, COPD, depression or lasting effects of the adenovirus infection  I do not know.  I have resumed my walk round the block.  I can’t measure the distance, probably about half a mile, mostly flat, but the inclines, though slight, can be a bit challenging.  Last week it took me 15.18 minutes, today, a trivial triumph,  14.05 minutes.  I know most people could probably do it in half that time, but to me it is a sign of progress; I like to think a harbinger of recovery to “my usual normal.”  Is it too much to hope that the period of cold and damp will soon be over, and we can welcome Spring? 

Wednesday, 21 September 2016


I don’t normally use many exclamation marks, they are often unnecessary and it is easy to overuse them.  Today I make an exception.  I have just come back from Worcester, and got the all clear from the arrhythmia clinic.   I have been extra careful the last six weeks, in fact over seven weeks, since the implant; during this time.  I have not been allowed to vacuum, mow lawns, lift anything with my left arm heavier than a book, or to raise the left arm above shoulder height.  Even putting on a jacket or tying a tie needs concentration to keep the left arm below shoulder level.  One of the doctors put the fear of God into me if I didn’t observe these restrictions, how the electrode could become displaced, when the device would need reinserting. 
         However this morning, with great speed and efficiency, the cardiac technician had her machine talking to my implant.  “All good, no runs of fast beats, just what we want.”.  Then she mentioned something not included in the mass of literature provided at the initial consultation.  She made my implant vibrate.  This is rather subtle, a gentle buzz by the ICD, easy to miss if I hadn’t had the test.  If this happens it is not serious, but the clinic should be informed so that they can check and make adjustments to the implant if necessary.  So my next appointment is six months away; I can mow lawns, dig veg patches,and do wall press-ups with both arms.    Hooray!  This is an Oyster Bay day. 

Saturday, 3 September 2016

Heart failure misnamed

Heart failure by another name would sound less bitter

I wish I could write a witty line to parody Shakespeare.  I believe, however, that this sentence contains good sense.  Heart failure sounds deadly serious, almost terminal.  I shall never forget, following a day in hospital after an attack of atrial fibrillation and a battery of tests, the visit to the consultant cardiologist to review treatment.  I learned I had heart failure.  Both my wife and I were shattered.  I knew I had COPD and got short of breath on too much exertion, and knew I had an irregular pulse.   But the diagnosis of heart failure was new and devastating.  I am a doctor, however, and soon recovered a sense of perspective.  
I read up about heart failure.  I read the British Heart Foundation booklet and the excellent book I have mentioned before, Kasper and Knudson’s "Living well with heart failure."  It is subtitled  “The misnamed, misunderstood condition.” Their title “Living well with heart failure” carries this positive connotation. Heart failure is misnamed I believe because the word failure is so negative, almost terminal.  Heart failure, though serious, is compatible with a happy and useful life when treated effectively.  The problem is that the misnamed term is so well established that it won’t be shifted easily, and there is no obvious alternative.  Comparable to COPD, I would tentatively suggest CCD as a less emotive term than heart failure, and I hope sufficiently accurate.  CCD would stand for chronic cardiac dysfunction. 

Tuesday, 30 August 2016

Increasing confidence with ICD

Increasing confidence with ICD

The doctor who assisted with the ICD implantation put the fear of God into me by warning that I must not put pressure on my left arm, raise it above shoulder height, etc.  And keep this up for six weeks.   It is exactly four weeks today since the implantation, and I feel increasingly comfortable with the device.  Of course I can feel it, neatly nestling under the skin, but there is no trace of tenderness.  I can move my arm with no discomfort, and I have even managed, comfortably, to sleep on it, my normal position for sleep. 
The problem now is that I feel fine, and am at risk of forgetting the restrictions on movement.  I potter in the garden, but I have to remember it must be in a one-armed way.  I have to get my wife or someone in the family to lift eg compost bags when I cannot do this comfortably with the right hand, or move a wheel-barrow which certainly requires both arms. 
In response to my informing the DVLA of the ICD insert, I had a formal response asking lots of questions about my condition, demanding a list of clinics, addresses of consultants and requiring me to give permission for medical information to be obtained.  Today I received a brown envelope with a formal response from the DVLA,, stating that I could retain my normal licence.  Praise the Lord!  I have still three days to go until a month has elapsed since the insert, when I can drive again.  I find it strange that in a legal requirement, the imprecise month is used, rather than 28, 30 or 31 days.  I would prefer it to be as short as possible
Today we went to Stratford, accompanied by my lovely Susan, my elder daughter visiting us from Cyprus.  Lorraine drove.  It was a lovely sunny day.  I was able to do a lot of walking, albeit slowly because of wretched osteo-arthritic knees.  No shortness of breath, thanks to medication and magnesium supplements.   This amount of walking is something I could not imagine doing earlier in the year.   All for the sake of retail therapy.  The principal retail therapy,  requiring Susan’s expertise,  was buying a refurbished Sony laptop, on which I am typing this blog.  Next Friday I will be allowed to drive, and in two more weeks, if the check-up is OK, to move a wheelbarrow and such other routine activities we take for granted.  Wonderful things to look forward to.   There are times when living with heart failure is not too bad. 

