Newly diagnosed with heart failure: your first 30 days.
Being told you have heart failure can turn your world upside down overnight. We know, because it happened to us. This guide breaks the first month into small, manageable steps so you know what to ask, what to track and how to look after yourself.
By Gareth & Katrina Robinson
Updated
6 min read
In short
- Heart failure means your heart isn't pumping as well as it should. It doesn't mean your heart has stopped or is about to.
- Ask your care team for your ejection fraction, the type of heart failure you have and what's causing it.
- Take your medicines exactly as prescribed, and weigh yourself every morning.
- Learn the warning signs, so you know when to call your care team and when to call for emergency help.
- You don't have to do this alone. Support for you and your family makes a real difference.
Feeling overwhelmed is normal
When Gareth was diagnosed with heart failure and an ejection fraction of just 15%, our lives changed overnight. There was fear, uncertainty and more questions than answers. If you're feeling the same way right now, you're not doing anything wrong. Shock, worry, sadness and even anger are all normal reactions to a diagnosis like this.
The words "heart failure" sound frightening, but they describe a heart that needs support to pump well, not a heart that has given up. Many people live full lives with heart failure, and treatment keeps improving. Gareth's heart function has since returned to the normal range. Everyone's journey is different, but there is reason for hope.
The first month is about building a foundation: understanding your condition, getting your routine in place and finding support. Take it one step at a time.
Understand your diagnosis
Heart failure is a long-term condition where the heart doesn't pump blood around the body as well as it should. This can cause breathlessness, tiredness and fluid build-up, often in the ankles, legs or tummy.
Your care team will usually measure your ejection fraction (EF) with a scan called an echocardiogram. EF is the percentage of blood your heart pumps out with each beat. A normal EF is typically between 50 and 70%. Heart failure is often described by EF:
- Reduced ejection fraction: an EF of 40% or lower.
- Mildly reduced ejection fraction: an EF of 41 to 49%.
- Preserved ejection fraction: the EF is in the normal range, but the heart muscle is stiff and doesn't fill properly.
Knowing your type matters, because it guides which treatments are recommended. If you'd like to understand EF in more depth, read our guide Can ejection fraction improve?
Questions to ask your care team
Appointments can feel rushed, and it's easy to forget what you wanted to ask. Write your questions down beforehand and bring someone with you if you can. A good starting list:
- What type of heart failure do I have, and what is my ejection fraction?
- Do you know what caused it? Can the cause be treated?
- What does each of my medicines do, and what side effects should I look out for?
- How much should I drink each day, and do I need to limit salt?
- What weight gain should prompt me to call you?
- Can I be referred to cardiac rehabilitation?
- Who do I call if I'm worried, and how do I reach them out of hours?
- When is my next scan or review?
If something doesn't make sense, ask again or ask for it in writing. It's your heart and your life. Good care teams want you to understand.
Week 1: get your medicines organised
Medicines are one of the most important parts of heart failure treatment. You may be started on several at once, and the doses are often increased gradually over the following weeks.
- Use a weekly pill organiser and set a daily alarm on your phone.
- Keep an up-to-date list of every medicine, dose and time. Take it to every appointment.
- Ask your pharmacist to explain anything you're unsure about.
- Don't stop or change a medicine on your own, even if you feel better or get side effects. Speak to your care team first.
- Check with a pharmacist before taking any new over-the-counter remedy, including some painkillers and supplements.
Week 2: start your daily checks
Small daily checks help you spot changes early, often before you feel unwell. This was one of the habits that helped Gareth most.
Weigh yourself every morning
Weigh yourself at the same time each day, after going to the toilet and before eating or getting dressed. A sudden increase in weight is usually fluid, not fat, and can be an early sign that your heart failure needs attention.
Many heart failure teams advise getting in touch if you gain 1 kg (2 lb) overnight or 2 kg (4 lb) over three days. Ask your own team which limits apply to you, and follow their advice.
Check how you feel
Notice whether you're more breathless than usual, whether your ankles or legs are more swollen, and whether you need more pillows to sleep. Our free Daily Heart Check walks you through these questions in about a minute and keeps a private record you can show at your next appointment.
Week 3: move gently and eat with your heart in mind
After a diagnosis, many people become frightened of being active. It's understandable, but for most people gentle, regular movement is part of getting stronger. The key is doing it safely and building up gradually.
- Ask about cardiac rehabilitation. It offers supervised exercise and education, and helps rebuild confidence.
- Start with short walks and increase slowly. You should be able to talk while you move.
- Stop and rest if you feel dizzy, very breathless or have chest discomfort, and tell your care team.
When it comes to food, follow your care team's advice on salt and fluids, because the right amount differs from person to person. Many people find that cooking more meals from scratch makes it easier to keep salt down without losing flavour.
Week 4: look after your mind and your relationships
Heart failure affects more than your heart. It can change your mood, your sleep, your work and your relationships. Fear and health anxiety are especially common in the early months.
Talk about how you're feeling with the people close to you. If worry or low mood is affecting your daily life, tell your GP or care team, because help is available. Our guide to coping with anxiety after a diagnosis has practical techniques you can start today.
Your partner or family are on this journey too. If someone is caring for you, share our carer's guide with them.
Know your warning signs
Knowing when to act is one of the most reassuring things you can learn.
Sudden weight gain, more breathlessness than usual with everyday activity, more swelling in your ankles, legs or tummy, needing more pillows or waking up breathless, a new persistent cough, dizziness, or feeling much more tired than usual.
Severe breathlessness at rest, chest pain that doesn't ease with rest or your prescribed medicine, fainting or collapse, coughing up pink or frothy mucus, or new confusion. Don't drive yourself to hospital.
Common questions
Can you live a normal life with heart failure?
Many people with heart failure go on to live full, active lives, especially with the right treatment, daily self-care and support. How heart failure affects you depends on its type, its cause and how you respond to treatment, so ask your care team what to expect in your situation.
Can heart failure get better?
For some people, yes. Heart function can improve with treatment, particularly when the underlying cause can be treated. Gareth's ejection fraction went from 15% to the normal range. Improvement isn't guaranteed for everyone, and it's important to keep following your treatment plan.
Should I stop exercising after a heart failure diagnosis?
Usually not. For most people, gentle regular activity is part of recovery. Ask your care team what's safe for you, and ask to be referred to cardiac rehabilitation, which helps you build up activity safely.
Gareth was diagnosed with heart failure and an EF of 15%, and his heart function has since returned to the normal range. Katrina, a clinical hypnotherapist and holistic practitioner, supported him as his wife and carer. Together they created From Diagnosis to Strength.
This guide shares lived experience and general information. It does not replace advice from your cardiologist, GP or heart failure team. Always follow the plan your own care team gives you.