Congenital Heart Disease and Exercise
My name is Elle; I was born in 1983 and have had 5 open-heart surgeries.
I’m sure that got your attention! - It usually works a treat at parties. It’s also a big crowd pleaser at the local country pub where I’ve been a proud member of the ‘zipper club’ since I was 3 days old.
Exercise and I have had a long term love-hate relationship for 35 years. In primary school I did little athletics, physical culture and hockey – I was terrible at all of them. In high school I did everything I could to get out of exercise. In my 20s I didn’t do any type of structured exercise, but I’m convinced that dancing the night away at a night club counted. Finally, in my 30s I started exercising!
I thought I’d put my decades of experience to good use and share some of my tips and tricks. I hope you find it useful.
Before you do any exercise speak to your cardiologist first. There are some exercises and sports that are not good for people with certain conditions or implants.
Yes, you probably should be exercising
Over the years I would do a burst of activity and then be absolutely stuffed, so assumed that I just wasn’t supposed to do exercise. How wrong I was. In the majority of cases, people with Congenital Heart Disease (CHD) can and should do exercise. Like the rest of the population, exercise has a positive impact on a lot of aspects of our life. I was just going about it the wrong way and needed to go slow and steady to build up my exercise tolerance. Check with your cardiologist about what you can do.
Enthusiasm levels v Energy levels
I’ve always struggled with having much higher enthusiasm levels than energy levels. Watch out world if they ever do match! Don’t punish yourself if you’re not at Olympic athlete – its ok (congratulations if you are though). We are built differently and should generally do exercise, but at our own pace. Finding your own pace is only something you can do through guided trials.
Avoid trainers with no training
Steer clear of ‘physical trainers’ and ‘gym assistants’ who are not university trained and accredited. CHD is unique, there is only 64,000 of us in Australia, so well-intentioned people may provide advice, but if they don’t have significant training and expertise I don’t trust them to look after me properly. In my 20s, I ended up very sick from one such well-intentioned trainer who didn’t have any knowledge of cardiac diseases, let alone CHD.
No puns or jokes here. Exercise physiologists are really great – they are university trained and accredited (Bingo!). For the past few years I’ve been seeing exercise physiologists who have specific training and experience in treating people with cardiac conditions and know when to push me more, and when to lay off a bit. They designed a program for me including resistance and cardiac training. I regularly see them to discuss how I’m going and they keep a nice thick folder of my condition, progress, and any issues. I’m the fittest I’ve ever been because of their guidance.
You may be eligible for subsidised exercise physiologist services through Medicare, your medical team (including GP) can point you in the right direction. Also, most private health funds provide a rebate when you see an exercise physiologist privately, you can call ahead and ask what the costs may be. You can speak to your cardiologist to help find an exercise physiologist, or find your own through Exercise & Sport Science Australia.
Know your condition
To help an exercise physiologist assess you and get you on the right track make sure you know what your full condition is and what medications you are on. I’m hopeless with the technicalities of my condition so my cardiologist has written me a letter that I’ve photocopied and just hand over to any specialists I meet. Even better, you could ask your cardiologist to write directly to the exercise physiologist and confer with them directly about your condition.
A few years ago a psychologist asked me to write down what I thought my warning signs were for hitting the wall. When I thought about it, I really knew what they were but often ignored them. They include things like lethargy, dehydration, slower metabolism, feeling colder, difficulty concentrating, cravings for sugary and fatty food, and lower tolerance levels. Now I have a clear idea of what my warning signs are, I keep a close eye on them and pull back on exercise so I don’t burn out or get sick. Have an honest think about what your warning signs are and monitor them closely so you can adjust your exercise if you notice them.
Media v reality
I’ve finally accepted that I can’t train like a Victoria’s Secret Model. But, I can train at HeartKid Elle’s pace and run my own race. The media is targeted at mainstream Australia, which we CHD kids often are not (hurrah). I’ve stopped reading magazine articles about exercise and fitness because in a lot of instances I just can’t do it and end up feeling crappy – like the water kid left on the sidelines. Run your own race.
