Three young people living with heart disease share how they are dealing with COVID-19

Rachel

Tell us a little about your heart condition.

I had my fourth and fifth open heart surgeries in 2015 and 2016. I had the first three open heart surgeries as a child. In 2015 I had a maze procedure, pulmonary valve replace and tricuspid valve repair. The surgery was successful but I did not recover very well and had extensive issues with oedema and with my breathing. In 2016 I had a pericardiectomy and tricuspid valve replaced. Again, surgery was successful but it left me with a few long-term issues, including right side heart failure and lung disease.

How are you feeling at the moment at these uncertain times, in relation to COVID-19?

I have definitely had some days where my anxiety was quite high and keeping a regular schedule was a struggle. I try to keep a loose schedule to keep on top of my mental health so any extra anxiety is something that I need to monitor. I am mostly feeling like I am coping better than most. I spend a lot of time at home since I stopped working and was classified as having a ‘total and permanent disability’. I do leave the house to attend doctors’ appointments but they are slowly becoming phone appointments so that will possibly make me feel a bit more isolated as time goes by.

You have decided to practise self-isolation – how did you come to that decision?

I decided to self-isolate quite early on, having both a serious heart condition as well as lung issues. I was concerned that the media was reporting that heart and lung disease were two of the comorbidities of people who were struggling to recover and were dying from COVID-19. Although I am young, I am also very susceptible to catching colds and viruses – my immune system is weakened. I also had to consider my husband bringing home the virus, so we decided that I would stay home as much as possible. Each time I needed to leave the house I would consider the risk factors (space, number of people, how long I would be exposed to other people, any extra precautions I could take).

For example, I went to two dance classes last week. In both classes there were only five or six people in the class, plenty of space, and the benefits of me getting that exercise for my heart and my mental health made the risk worth taking. I don’t think that any of my dance classes will be proceeding for at least a few weeks, which is disappointing, but I have decided to follow the self-isolation rules that have been set by the Victorian Government, which are a little more strict than the Prime Minister is recommending.

What precautions are you taking for your heart health?

At the moment I am making sure to regularly wash my hands well. I also use hand sanitiser whenever I see it out in public and carry a small bottle in my handbag. I am also trying to be super strict about having my medication and meals at the right time. I would like to ensure that if I did catch COVID-19 that I will have a chance to fight it off by staying as healthy as I can possibly be. I am checking my weight and fluid intake to keep my heart working smoothly. I am also checking in with myself regularly with any sign of feeling unwell.I maintain a close relationship with my GP. We had a telephone appointment the other day and we went through my current activities (dance class, dog walks) and spoke about avoiding being in crowds. She’s very supportive and I feel like I could call and talk to her (within reason) about any concerns I have. I am monitoring my medication and making sure I have all I need – without hoarding medication that other people may need. I do have some anxiety about medication supply over a longer period of time but I am keeping an eye on my own stock.

Words of wisdom to fellow heart patients/warriors?

I have been sticking to reliable media sources for news. I try and just check once or twice a day. I do use social media a lot but I find my anxiety gets quite bad if I don’t take regular breaks. So I try and take a break to read, nap, craft and play video games. Anything to get out of the social media scrolling zone. Take some time out from the constant chatter about COVID-19. If anything important is announced you’ll find out soon enough. If you can manage to go outdoors, even just around the block, fresh air is very good for you Just avoid people as much as possible! Lastly, look after yourself. Get lots of sleep and try to avoid situations that might expose you to the virus. If you are able to help others without compromising your own health, do so, but look after yourself and the people you live with first.

Angela

Tell us a little about your heart condition.

I was diagnosed with dilated cardiomyopathy nearly two years ago, at the age of 38. It came as a shock as there is no history of it in my family and after all the diagnostic tests, the specialists are unsure how I developed the condition. I was admitted to hospital for two weeks and recovered at home, getting used to my new regime of medication and fluid control. It's a lifelong condition, so anything I can do now to support my wellbeing is top of mind.

How are you feeling at the moment at these uncertain times, in relation to COVID-19?

At first, like many, I watched the news of what was happening in China and thought it wasn't going to impact us here in Australia. But as the weeks went by, I began to realise it was likely to reach our shores at some point. I kept up my daily routine and checked in regularly on the World Health Organisation (WHO) website – I knew that getting the normal flu or pneumonia was very risky for people like me with underlying health or heart conditions, so I was aware but not alarmed.

