“Blimey, Kathryn. I must really be out of condition”.
I had just returned home from work on my old style racing bike. Riding to work on a bright summer’s morning was great as it was almost all down hill and what wasn’t downhill was flat. Not so pleasant coming back! Riding up Cliff Hill was the cracker but I pushed myself on thinking, ‘No pain, no gain’ but the pain in my chest was quite intense and I did wonder if I was overdoing it.
Then the waking up in the middle of the night, taking a few deep breaths and going back to sleep started. Being a pretty switched on sort of a guy I thought, ‘This can’t be right. Better get myself checked out.’ 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 (ECG) 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 drugs.
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 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 is made just below the left collar bone if your right-handed, or the right collar bone if your left-handed, which is where the pacemaker sits. 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 establish 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!
Modern pacemakers are terrific pieces of kit. Being only about 2” in diameter and about ¼” thick they are relatively small for what they do. Firstly, they monitor the heart beat and adjust it when necessary. 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. There are some that have an inbuilt defibrillator also known as an ICD (Implantable Cardioverter Defibrillator)! These days ICDs also have a pacing capability which can be 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 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 insurance company and the Driver Vehicle Licencing Authority of my condition, but fortunately cardiomyopathy, certainly in its early stages, is not grounds for stopping a person from driving. As I was also experiencing some fainting spells I was quite surprised at this decision, but pleased.
One of the reasons for fitting the pacemaker was to try to overcome these 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 some effect. I am pleased to report that I have not had a fainting spell now since September, 2003.
So what’s the normal life expectancy of people with this condition? I have looked on the internet and found 6 American institutions that publish information on this subject. I appreciate this is not always a good thing to do because every case is different and many people have difficulty coming to terms with their situation. Personally, I like to know the facts. This is my body and, whilst I am no doctor or specialist consultant, I’m reasonably intelligent and can understand facts. In all fairness, it must be difficult for a doctor on the basis of a few, 15 minute consultations to assess whether a patient that has a potentially life threatening disease has the capacity to both understand the facts and deal with the consequences.
The results of my investigations revealed that between 50% and 70% of patients could expect to die within 5 years of diagnosis and a further 25% within 10 years. Not exactly a fatal disease but close. A transplant was not normally considered unless the patient had not yet reached the age of 60 and had a life expectancy of less than 2 years. When challenged, these facts were confirmed by my consultant. I must emphasise though, that this data was accurate in 2003. It is not accurate today (2014) because of the improvements of medical understanding, medication and technology. Today, most people diagnosed with cardiomyopathy can expect to live a normal life span.
We had a particularly scary moment just before Christmas, 2010. As a patient with a heart condition I am officially recognised as ‘at risk’ and therefore, entitled to an anti-flu jab each autumn. The trouble with this plan is that the vaccine has to be prepared many months before being administered and any new strains of virus tend to surface round about September each year. Therefore, the vaccine is always a year behind the virus it’s supposed to protect against. Better than nothing, of course.
Guess what? Yes, I caught the latest version and because of my ‘at risk’ status, my doctor prescribed a strong new drug which is rather expensive (thank God for the National Health Service!) I took the first dose on a Tuesday, and within 24 hours the symptoms were gone. I continued with the course of treatment for the prescribed 5 days, but by Thursday I felt so good, I decided to have a shave and a shower.
Not a good decision! I completed the shave, just, but was so breathless and feeling faint I sat on the edge of the bath to recover. After about 10 minutes I thought, ‘This isn’t good. If I collapse here no-one’s going to find me for about 6 hours.’ My wife was at work as a special needs assistant at the local school and she always locks the front door. I managed to put on my dressing gown, went down stairs and unlocked the front door then sat on the sofa in the lounge for another 5 minutes to see if my condition improved. It didn’t so I called 999. When the paramedics arrived they tried to take my pulse in the usual way but couldn’t find it. When they wired me up to the ECG machine my blood pressure was through the floor, 90 over 40. My doctor said to me later that, at that pressure, if it had been him he would have been unconscious. I was still with it enough to tell the paramedics where my medication was.
