Living with heart transplant living overview

Overview

A heart transplant is a surgery where a person's damaged heart is replaced with a healthy heart from a donor. After the transplant, your medical team will help you manage your new heart and stay healthy.

Heart transplants are not common. They are done only when a heart is so severely damaged that it cannot safely continue on its own.

Heart transplants can be performed on adults and children of all ages. You may be considered for one if you have end-stage heart failure or other serious heart conditions that have not improved with other therapies.

Symptoms

Common symptoms

• Feeling more tired than usual
• Shortness of breath during light activity
• Swelling in your ankles, feet, or belly
• Rapid weight gain over a few days
• Fever or chills
• Flu-like symptoms that last more than a day

Symptoms in children

• Irritability or being unusually fussy
• Poor feeding in infants
• Not gaining weight as expected
• Unusual sleepiness or low energy
• Fever with no obvious cause

Symptoms in older adults

• Confusion or feeling 'just not right'
• Weakness or muscle loss
• Poor appetite
• Frequent falls or loss of balance
• Worsening shortness of breath with activity

Causes

Main causes

• End-stage heart failure that does not respond to medicines or devices
• Severe cardiomyopathy (disease of the heart muscle)
• Congenital heart defects that lead to heart failure
• Untreatable severe coronary artery disease or life-threatening heart rhythm problems

Risk factors

• Your immune system rejecting the donor heart
• Infections because of immunosuppressive medicines
• Narrowing of the arteries of the new heart (transplant vasculopathy)
• Surgical complications such as slow wound healing
• Not taking your anti-rejection medicines as prescribed

When to see a doctor

See a doctor urgently if:

• If you have any signs of rejection or infection, such as fever, shortness of breath, or new fatigue
• If you are unsure about any symptom, call your transplant team right away

Book a routine appointment if:

• Keep all scheduled appointments with your transplant team
• Expect regular blood tests, electrocardiograms (heart rhythm checks), echocardiograms (ultrasound of the heart), and occasional heart biopsies

Diagnosis

After a heart transplant, your doctors will run regular tests to check how well your new heart is working and to look for early signs of rejection or infection.

Tests that may be done

• Blood tests to check organ function and look for markers of rejection
• Endomyocardial biopsy – a small sample of heart tissue taken through a vein to check for rejection
• Echocardiogram – an ultrasound test that shows how well your heart is pumping
• Electrocardiogram (ECG) – a simple test to record your heart's electrical rhythm
• Coronary angiography – an X-ray test that checks the blood vessels feeding your new heart

What to expect at your appointment

Tests are most frequent in the first year after transplant. Over time, they become less frequent, but you will still need lifelong check-ups to keep your heart healthy.

Treatment

The main treatment after a heart transplant is a lifelong plan to keep your new heart healthy and prevent your body from rejecting it. This plan includes immunosuppressive medicines, regular monitoring, and a healthy lifestyle.

Self-care at home

• Take all prescribed medicines exactly as directed, without missing doses
• Weigh yourself every day and keep a record of any sudden changes
• Wash your hands often and avoid crowds or people who are sick
• Keep every follow-up appointment with your transplant team
• Contact your team immediately if anything seems wrong

Medical treatments

After transplant, you will need medicines called immunosuppressants, which calm your immune system so it does not attack the donor heart. You may also need medicines for blood pressure, cholesterol, or infection. Your transplant team will adjust your medicines over time. Never stop or change your medicines on your own.

When is surgery considered?

You have already had the transplant surgery. In rare cases, a second transplant may be discussed if the new heart begins to fail. Your team will always talk through your options and support your decisions.

Living with this condition

Life after transplant can be very positive. Many people return to work, hobbies, family life, and recreation. It helps to create routines around medicines and appointments so you can focus on enjoying your days.

Lifestyle tips

• Avoid smoking and secondhand smoke
• Limit alcohol as advised by your team
• Protect your skin from strong sunlight
• Avoid close contact with people who have colds, flu, or other infections
• Talk to your team before receiving any vaccine

Diet and exercise

Eat a balanced diet that is low in salt and unhealthy fats. Stay active with walking, cycling, or gentle activities. Ask your transplant team before starting a new exercise routine so they can help you choose what is safe for you.

Mental health and emotional wellbeing

It is common to feel anxious, sad, or overwhelmed after a transplant. The emotional side of recovery is just as important as the physical side. Talk openly with your team and loved ones about how you are feeling.

Prevention

Rejection and infections cannot always be prevented, but you can reduce your risks by taking your medicines as prescribed, following your care plan, and reporting symptoms early.

Vaccines

Staying up-to-date with recommended vaccines is important. However, some vaccines are not safe for people who have had a transplant. Ask your transplant pharmacist or doctor which vaccines are right for you and when to get them.

Screening programmes

Regular screening tests are a key part of living with a heart transplant. They help catch problems early, before they become serious.

Complications

If left untreated

• If rejection is not caught and treated, the donor heart can become damaged or stop working.
• If an infection is not treated, it can spread and become life-threatening.
• Narrowing of the transplant heart's arteries can lead to chest pain, heart failure, or a heart attack.

Long-term outlook

Outcomes after heart transplant have improved greatly in recent years. Many people live for well over a decade, and some for much longer. By working closely with your transplant team and following your care plan, you can give yourself the best chance of a healthy, active life.

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