Living with changes in your heart condition

Hearing news that the changes in your health won’t get better, or that no further inventions can be made, is really tough. Even if this was something you might have expected, this news can still come as a shock. It raises questions about what these changes mean for your future. Taking in this news may take time, so it can be important to try to be gentle with yourself.

Coming to terms with change and the associated loss involves a grieving process. Many feelings can come and go across time, such as sadness, fearfulness, anger and frustration.

As well as the emotional impact, there are also the effects on your life in a wider sense. Possible loss of work, impact on finances, possible restrictions on physical activity and managing uncomfortable bodily sensations.

The challenge is learning how to live differently with what’s happening, to live your life as best you can, including the symptoms and effects of your condition.

Remember that people do find ways to embrace these challenges and carry on living rewarding and satisfying lives.

In her article Dealing with Deterioration in Health, Sarah Barker, one of our volunteers, offers her thoughts about ways of coping with the emotional impact of when things don’t get better.

Finding ways to adapt to changes such as, not being able to carry out every day activities as easily as before, manage increased physical symptoms, emotional distress or adjustment to the possibility of needing more care and support, can be really hard. Facing the Future is an article written by some of our member’s on their experience of getting older and adapting to these challenges.

Living with the Enemy: Coping with the stress of chronic illness using CBT, mindfulness and acceptance by Ray Owen is a thought provoking and practical book that looks at finding ways to deal with the emotional impact of living with a long term physical health condition.

Supportive options to consider

  • Maintain a routine. This can help by providing a framework for your day. Think about what would be important and supportive to include. Going outside, a time of relaxation, getting involved in an activities that lift your spirits, spending time with loved ones, friends – prioritise.
  • Keeping in touch with others. Some people have a tendency to withdraw when going through hard times or if feeling down. Try to keep talking to loved ones about the effects of changes. Stay in touch with any communities you may belong too. Sometimes it helps to talk with someone outside of family and friends.  Find out what other agencies can offer in help and support.
  • Get help. Your GP should be able to help with putting you in contact with local services.  At some point you might want to consider referral to an Occupational Therapy Service and contacting Social Services to request a Community Care Assessment and/or a Carers Assessment. See our page for Carers.
  • Management of ongoing symptoms. Speak with your Cardiologist or Specialist Nurse as they might be able to offer specific advice.
  • Find ways to soothe, settle and ground yourself. These can help with managing pain, uncomfortable physical symptoms and associated feelings. This might be through relaxation, mindfulness or other activities you find soothing or a comfort.

Please see our page on Advanced Stage Care for more information links and support, making wills, making advanced care planning and power of attorney.

For more information, advice and support on depression, anxiety, mindfulness, dealing with surgery, post-traumatic stress, and more.

Other places for support and information

The Pulmonary Hypertension Association has lots of useful information and self-help resources on their website. Their sister website Living your Life with PH is designed to help you along your journey with PH after diagnosis.

The Arrhythmia Alliance have information on heart rhythm disorders. Helpline: 01789 450 787

Some local areas run Expert Patient Programmes or Self Management Courses for for anyone living with a long term condition. These aim to provide support and develop self-confidence. Ask your GP if there is one near you or try a web search.

With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.


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