I never thought I would be writing this post, especially after recent events that left me feeling as though I didn’t have much time left. As I mentioned in previous blogs, one of the pacemaker leads wasn’t functioning at full capacity and when the lead was tweaked to increase its voltage it caused a problem because the pacemaker picked up the wrong electrical emissions from each heartbeat and applied the wrong pacing therapy. That wasn’t anybody’s fault; the technicians did say there was a possibility that altering the lead could have that unwanted effect. After that was done I gradually felt worse and kidney function also suffered. I had to take extra of the diuretics just to keep stable with fluid retention. Kidney function GFR dropped from 31% to 25%.
After the lead was altered again, I noticed an immediate improvement. I was stronger, had more energy, and could manage on less of the diuretic. The consultant referred me to have a new echocardiogram because the last one I had was in January 2017 when I was diagnosed – I had a quick echocardiogram in May 2017, when the cardiologist treating me then said my heart was ‘struggling’ and he implanted the pacemaker three weeks later. I had no report for that echocardiogram so I don’t know what it showed. I assumed I wasn’t told because they didn’t want to scare me.
Imagine my surprise when I had the results of the latest echocardiogram! It’s in the photo – EF has increased from 10% at the time of diagnosis to 46-55% now. It took my breath away. I’d read so many stories of people improving from low EF factors and I thought it wouldn’t happen to me. I really didn’t think I would be joining the success stories. Obviously I still have heart failure, but it’s now classed as mild and the outlook has suddenly lifted from one of gloom to one of hope that I’ll live a bit longer than I thought. Others have quoted years, some as long as 8-15 years after initial diagnosis.
So how come it went up so quickly? The answer is it probably didn’t. I think the pacemaker has had the strongest effect, since I have hardly any palpitations now after having many of them each day for some years. I was always told that the Left Bundle Branch Block, a fault with the nerve signals going to the heart, was insignificant. I had many 24-hour monitor tests and at one time was even told I was making a fuss over nothing when I said the palpitations were increasing from the initial one per week to one per day, to more than one per day, to several per day. That happened over a three year time period and I think my heart was getting worse the whole time. I recall one hospital doctor telling me ‘I’m sorry to say this, but there is something wrong with your heart and we don’t know what it is.’ Maybe people should pay more attention to LBBB because when it’s increasing like that I don’t think it’s so benign.
All the tests I had prior to 2017 concentrated on the electrical signals and the performance of the coronary arteries, and when all the tests showed nothing wrong, I was discharged from the cardiology outpatient department. For three years from 2013-2016 I gradually got worse, having insufficient energy to do normal tasks, increasing breathlessness on walking or doing anything, and yet I was still told there was nothing wrong because nothing showed up on the ECGs. When my lower legs began to swell I was told it was minimal and nothing to worry about, probably due to age. When I developed severe breathlessness after a bout of flu in 2016, it was put down to asthma and cat allergy, and as it turned out I had neither. Even when I called an ambulance because I couldn’t breathe unless I was upright, it was still treated as non-urgent and an asthma attack because nothing showed up on the ECG. So it was a great shock to go to hospital and be told five hours later that I had severe heart failure.
It’s now another shock, but a thrilling one, to be told my EF is at the rate of near normal and my heart is ‘looking good.’ So I think the improvement was going on all the time but because of the low functioning of one lead and the subsequent side effect cause by the first alteration, I didn’t feel as though I was getting anywhere. The pacemaker, the drugs and the wonderful heart team nurses looking after me in both Shrewsbury and Weston-super-Mare, have helped to make me feel as though there is a better future than I thought. So for anybody in a similar position as I was when first diagnosed, I would say don’t give up hope because modern medical technology has improved vastly and more can be done for heart failure patients now than the internet would have you believe. It can’t be cured, as in returning to a normal heart in every way, but it can be improved and my story, and that of many others, shows this.
I’ll continue with the blog posts because there are still changes going on in the way heart failure patients are treated, and my personal story isn’t over yet.