‘I had to accept that the carer had become the cared for’

I am a 58-year-old woman living in Foxford, Co Mayo, and, five years ago, I started my journey with heart failure.

I have been very scared in recent months as I know that if I contracted Covid-19, the outcome would be catastrophic. I have already been in intensive care since the start of the pandemic with my heart failure – I was on a ventilator and dialysis and my family were told to prepare for the worst.

Thankfully, the skills of the staff at Mayo General Hospital intensive care unit, and God, saved me to fight another day.

It was a normal Monday morning in June 2016 when I got up to go to work – I was a nurse based in St Mary's hospital, Castlebar. I had been feeling a little unwell over the weekend. I took two paracetamols and went to work. I found it very difficult walking up the stairs, was feeling breathless and light-headed and felt muscle-type pains in my arms and across my shoulder blade. I thought it was the onset of flu. I continued to go to work for the next three days until Thursday, when my line manager said "You are looking very pale" and insisted that I go to hospital to have bloods taken. I walked over, had the bloods taken and then went home to wait for the results.

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I had taken an annual leave day on the Friday so was at home, completely unaware of the panic that was unfolding when the results came back. My husband phoned me, telling me that my GP had phoned him, the hospital had been trying to contact me and that I needed to speak with the hospital consultant immediately.

Oblivious

I arrived at Mayo general hospital, oblivious to what all the fuss was about. I was taken directly into casualty, cannulated and brought up directly to ICU – it appeared my troponin indicated that I had a very large heart attack.

I was stabilised in ICU for a few days, but the muscle-type pains did not seem to settle, so the decision was taken to transfer me to University Hospital Galway. I was taken down for an angiogram that night which confirmed I had blocked coronary arteries that would need attention. The cardiac surgeon spoke to me the next day and said because of the condition of my vessels, he could not offer me bypass surgery and that the only option I had was stenting. Thankfully, the amazing team in Galway took that risk and I became the proud owner of a number of stents and a full metal jacket: this is where they continually stent the artery as one stent is not sufficient. I had the procedure stopped because I did not respond very well the first time and was rested and brought down the following week to finish the procedure.

I was advised to have a defibrillator fitted as I was at a higher risk of having a sudden cardiac arrest

I had the most amazing team of cardiologists, nurses, cardiac physiologists and pharmacists that looked after me, but was devastated when I was told that because of what had happened, the left ventricle in my heart had been badly damaged. I was told it wasn’t working very well and I now had heart failure.

Defibrillator

I was advised to have a defibrillator fitted as the ejection fraction, which is the amount of oxygen that can be circulated around the body by the heart, was reduced and I was at a higher risk of having a sudden cardiac arrest. My heart sank – what did that mean and would I ever be able to return to my normal life?

The early days of living with heart failure were very strange for me. I was getting episodes of shortness of breath which impeded on every part of my activities of daily living. I felt an overwhelming feeling of loss – I was too young not to return to work.

Nursing was my livelihood, but also the job I loved.

I was a mum and grandmother; how could I look after them? Why did they have to look after me? Who was going to pay the mortgage? Why did it happen to me? It was at this point the anger set in. There was no one to talk to – I needed help with signposting to the right services. What did I really know about heart failure and what did the medical professionals know that would help me come to terms with this prognosis?

Very harrowing time

In August 2019, my husband Keith died suddenly. It devastated my life all over again. I met him on my 18th birthday and we had been married for 34 years. The support I received from the Irish Heart Foundation’s team and Heart Support Network was invaluable to me at this very harrowing time.

My family became my carers and I had to accept that the carer had become the cared for. But I was one of the lucky ones – I have an amazing network of extended family who are always there.

I weigh myself daily and if my weight is up by 2kgs, I normally get in touch with the heart failure nurse

After 10 months, I was directed to the heart failure nurse at my local hospital, who was the most amazing person and helped me make sense of what was happening.

It was at this point that I started to realise that although it is a condition for which there is no cure, and will probably end my life some day, there were things I could do to take back control and make the best of what I have.

I weigh myself daily and if my weight is up by 2kgs, I normally get in touch with the heart failure nurse. The heart failure specialist in Galway guides me as to what is the correct amount of diuretics to take. Having a specialist consultant and a nurse in heart failure who treat me as a partner in this process has taken my care to another level.

Approachable doctor

My GP is also a very important part of the care team and I am thankful to have such a progressive, approachable doctor who really makes you feel listened to.

I get swollen feet and ankles and when the pigs’ trotters (as I call them) start forming, I know I am getting into trouble. The fluid builds up in your lungs and your abdomen and you can become congested, that’s when I normally have to be hospitalised and have IV diuretics to help get rid of the fluid.

The fatigue that happens on a daily basis can be quite debilitating and taking diuretics changes your ability to go places. You end up planning your route around toilets. When the shortness of breath occurs, it can be quite frightening.

At home I have a monitor that records what is happening with the heart through the defibrillator. They can tell me when any abnormal rhythm occurs. I do get the feeling of what seems to be a beat in my throat when I am congested.

I also now have chronic renal failure, which impacts on my diuretic intake. I have frequent blood tests to ensure that my creatinine does not go too high.

Support

I am lucky to have home support that helps with my day-to-day living. Without that, I would be unable to function as well as I currently do. I became a member of the Irish Heart Foundation’s Heart Failure Patient Panel, and now give peer-to-peer support to others who are going through a similar experience.

Heart failure is a syndrome that impacts on every part of your life. It affects your physical, psychological, social, financial and family functioning. It can be a scary diagnosis – you have good days and bad days. The main thing I have found is to keep a positive attitude, find new ways to do things, give yourself time. It has to become your new best friend.

Address any issues you have, play your part in the management of your heart failure and don’t sweat the small stuff.

– Heart Failure Awareness Week runs from May 10th-16th. If you are a heart failure patient and would like to access support tools such as counselling, exercise classes or information sessions, sign up on the Irish Heart Foundation website.