Tuesday, 23 August 2016

No longer implantable, now implanted

No longer implantable, now implanted

I have had an ICD implanted.  This was done as an outpatient at Worcester  On the appointed day, there was initially a long wait as the patient before me proved “tricky” and had to be kept in overnight.  When my turn came, it was done under local anaesthetic.  All done very efficiently and painlessly, the procedure lasting less than an hour, then recovery, checks that all was well and X-ray to confirm the wires were in the correct place  It was not nearly as scary as the letter to my GP, copied to me, by the Arrhythmia Consultant.  My ambulatory monitoring showed: “Narrow QRS complexes and a high burden of ventricular ectopy.”  Not really sure what that means, but I am definitely at risk of something nasty such as ventricular tachycardia or fibrillation, hence the need for the ICD. 
            I am not allowed to drive for a month, not just for medical reasons,  but by law.  I have informed the DVLA and my motor insurance company.  This is a nuisance as now I feel fine.  I have, for four to six weeks, to avoid lifting or carrying anything heavy in my left arm (not vacuuming or lawn mowing for example) and should not raise my left arm above shoulder height.  I have studiously observed these requirements, but have had to check myself once or twice from doing something as simple as putting both arms behind the neck when relaxing in bed.  Still the six week check up is getting closer, though it seems tediously slowly, while garden jobs are piling up, in spite of Lorraine nobly doing many of them.  I just have to hope that the check up will show the electrodes have not become displaced and that the device is working properly.  Then I can go full speed to catch up on gardening and wall press-ups etc.  Not to mentioning vacuuming.  Dear Lorraine has undertaken extra work brilliantly, including driving me.  I’ll take her for a celebratory meal when the check-up is over. 

Sunday, 3 July 2016

Death and defibrillators

Anyone who is diagnosed with heart failure is bound to think about death.  The heart is vital.  Failing suggests the end is nigh, right?.  Well, we know it is not as bad as that.   Kasper and Knudson in their useful book “Living well with heart failure” subtitle the book: The misnamed, misunderstood condition.”  Unfortunately a more accurate term has not found favour.  But apart from gradual deterioration, sudden death is a possibility for some patients. 

All this is a preamble to my latest visit to a cardiologist, who specialises in ICDs (Implantable cardioverter defibrillators).  My cardiac specialist nurse had suggested it was not necessary in my condition.  So I expected it would be a nice quiet chat.  However I was more than a little shaken to be told, very nicely and considerately in the event, that I was at risk of a serious arrhythmia.  How likely this was he couldn’t say, but I was at risk.  

He discussed the pros and cons of ICDs.  They are inserted in the chest, under local anaesthetic, with a wire attached to the heart.  This can usually be done as a day case.  You are forbidden from driving a car for one month afterwards.  There was a risk of bleeding, puncture of the lung etc, but the risks were rare and usually easily treated.  The ICD contained a clever computer that monitored the heart beat, and in the event of a serious arrhythmia developing, would produce a shock to correct the abnormality.  Just like the “stand clear, charge at 200” episodes in medical soaps on TV.  Except it is done instantly, in your own chest.  It doesn’t treat the heart failure or make you feel better.  The cardiologist used the analogy of an air bag:  “They won’t make you drive better, they can’t prevent accidents, but in an accident they could save your life.”   All good.    The only real snag appeared to be that on occasion the ICD could misinterpret the heart beat and fire off a shock when it wasn’t necessary.  Ouch!  You get a big thump on the chest. 

Having discussed this with my wife, Lorraine, we decided to go ahead with it.  There will be the usual NHS delay, some six weeks or so.  Interestingly, the fact that I am currently feeling well, as well as I was a year ago, before the attack of atrial fibrillation and the diagnosis of heart failure, was a strong point in favour of having an ICD.  If I were in dire straits, miserable, in serious decline, having an ICD would not be indicated.  So the decision is made, and we just have to hope nothing bad happens while we wait.  

Wednesday, 15 June 2016

Managing medication

My cardiologist and his deputed Specialist Cardiac Nurse Natalie, tell me that the aim for my medication is gradually (0ver 1 - 2 weeks) to increase the dose of beta blocker (bisoprolol) and ACE inhibitor (ramipril) from the original dose of 1.25 mg/day to 10 mg/day.  This is in line with the American Cardiology Society and Nice in the UK.  Such a big increase is dependent on the patiant's response; blood pressure must be measured regularly.   I personally wondered how the dosage was decided, now that such recommendations are supposed to be based on hard evidence (usually a double blind controlled trial).  Would anyone really go to the trouble of a large double blind trial to compare say the dosage of 5 mg/day with 10 mg/day, comparing symptoms and more important, outcome, ie duration of life?  To be meaningful, it would  take many months, probably years. If so I would love to read the study.  The authors of my favourite book on the subject "Living well with heart failure" state:  "there are likely to be ony small differences in efficacy between low and high doses."

 In my case it was decided for the time being to fix the dose of bisoprolol at 2.5 mg/day, and to increase the dos of ramipril every few days.  This went on till the dose of ramipril was 5 mg/day; daily blood pressure readings were near the ideal of 120/80.  Natalie was pleased with my progress.  But I was beginning to experience frequent light headedness  when I stood up. I tried rising slowly and deliberately but this made little difference.  One day at a friend's house I felt severely dizzy, which didn't pass away for several minutes.  Scary..... I didn't pass out or fall, but it was close to it.  I saw Natalie ASAP.  Although sitting blood pressure was normal, when measured standing it fell to something like 70/45.    It was agreed to reduce the dose of ramipril to 2.5 mg/day...This has remained the dose for several weeks now, and mercifully the attacks of light headedness have stopped.  It is clear to me that blood pressure routinely must be measured standing as well as sitting.

I have tried to be as active as possible with regular exercise, though I am not managing enough.  Proper aerobic and resistance exercise is not easy when energy levels are low, as mine were for week after week.  The last few weeks have been much better, and I have plenty of energy for gardening, sometimes dodging between showers in this wet, wet June.  Gardening may not be aerobic exercise, getting the heart rate up, but at least it is better than sitting down reading.  It uses many muscles gently, and involves bending and stretching.  Meanwhile I have increased my personal record for sit/stands to 53 in 4.0 minutes.    Increasing that will be hard.  At any rate the garden is looking preety good.