Living With Heart Failure blog 1

human-heart-diagram-in-bodyLiving With Heart Failure blog 1


The purpose of this blog is to relay one person’s experience of heart failure: what led up to it, the diagnosis, and treatment afterwards, warts and all. I have ‘severe’ heart failure, and this is my story. I may not write it as a continuous narrative from beginning to present and there may be some jumping around. I want to put this down somewhere because in the forums I’ve visited most of the people report heart failure of less severe diagnosis.


In January 2017 I was diagnosed as having an ejection fraction (EF) of 10%. The ejection fraction is the ability of the left ventricle, the main pumping chamber of the heart’s four chambers, to send blood around the body. Because the heart consists of four chambers the full percentage of its working capacity is divided equally into four parts, so full functioning for the left ventricle is at 50% -55% in normal, healthy people. That’s why I’m still alive with an EF of 10%, because it’s 10% out of 50%, not 100%. Slightly confusing at first for heart failure people because 10% sounds so awful.


As a result of weakness of the heart muscle, my heart is enlarged, called dilated cardiomyopathy. This happens because if there is any weakness in the heart muscle, not all of the blood is able to leave the heart and this causes a pooling effect in the left ventricle. The next beat pushes more blood out but not all of it, so some still remains, and so on. In order to accommodate all the extra blood, the heart enlarges, rather like an elastic vase filling up with water and bulging. So I have a bulging left ventricle and also enlargement of the left atrium, the smaller chamber positioned directly above the left ventricle.


The left ventricle and left atrium are responsible for pushing oxygenated blood from the heart out to the rest of the body through large arteries like the aorta. The right ventricle and right atrium are responsible for taking deoxygenated blood into the heart – first into the right atrium, then it passes to the right ventricle and is pumped to the lungs to be oxygenated then it returns to the left ventricle to be pumped out. When you think about it, it’s a beautiful system, the constant double circulation in our bodies that goes on with 60-80 beats per minute, something that is automatic and that we don’t even notice, until it goes wrong.


My heart failure started off quite slowly, and this is where the story may have some value to others because a lot of the signs and symptoms are obvious only in hindsight. If I put them down here, perhaps some other people might be forewarned to look further if they get similar symptoms.


The first thing that happened, definitely heart-related, was palpitations. These sudden thumps in the heart felt like an extra beat or a missing beat and back in 2006 I was getting them at a rate of about one per four weeks or so. I had 24-hour monitor tests and they never picked up anything because on the days the monitor was fitted I never got the palpitations. The palps, as I call them, came and went. By the late 2000s they had increased and I was finally diagnosed with a Left Bundle Branch Block, a long name for a simple process of problems with the nerve signals to the heart. A mismatch of signals means the heart doesn’t pump in synchronicity, and it misfires, basically. LBBB can be detected by heart electro-cardiogram (ECG) tests, as mine was. Right Bundle Branch Blocks are considered serious and some require surgical intervention. LBBBs are considered harmless. That’s where I differ from the medical advice, because I suspect that may not be true.


I was prescribed beta-blockers to regulate the heart rhythm better and because none of the heart tests showed up anything thought to be significant, I was told by a nurse ‘It’s nothing more than the heart rewiring itself. Just ignore it, it’s nothing.’ Which is what I did. I couldn’t take the beta-blockers regularly because unlike most people with heart problems I never had high blood pressure. Mine was completely normal. Beta-blockers lower blood pressure and taking them made me feel dizzy and faint. So I took them occasionally and ignored the problem despite the fact the palps were increasing over the years to one per fortnight, one per week, one per day, a few per day. Not all the time; it wasn’t a smooth increase but a process that occurred in steps.


The second symptom was a gradual increase in general fatigue when walking. I noticed many times that when walking with friends or family, especially up inclines, I would get breathless and my legs weakened, whereas my companions were fine. I put that down to long lasting effects from ME/CFS (Myalgic Encephalopathy/ Chronic Fatigue Syndrome) which had started in 1992 and disrupted my life since then. Likewise with an inner ear disorder which began in 1989 and is still a problem to this day.


The walking fatigue also increased over the years, so that from being able to walk a mile or two I was down to half a mile, then a quarter of a mile, then struggling up hills or with bags of shopping. I thought I was just unfit and needed more exercise. I went to the GP surgery many times. I did a treadmill test which had to be stopped fairly quickly because the LBBB kicked in and messed up all the readings being taken by the technicians.


Apart from one or two people, for the most part the medical staff weren’t interested in pursuing any lines of inquiry because their tests never showed anything seriously wrong.

To be continued….

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