Don’t stop it, swap it
While I may not be able to do some activities, I can modify them so I can still participate. In primary school I did little athletics and was terrible at it, I came last in every race. When I came second last it was like I had won gold and we went to MacDonald’s to celebrate (thanks family). That sport wasn’t really for me. I always loved the idea of cycling but struggled with it. So, I didn’t stop it, I swapped it for an electric bike which I love (enthusiasm and energy levels matched!). It’s taken me 35 years find what works, and I’m sure it will continue to evolve. Try out different things, don’t beat yourself up if you have to modify exercises, and don’t stop it, swap it.
Rest days are ok
It’s completely normal to have rest days where you don’t do any exercise. Even elite athletes have rest days. I find they help my muscles recover, and my energy levels rebound. I build rest days into my weekly routine and increase them if I start seeing my warning signs or have a busy work/social week.
Heart monitors are very helpful in getting real time information about what your heart is doing while you’re exercising. Ask your cardiologist and exercise physiologist what heart rate range you should aim for. I have a heart monitor strap and Apple Watch that I use during training. But, I have to say neither are 100% accurate. Separately, I’ve also set myself realistic step and movement goals so that I can actually achieve them most days and not feel like a failure for never achieving them.
Powders and Potions
The market for energy drinks, protein powders and supplements is scarily overwhelming – not to mention the eager salespeople. Unfortunately, some of them can have a negative impact on our unique hearts, which is the last thing we need when we’re trying to do the right thing by exercising. Have a chat to your Cardiologist or exercise physiologist before taking anything. I take some protein powder and hydrolytes, but stay away from energy drinks and supplements, and I avoid salespeople. You might also want to check out the HeartKids fact sheet on this here.
For richer, for poorer
No matter how rich or poor you are, there are exercises you can do. I started exercising with a cheap pair of runners and some weights at home. As I’ve built resilience and confidence I spend a bit more on gym classes, a bike, and apparel. It’s really up to you, but there is something for every budget.
Beating the mental block
Half my battle with exercise is psychological. Will I overdo it and run out of energy to do every day activities like work, study, or socialise? What if I can’t keep up and let the team down? Exercise has been a journey and now I’m trying to make it a habit for life. I often get confused as to what is ‘normal’ and what isn’t when it comes to my exercise tolerance. I have talked to my psychologist and exercise physiologist about my mental barriers to exercise and we have developed various ways to manage them. I now have a better understanding of what my body is capable of and how to cope when I start hitting the wall.
You can access free psychological services through Medicare, your medical team (including GP) can point you in the right direction. Some employers and education institutions also offer access to free psychological services.
Things to consider before and during exercise with CHD
- Check with your cardiologist first
- See an accredited exercise physiologist
- Know your condition so you can tell specialists and they can plan specifically for you
- Know your warning signs for hitting the wall so you can manage your pace
- Modify exercises to suit your level and build up (don’t stop it, swap it)
- Schedule rest days into your routine
- Record your progress with monitoring equipment if you can
- Be careful of energy drinks, powders and supplements – consult your medical team
- Set yourself up mentally to do exercise
- Game face – you’ve got this!
HeartKids will be publishing a Fact Sheet next month so stay tuned.
*Disclaimer – I don’t have any medical qualifications. This information is general and based on my experiences, therefore it doesn’t take into account your personal circumstances. Before taking action on any information, you should consider if it applies to you, and where appropriate consult with your medical team, family and friends. I’m also not an employee of Heart Kids Australia. They have just kindly agreed to post my blog for free.
About my heart condition: I was born with pulmonary atresia and intact septum with a leaky mitral valve. In English, this means that the connection from my heart to my lungs was “blocked” as one of the four normal heart valves never opened up – and one of the other heart valves was leaky. Also, one of the pumping chambers of the heart was much smaller than normal; the one under the missing valve. My surgeries have been to repair these problems.
Email me! – HeartKidElle@gmail.com and follow me on facebook and Instagram
Feel free to drop me a line. I’d love to hear:
other tips or tricks - I can always add to this,
questions I might be able to help with (noting I’m not a medical professional),
what your experiences have been, and
any ideas for other blogs I could do.