Guest blog 1 – Paul Griffin, Early Experiences with Dilated Cardiomyopathy

Jackie has very kindly asked me to provide some of my early experiences of Dilated Cardiomyopathy mainly, I think, because I have been living with DCM for 18 years, have had 2 ‘ordinary’ pacemakers, 4 biventricular pacemakers and I helped set up and run two Support Groups in different parts of the country. First off, for any newly diagnosed cardiomyopathy sufferers, there are two golden rules. Firstly, most people diagnosed with cardiomyopathy these days can expect to live a normal life span and secondly, no two cases are ever the same.


My first indications of something wrong were chest pains on exertion (cycling) then waking up in the middle of the night taking, a few deep breaths and going back to sleep. I took myself off to my GP. The next thing I knew I was in the cardiac department of my local hospital having my blood pressure taken, my height measured, my weight checked, a blood sample sent for analysis and having the first of several electrocardiagrams (ECGs) and an echocardiogram. And the upshot of all these investigations? I was diagnosed with Dilated Cardiomyopathy (DCM). This was February, 2000. It then took almost 2 years in order for me to reach my maximum dosage of medication and stabilise. One of the main problems was that, every time the dose was increased, my blood pressure fell through the floor for a couple of days but, gradually, my body became used to the new dosage.


Because my heart was physically so large, it took a few nano-seconds longer for the signal for my heart beat to travel from one side to the other. Consequently, one side was slightly out of synchronisation with the other. I was advised to have a 3-wire pacemaker fitted. The norm is a 2-wire. Unfortunately, the location of the third wire in the heart of some patients is very difficult for the surgeon to access. This was the case with me so I had to ‘make do’ with a 2-wire. That was in March, 2002


The operation was carried out to  try and fit a biventricular pacemaker under local anaesthetic with dio-morphine given intravenously so I was able to watch what was happening on the TV screen.  An x-ray machine is placed over the heart, an incision about 2” long made just below the left collar bone if your right-handed, right collar bone if your left-handed which is where the pacemaker sits and then the catheters are passed along veins to the heart, which is the bit I could see on the screen. Fascinating stuff! The reason for the choice of which side the pacemaker is located is simply to make life easier for the patient during the healing process and to put less strain on the wound.


When you consider the surgeon is working in three dimensions and his view is only in two and he’s trying to access a beating heart, quite honestly, it’s a wonder to me the procedure is ever a success. One slight problem we had was that, because of the number of attempts the surgeon had to make trying to fit the third wire, time had run out on the dio-morphine and he had to sew me up without anaesthetic. Not much fun I can tell you! The difficulty with fitting the 3-wire pacemaker, of course, was why I ended up with the 2-wire.


Modern pacemakers are terrific pieces of kit. Being only about 2” in diameter (50mm) and about ¼” thick (6mm) they are relatively small for what they do. Firstly, they monitor the heart beat and adjust it when necessary (in my case, 98% of the time). Secondly, they record what’s happening so that a technician can interrogate it on a 6-monthly basis non-invasively; i.e a metal object rather like a ring magnet is placed over the pacemaker and a computer can then access the data. Lastly, it has a lifespan of about 10 years which is when the battery runs out. At that point the pacemaker can be exchanged simply by removing the original unit and plugging the original leads into the new unit, known in many hospitals as a ‘box change’. There are some that have an inbuilt defibrillator also known as an ICD (Implantable Cardioverter Defibrillator)! Unfortunately, these days some ICDs also have a pacing capability which is very confusing for many people.


Now I have to be careful that I do not expose myself to strong magnetic fields. Although the well known shop door detectors are perfectly safe, I have to ensure I don’t hang about at airport security arches, although it is perfectly safe to walk straight through. I must also refrain from electric arc welding or being in the vicinity of someone using this equipment. As I have been involved in engineering all my working life this was of some relevance.


I also needed to inform my car insurance company and the Driver Vehicle Licencing Authority of my condition but, fortunately, they sent my licence back with no restrictions. Each case is reviewed on its merits.


One of the reasons for fitting the pacemaker was to try to overcome some fainting spells, mainly because they were very infrequent (once every 3 – 6 months) not necessarily after any particular activity (eating a large meal, going for a walk, brushing my teeth, etc.) and of very short duration (2-3 seconds). However, they were worrying not least because they were an unknown. So far it seems to have had little effect. I am pleased to report that I have not had a fainting spell now since September, 2003.


Eventually the third wire was successfully inserted and that’s really made a difference. I’m nowhere near as breathless when I climb stairs, I can walk comfortably for over a mile and I don’t wake up at night breathless either. In a nutshell, I was back to where I was which is fantastic. In July, 2004 my sister and I drove Route 66 in the States. We hired a car in LA and drove East along 66 getting as far as Groom in Texas, which is just a little short of Oklahoma City and just over half way to Chicago. The plan was then to dash back along the Interstate but, quite honestly, we preferred the quiet of 66 so simply retraced our outward journey. Great fun! So much fun that in March, 2006 I completed a trans-America road trip from New York to Los Angeles via Chicago, which meant I was able to drive the whole of Route 66.


I mention this as an example that a cardiomyopathy diagnosis is NOT the end of enjoying life. You must, of course, listen to your health professionals, take your medication and, above all, listen to your body. However, challenge your body and push it to its limit but know what that limit is.

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