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Patient Stories

David Fisher, from Salisbury, has been a regular at the unit for more than 22 years having more than 500 treatments. Here he talks in his own words about how important the service has been in his life.

With hindsight, the first recollection of the warning signs of Familial Hypercholesterolaemia (FH) was aged 23/24 back in the late 60s early 70s.  At the time I was a member of the police force stationed in Swindon.  I visited my GP with my ‘lumpy knuckles’ as I was concerned that I was going to end up like my grandmother who had similar knuckles.  Like her, I was diagnosed with arthritis, although I had no other symptoms. 

With hindsight, the first recollection of the warning signs of Familial Hypercholesterolaemia (FH) was aged 23/24 back in the late 60s early 70s.  At the time I was a member of the police force stationed in Swindon.  I visited my GP with my ‘lumpy knuckles’ as I was concerned that I was going to end up like my grandmother who had similar knuckles.  Like her, I was diagnosed with arthritis, although I had no other symptoms. 

In 1975 I was posted to Salisbury following the sudden death of my father aged 61 years.  He had suffered a heart attack. 

I was transferred to CID from the traffic department and I have to confess that I burnt the candle at both ends and lived life to the full.  I smoked and drank fairly heavily and was the typical detective as portrayed in the TV programme ‘Life on Mars’ – even down to the leather jacket!

Picture of patient having treatment

Towards the end of August 1981 Jo, my wife, our two children and myself had spent an idyllic two week holiday travelling daily to Dorset where we had a small motor boat.  On 31 August we were on the boat and I spent some time swimming under the boat cleaning the hull.  I had to stop as I became aware that my heart was not beating normally and I felt quite unwell.  I did not have any pain, I just felt very strange.  Jo suggested that we should go home, which we did.

In the car on the way back to Salisbury we suffered a smashed windscreen which was like a small explosion.  Jo and I laughed when she commented ‘there can’t be much wrong with your heart if that had no effect!’

The following day, 1 September 1981, I was due back on duty at 4pm.  During the morning I was out in the garden having a cigarette when I had a severe pain down my left arm.  I had no idea what it was but was sufficiently shocked to go indoors and have a large G & T to calm myself down.

That same morning, I cannot now remember how much longer afterwards it happened, but I remember standing in our living room when again I had the pain, this time so severe it put me on my knees.  Another G & T was called for and this time I telephoned Jo, explained what had happened and asked her to telephone work and tell them I was not coming in.

I then went to bed feeling that something was very wrong, but no suspicion of what it was.  My judgement was now probably clouded by the G & Ts!

Not long after that, Jo arrived home, speedily followed by our doctor.  After a brief examination, the doctor said I should go straight to Casualty as he suspected a heart attack.  Although the doctor quite rightly wanted to call an ambulance, I was my usual stubborn self and insisted it was quicker for Jo to take me in the car, mainly because I wanted another cigarette! (The last one ever!)  I was then 35 years old.

From then on my life changed dramatically.  After leaving hospital I returned to CID in an admin role, but then left CID to work in the Control Room of the Police Station.  Our children were then aged 12 and 9, and we were living in a Police Authority house.  At this time I felt secure as I was now in a non ‘front line’ job.  It was a little later that a friend of ours, who happened to be an insurance broker, advised that we should seriously consider buying a property.  At that time it was possible for police officers to obtain a 100% mortgage covered by an endowment mortgage with no health questions asked.  This was about to change and would have meant we would probably never have been able to purchase a house.  So, with no savings we duly took the plunge.

Within months of moving in, despite having been reassured that my job was safe, I was horrified to receive a memo stating that due to my illness I was to leave the Police and given three months notice.  We were devastated.  I immediately started to look for work and through one of my contacts was fortunate to find another job with a local solicitor in his Criminal Defence Department.  Our income dropped considerably, but at least it was a job.  I took this up in November 1983.

Health-wise I was aware that all was not well and felt very tired and at times would have to hang on to things whilst walking around.  Eventually I had to undergo triple bypass surgery.  Regrettably, I suffered a clot on the lung and following the operation was quite poorly for a while.  When I returned for the check up with the surgeon I was told to go and get on with my life as all was now well.

Eighteen months later I was back in Casualty with chest pain and finally referred to Dr Giff Batstone, the lipid specialist then responsible for patients in my area.  My cholesterol levels were very high when I first started to see him.  It was only at this stage that I was informed that I had FH and the consequences of the disease.  Quite a blow having had a heart attack already, bypass and still chest pain. He could not bring my levels down to sensible levels with drugs and mentioned that he knew of trials taking place at Llandough Hospital, Cardiff called LDL Apheresis.  He asked if I would be interested in going to the hospital and meeting Dr Stephanie Matthews who was running the trials. I could not get there quickly enough as I felt that I was being offered a lifeline.

I duly met with Stephanie, but was devastated to learn that I could not take part in the trials because I had already had surgery.  I could however receive treatment if I paid for it. To cut a very long story short, with the help of BUPA and Kaneka , one of the companies who make apheresis equipment, I was able to fund two years treatment.  I started my treatment on St David’s Day in 1991.

My recollection of my cholesterol levels during this period is pretty hazy, but I know that I had total levels of 13 mmol/l  at one stage and this was about 10 mmol/L  when I started on the treatment at Llandough. This is about double the cholesterol of most people. I have now been on the treatment for 21 years and during that time I have had pretty static levels around 6 mmol/L.  There was a golden period in 2011 when the level was 5.3-5.6 mmol/L, but I now seem to hover around the 5.9-6.5 mmol/L.

During the time I have been receiving treatment our children and grandchildren have also been diagnosed with FH and with the exception of the youngest grandchild, are all being treated with statins.

To accommodate the treatment we both had to arrange with our employers for a day off every fortnight we both finally worked ‘compressed’ weeks to have the day off.  We usually started work at 7.30 am every day to make up the hours.  Then of course on our ‘day off’, we got up even earlier to travel to Llandough for treatment day.  It takes a good two and a half hours on a good day – bad days can be anything from 4-8 hours.  In the early days we travelled by train and hired a taxi from the station to Llandough.  Eventually this became too expensive and was increasingly inconvenient when trains did not arrive or stopped before we made it back to Salisbury.

We now travel by car which is fine in the summer months, but in winter when the weather is really bad, we travel on the afternoon before and stay at a Premier Inn.  However, this is also becoming very expensive with fuel costs and with me retired and Jo retiring shortly, finances will become tight.

I have now had 500 treatments and despite the journey and problems associated with it am extremely grateful for each and every treatment.  I am only too aware of what the prognosis would have been in 1991 without it.

Some years ago when the treatment was in its infancy we were filmed and interviewed for the news and Jo said at the time that thanks to LDL Apheresis we had hope for the future, hope that we may reach retirement together.  Well, we made it!

Finally, I want to say that over the years there have been times when for one reason or another, the treatment has been quite literally, a pain.  However, thanks to the girls who deliver the treatment, it is more often than not, like being an extension of my house.  It is more of a family atmosphere and I certainly regard the staff as my friends, friends that I can talk to no matter what the problems are and I know that I can always pick up the telephone and be reassured should I ever have the need.

 

 

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