I have a heart condition

I can’t imagine anyone finds it easy being diagnosed with a heart condition. What made it even more difficult for me, was being tested two weeks after my brother had collapsed and subsequently died from a cardiac arrest at the age of 44. I hadn’t even begun to heal from the trauma of seeing him wired up to machines in ICU, when I started to be wired up to machines myself. I cried my way through every appointment, every test, because I couldn’t help wishing he was still here, that he was being tested, that he could have been saved.

If only we had known

My brother contacted me to say he was feeling unwell, tired and had a numb feeling all down his left side. The doctor wasn’t too concerned but was referring him to a cardiologist to be sure. Just a few day later I got the results of a chest x-ray, after suffering really bad asthma attacks and chest infections. The x-ray showed my heart was enlarged and I needed to have an ECG,

We found it quite amusing, neither of us remotely concerned that there was actually anything wrong with how hearts, little did we know. My brother was seen fairly quickly, within two weeks. He assured me nothing was wrong, but the cardiologist would arrange an angiogram and echo to be sure all was well with his heart and arteries. I meanwhile was waiting for another doctor’s appointment for an ECG.

Unfortunately, my brother collapsed due to cardiac arrest- ventricular fibrillation – just three weeks later, before he ever had further tests. Please see the post I lost my brother.

The tests

Just ten days after my brother died, I was lying on the doctors table, wired up for my ECG. The nurse assured me it was fine and asked if I could come back the next day and see the doctor. The next day the doctor explained my ECG was abnormal, she referred me to cardiology. Luckily for me, my employer pays for private healthcare. I saw the cardiologist the next day.

The cardiologist explained I had fluid around my heart, swollen feet and ankles possibly due to my heart, I also had several issues with the ECG, her prime concern was T-Wave inversion. I would need an Echocardiogram, Angiogram, 24-hour Holter monitor and 24-hour Blood Pressure monitor. I had never been so terrified in my life. The tests were all the same week as my brother’s funeral, I was a total emotional wreak,

The tests I had didn’t show any blockages in my arteries or issues with my heart. I was referred to an electrophysiologist to investigate any inherited or electrical abnormalities with my heart. He wasn’t too concerned but said he would request a cardiac MRI and also, I would need to wear a heart monitor for two weeks, to ensure I wasn’t having any dangerous arrythmias.

The Post-mortem

The initial post-mortem carried out on my brother was inconclusive. Similar to the tests conducted in ICU, no cause of my brothers’ cardiac arrest could be found. Subsequently, his heart was sent to a specialist for further investigation. Despite not knowing what had cause my brothers’ death,  but I was convinced I had it. The day after my appointment with the electrophysiologist, I received the news that the specialist had discovered my brother had a rare hereditary heart condition.

The diagnosis

Based on the cause of my brothers’ death, the cardiac MRI was brought forward, not a pleasant experience. When I initially went into the scanner, the close proximity to the walls of the machine and the noise caused me to panic. I thought I was going to ask them to get me out. It takes an hour and a half to complete the scan.

An hour after the MRI, the electrophysiologist told me I had scarring on my heart and that I had the same heart condition as my brother. He assured me my heart wasn’t as damaged and that I would be fine, I was not at risk of sudden cardiac death. However, this turned out not to be the case. A week later the results of the extended heart monitor showed I was having dangerous ventricular arrythmias and I was at risk of a cardiac arrest.

The consultant suggested the safest thing would be to fit me with with an ICD (Implantable cardioverter defibrillator). Should my heart go into a dangerous rhythm it would deliver small electrical shocks to get it back in rhythm. Should the arrythmia continue it would deliver a big shock to get my heart back into rhythm. It would be my protector and save me from cardiac arrest.

I had the device fitted a week later. It all felt so wrong, why I hadn’t I died and then my brother could have been saved. How can I cope knowing I have a device that will save my life, all because my brother had died?

A year on, I still don’t think I have come to terms with losing my brother or having a heart condition. There has just been too much to get my head around. I feel guilty every single day. I miss him every single day.

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