Living with heart failure for 30 years

A long history with heart failure does not make every new symptom part of your usual pattern. The heart, kidneys, blood pressure, rhythm and other conditions can change independently. Fatigue, cough, palpitations or swollen ankles should be compared with your baseline and discussed when they persist or increase.

Over time, appointments may consider walking tolerance, falls, mood, memory, nutrition, sleep, work or caring responsibilities, and your preferences for future care. Hypertension and atrial fibrillation may also affect the plan.

Keep an up-to-date medicine list, including non-prescription products, and bring it to reviews. Use a notebook or phone record for symptoms and any agreed home readings. Ask whether your treatment needs checking after an infection, hospital stay, fall or major change in activity.

Plan activity around your best time of day, with pauses before exhaustion. Follow individual advice about salt, fluids and alcohol. Arrange practical support for transport, shopping or medication organisation if these tasks have become difficult, and include a trusted person in appointments if you wish.

Call your healthcare team if your breathing, swelling, cough, energy or heart rhythm differs from your established baseline, especially if the change develops over a short period. Get emergency help for severe breathlessness at rest, fainting, chest pressure, sudden confusion or a new one-sided weakness. Keep an agreed action plan somewhere easy to find.

Ask what has changed in your heart function, which medicines still fit your goals, how often kidney tests are needed, and what signs mean you should call urgently. Discuss advance planning, exercise limits and support for everyday tasks.