You have decided to practise self-isolation – how did you come to that decision? 

I work in an office for a large business, with offices around the world, so colleagues regularly travel. Our organisation was very quick to communicate the rules of social distancing, hygiene etc. As the rate of COVID-19 picked up pace, I started to think about how I could minimise my own risk of being exposed. Once the WHO declared this a pandemic and America closed their borders to Europe, that was my light-bulb moment. I considered my options, spoke to my friends and family and decided to work from home and self-isolate for as long as needed.

What precautions are you taking for your heart health? 

Since making that decision, my workplace this week elected to have everyone work from home. And my husband’s company was the same, so I was three or four days ahead of the broader community, so that reassured me that I had made the right decision and wasn't over-reacting. I'm staying home, have cancelled my hairdressing appointment and massage, and I’m keeping away from large crowds of people. This means shopping at my local supermarket and popping in for a takeaway coffee at my local cafe (rather than sitting in). Other than that, I'm doing what I normally do – taking my medication, getting enough sleep, walks to the park with my dog and using online delivery services as much as possible. Keeping personal hygiene top of mind and keeping myself informed through reputable sources like the Heart Foundation and Victor Chang Institute.

Words of wisdom to fellow heart patients/warriors? 

We're all in this together – as a community, as heart patients, as humans. Everyone is processing the scale of this situation in their own way, which changes on a daily or hourly basis. Rightly so, there are others in our community who are more fearful or anxious than others. I'm also a passionate supporter of talking about and investing in our own mental health – and at a time like this, as humans, our need for social interaction. Keep connecting with those around you. We're so lucky to live in an age where we have mobile phones, social media and video calls!

Lea

Tell us a little about your heart condition.

I was diagnosed with several holes in my heart (atrial septal defect) when I was 24 years old and underwent open heart surgery at 25. The surgery caused recurrent pericarditis, a heart condition that I am still managing 11 months after my surgery via a daily cocktail of medication. 

How are you feeling at the moment at these uncertain times, in relation to COVID-19?

I was quite relaxed, actually. I think that having had heart surgery and the complications in the last year, the adversity and uncertainty and change of plans has made me more resilient, and I try not to worry about things I can't control. I only began to stress when I couldn't do my normal shop anymore due to all the panic buying! Plus, due to government restrictions, I can't buy medication as I normally would, which means I need to go to the pharmacy more frequently (quite against the intent of self-isolation, particularly for immune-compromised groups!) so I'm a bit worried that the supply might get even tighter. But overall I'm focusing on the things we still have, and finding creative ways to do the activities that give value in our lives, and that gives me enough control and certainty for the moment. 

You have decided to practise self-isolation – how did you come to your decision?

I am working remotely as of today. I live alone and thought of going back to QLD to be with my family, for support during these times, but the borders are closing so I'll be living it up in Canberra. I am actually lucky because, as an introvert, a lot of the isolation recommendations are things I already do (I am not one for crowds!) I have stocked up on books and will be writing my own book and chatting to friends and family around the world who are similarly locked down; even in times of adversity, life goes on, and if we find moments of joy in the everyday, then we can get through this. Nothing lasts forever even if it feels like it will at the time (just like the pain and rehab after heart surgery). 

What precautions are you taking for your heart health?

I've been following my cardiologist's instructions not to get sick, tired or stressed for the last six months to manage my pericarditis so it's largely an extension of this. Obsessive hand washing, drinking lots of water, all the fruit and veg, trying to get my 10,000 steps a day, avoiding anyone who looks or sounds sick. As strict and unkind as it sounds, I am taking no chances with my heart or my health. A few weeks or months of discipline will hopefully deliver a better outcome for everyone!

Words of wisdom to fellow heart patients/warriors?

Draw strength from your heart journey to get you through this. Our experiences make us stronger and better able to cope with uncertainty, and be more in tune with our bodies and aware of our mortality. 

Rachel, Angela and Lea are part of our Supporting Young Hearts program that supports younger people, aged 18 to 40 years, who are living with a heart condition or recovering from heart surgery. If you would like to connect with others and share your heart story, join our Facebook group.