They sent for the ambulance and I spent the next 4 hours in accident and emergency at our local hospital. They put me on some kind of drip, but apart from that it was simply a case of rest and observation until I was fit enough to go home. They did all kinds of tests, of course, in the interim to make sure there was nothing else they should be doing for me, but basically, it was just rest. It scared me, I can tell you, and it certainly scared my wife. I couldn’t move for myself for the next 3 weeks. I was waited on hand and foot but I’m pleased to say, that’s worn off and we’re back to normal now. The doctors reckon I simply got up too soon after the influenza bout because the new drug was masking my symptoms, so that explained that particular fainting incident.
So, what happens now? Well, we’ve recovered from our scare and we’ve had a few tears. 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 am 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’m planning on driving 66 again in 2015 with my son doing the driving.
As mentioned earlier, I was first diagnosed in 2000 and, quite honestly, had little in the way of support from my local health professionals, to the extent that I wasn’t told that I needed to contact the DVLA or stay away from equipment giving off high degrees of electro-magnetic force such as arc welding machines until 6 months after my first pacemaker was fitted. I was told by my pacing technician when I went for my first calibration visit. Not good as I was an engineer and worked on a site where electric arc welding equipment was being used every day!
I needed to find out the facts about this mysterious disease that no-one had ever heard of so I attended my local support group for those with heart disease. Waste of time! It was a social club supporting those who, mainly, were recovering from a heart attack. Eventually I found the Cardiomyopathy Association and a wonderful lady, Sarah Dennis, who helped me set up the East Anglia Cardiomyopathy Support Group and supplied me with leaflets and CDs that gave me the facts about cardiomyopathy. Just what I needed. We held meetings every 3 – 4 months in the lecture theatre of the Norwich Hospital with an audience of about 70 on every occasion. The support group was still going strong 5 years later when I took early retirement and moved to Portsmouth.
Guess what? No support group in the Portsmouth area. Actually, there was one based in Basingstoke being run by a chap that tried to cover the whole of Hampshire and the Isle of Wight. I contacted Sarah again and she put me in touch with another patient in Southampton and after discussing our ideas with the gentleman who ran the other group, we agreed to take on Southern Hampshire and the Isle of Wight and he would concentrate more on Northern Hampshire and Berkshire. This has worked well. We hold a major event once a year in Portsmouth and one in Southampton and hope to organise one on the Isle of Wight this summer. The two we have held in Portsmouth so far have drawn audiences of over 150, although Southampton has not been so well supported. We’ll keep working at it though.
Also, through the CMA, I volunteered 3 years ago to take part in stem cell trials to develop a therapy for cardiomyopathy using a patient’s own stem cells. This entailed spending a week in a London hospital, having stem cells removed from a cavity in my pelvis and then having 10ml of fluid injected directly into the heart muscle using the angiogram procedure. The volunteers were divided into two groups. One group would have the refined stem cell fluid injected and the other group would have a placebo fluid injected. We found out last year who was in which group and I was in the placebo group. On 3rd July this year a meeting has been called at the London hospital to unveil the results of the trial. I just hope it is a positive result and we are further along the road to finding a cure for this disease.
Unfortunately, in August 2016 I ended up in ER in Leadville, Colorado not being able to breathe. They put it down to altitude sickness but, on my return to the UK and after tests, it was discovered that, amongst other things, my EF had dropped from 56% to 34% so they put me on ivabradine. After 18 months there has been no change in my EF which is rather disappointing although I generally feel relatively fine. I still getshort of breath after a flight of stairs but so quite so badly. My fatigue is much better and I find I don't need to sleep in the afternoon quite so often. Unfortunately gardening is almost impossible other than a bit of weeding in short bursts. Other than that I do what I can and listen to what my body is telling me.
In regards to the stem cell trial, I never did get an update. None of the information I was expecting ever surfaced. My cardiologist was supposed to be kept informed as well but he never received anything, ever. Not very satisfactory at all.