Some congenital heart patients, often with more complex types of congenital heart disease have a greater chance of developing a heart failure. Although the term ‘heart failure’ sounds grave, many patients after they are started on medical treatment live very full and active lives.
Why do I have heart failure?
There are many different causes of heart failure but the three main causes are – 1) the pumping ability of the heart is reduced; 2) there is a problem with one or more of the heart valves i.e they are too leaky or too narrow or 3) there may restriction in with how easily the heart fills with blood. Sometimes, there can be a combination of these problems.
What symptoms would I expect to have if I have heart failure?
Irrespective of the cause, the presenting symptoms and signs of heart failure are often very similar. As a patient you may feel more breathless on exercise, feel that you have swelling of the abdomen or your legs have become more swollen. You can feel more breathless lying flat, which improves with being propped up in bed. Sometimes, you can lose your appetite.
What can I do to help?
1. Monitor your daily fluid intake. Sometimes we advise patients not to drink more than 1.5-2.0L of fluid per day. This is the total combined fluid intake whether it is cups of tea or coffee, water or juices. Large changes in fluid intake can have a profound effect on your condition. The more fluid that you drink, the harder the kidneys have to work to get rid of that extra fluid.
2. Weight yourself. Sometimes we may ask you to weigh yourself each day and keep a log of this (include a sheet here for weight). If your weight increases by more than 2kg in a few days, this is likely to be excess fluid which means that you may need to control your fluid intake better or, you need a higher dose of diuretic tablet to keep the fluid down.
3. Avoid extra salt with meals. We always advise not to add extra salt to your diet since there is often enough in food anyhow.
4. Regular exercise. We appreciate that this can be difficult, particularly if you become breathless because of your heart failure. There is very good evidence to show that some form of regular exercise has a positive health benefits for patients with heart failure. We are happy to discuss with you some exercises which you could try to help. Something is better than nothing!
5. Maintaining a healthy weight. It is very important to try to maintain a healthy weight (ideally BMI 20-25). Being overweight or obese can worsen symptoms of heart failure and sometimes can be linked to causing heart failure. Weight loss should achieved through dietary change i.e. healthy eating, rather than large amounts of strenuous exercise – for most people, particularly those with heart failure, this is unachievable anyway. We can direct you to some useful resources in your local area to help you with this.
6. Restricting alcohol consumption. We advise some patients with severe heart failure to avoid alcohol altogether. Rarely, excessive alcohol consumption can cause weakening of the heart muscle and be the direct cause of heart failure. In patients with less severe forms of heart failure, a small regular amount of alcohol will do little harm as long as this is included in the the daily fluid intake
7. Stop smoking. Smoking has a wide range of negative effects on the general circulation and the heart. Over time, it causes damage to the lungs which may also result in progressive breathlessness. Some patients who have severe heart failure and who may require a heart or heart/lung transplant will be ineligible if they cannot stop smoking.
8. Take your medicines regularly. We appreciate that taking large amounts of medication on a daily basis requires a lot of commitment. Missing a dose of your medication infrequently will be unlikely to cause you harm. However, if you regularly miss your medicines, this makes it much more likely that you will start to regain fluid, develop heart rhythm disturbances and you will not have the best opportunity for your heart to respond to the medication.
Medical and Device treatment
Over the last five decades, there has been an enormous amount of effort to discover new medical treatments for acute and chronic heart failure. Hundreds of thousands of patients have been enrolled in clinical trials to test both drugs and devices and there continues to be exciting trials underway which offer the hope of new treatments. As a result of this work, many patients with heart failure now live longer and have a better quality of life.
Patients with congenital heart disease and heart failure are unique. Far fewer patients with congenital heart disease have been enrolled in clinical trials.
We always endeavour to manage patients according to the best evidence and consensus based therapies for their condition.
When we see you in clinic we periodically request a number of tests to assess your condition more fully:
1. Cardiopulmonary exercise test – We exercise you on a treadmill or on a static bike. this can be used to assess the severity of your condition compared to other similar age and sex matched patients. We also use it to compare how you are over time – whether your exercise tolerance is stable, getting better or getting worse
2. Blood tests – Sometimes we make measurements of kidney function which can be affected by some of the medicines we prescribe to treat heart failure. We sometimes assess a variety of other blood tests. We sometimes measure NTproBNP which can give a further assessment of heart function over time.
3. Cardiac MRI scan – This is complementary to your echo scan which we perform in clinic. The MRI scan can give very accurate information in relation to the size and function of the heart plus any scarring of the heart tissue. We can assess valve function accurately, obstruction to flow and any leaks.
Advanced heart failure therapies – Transplantation and ventricular assist devices
If all available treatments have been exhausted and if your quality of life is poor or deteriorating despite this, we will consider referring you for one of these advanced heart failure therapies.
After comprehensive discussion with you, we would refer you for assessment at one of our local heart transplant centres which are based in Newcastle, Papworth, Birmingham and Wythenshaw. There are many issues to consider in terms of suitability for transplantation which cannot be covered here. In all cases, the risks of these advanced therapies must be outweighed by the potential benefits but we will discuss these with you before referral.