Nick's story

My journey into Dilated Cardiomyopathy (DCM) started late 2013. I was a generally healthy specimen and worked hard at my technical office based job. I started to feel as though I was suffering repeated flu for some days, but kept fighting it off. Ultimately I ended up being rushed to emergency department one evening, clearly very ill.

On admission my heart ejection factor was measured as 6%, kidneys were failing and every other organ was not far behind. My partner was informed another 6 hours and it would have been too late, and even at this point they did not know if I would survive. My local hospital did marvelously to stabilize me overnight. But it was clear I needed specialized support. The following afternoon I was flown by helicopter to St George Hospital in Sydney, and admitted to ICU. I spent one night in ICU, and was informed in the morning that I was their biggest success overnight. I was then moved to CCU, where I stayed for three weeks, whilst tests and medications and procedures were carried out. These included angiogram and cardio version.

Luckily due to my healthy diet, my arteries were clear, and not being a smoker or much of an alcohol drinker in recent years, the rest of my body was in good shape. This probably explains how I survived! During my stay in CCU I was informed it was likely I would need a heart transplant or at least an ICD. This was the biggest shock in my life so far, and I believed I would never work again or even have much of a life after discharge. My life was over. I then went about fighting back. My illness was caused by a virus attacking my heart and the MRI six weeks later did not raise much hope. But I was determined to get back and not feel sorry for myself.

On return to home I started almost immediately on light exercise of walking every day, after being visited by my local hospital cardio rehab nurse. After weeks of rehab, I started to work from home, slowly increasing my hours and then returning to work full time. So I concentrated on attending weekly rehab, and had my partner with me for every session bar one. This gave my partner the confidence I was not overdoing it, which I am known to do! It also gave me the confidence that she would point out if I did start overdoing it. It is very important to keep your family and friends in the loop when going through rehab, to avoid unfounded stresses. Believe me this journey is best described as a roller coaster ride emotionally and physically.

During this period my EF had gone from 6% to 26% on discharge, and then over next two years slow but sure improvement up to 50%+ now after nearly 4 years. I am on 4 different drugs and 2 supplements.

I have kept up my exercise regimen, but sometimes let work affect this. So my work is mentally tiring, and if I drive home after work and sit down, that is me done for the day. But if I turn left at the last roundabout and go to the swimming pool, and do a few lengths, my energy levels are reset back to normal and I become a useful member of the household again. Certainly if I let my exercise slip, my general look on life degenerates, and this can be self-destructive with increased depression and upset. I believe exercise is the key, as I have always been a positive thinker but some drugs can have a negative side effect on mood as I have found, and exercise will counteract this.

On my last exercise physiologist appointment, I was pushed hard, and was told I was probably fitter than most men of my age, which was good news. Needless to say the original talk of transplant and icd are a distant memory. If I ever catch up with my hospital cardiologist I will be asking him for the bottle of champagne he promised me if I got over 50%!

I can only talk about DCM due to viral attack. There is a life after such an event, and if you are willing to change bad habits, you can live an even better and healthier life than you were before. Everyday becomes a great day, however it may seem. I recognise I have been lucky, and maybe because I was reasonably healthy before the virus, and my heart must have been unbelievably strong before as I walked in to emergency department at 6% heart ejection fraction.

DCM does not have to be the end, but can be a new start, and I can guarantee it will refocus you on what is important in your life. Share with your nearest and dearest, and make the most of every day. I work full time and have a full life outside of work, snorkeling, scuba diving and sailing, to mention a few. As I mentioned earlier, this is a roller coaster of a ride but they generally come to a smooth stop if you are lucky.

Postal address: PO Box 2006, Surrey Hills,
Victoria 3127, Australia

36 091 171 470