The adult congenital heart disease (ACHD) unit provides care for adolescent and adult patients with a variety of congenital (present at birth) and inherited heart conditions. This also includes patients with Marfan syndrome and some types of pulmonary hypertension.

The unit offers all types of treatment including catheter lab treatment, specialised drug therapies and heart operations (including transplantation).

There is a decidated transition service looking after teenagers and young adults. There is also a special pregnancy and heart disease service to look after pregnancy women who have heart problems. 

The ACHD unit provides a full range of inpatient and outpatient care. This includes:

• A dedicated inpatient ward (Paul Wood ward)

• Outpatient clinics

• Specialist imaging (including echo, CT and cardiac magnetic resonance)

• Specialist clinics – eg. Marfan, Eisenmenger

• A specialist pregnancy and contraception service

• A catheter intervention programme

• Access to a full range of medical and surgical care, including transplantation

• An electrophysiology (heart rhythm) service

Adult congenital heart operations

In 2009/10 we performed 556 congenital heart operations (including 121 adult operations) and more than 400 catheter-based procedures.

Outpatient clinics

The outpatient clinic is where you will interact with the unit most frequently. On the day of your visit, before seeing the doctor, you may require tests such as an ECG, chest X-ray or echo scan.

At clinic you will be seen by one of the cardiology doctors. This may be one of the consultants, a registrar or a clinical fellow. If you wish to be seen by a specific person please let the clinic nurse know and  we will do our best to arrange this.

Inpatient care

If you are admitted to the ward you will be looked after by a specific consultant. At the moment we arrange consultant care on a  rotational basis, so you may see more than one of the consultants if you are in hospital for more than a few days. If you are not sure which consultant is looking after you, please just ask.

Research and training

The unit has an active program of research and training – both of which are vital to the future care of patients with congenital heart conditions. You may be asked to participate in some of these studies. If so you will be given information on the study, which you should consider carefully before agreeing to take part.

Looking after your health

The most important way of looking after your health is to remain under regular specialist follow-up. Some patients with simple congenital heart problems can be discharged from long-term care but all others will need to be seen regularly (although this may only be every couple of years). It is important you come to clinic even it you feel fit and healthy.

Exercise and activity

Keeping fit has lots of health benefits. Most patients with congenital heart disease should be exercising regularly. Patients with more severe heart disease might need to work to certain limits. Ask your doctor what kind of exercise is best for you – you might be surprised at how much you might be able to do.

Pregnancy and contraception

Pregnancy and contraception can be associated with extra risks when you have heart problems. Planning is key so please take the  opportunity to discuss these issues with your heart specialist sooner

rather than later.

The service has a special pregnancy and contraception clinic to allow you to discuss these issues at length. 

If you become pregnant unexpectedly and have not had the chance to discuss the issues in advance please let us know as soon as possible.

General health

Like everyone else if is important that you have a healthy diet, avoid smoking and other drugs, and drink alcohol in moderation.

Understanding your diagnosis

The more you understand about your heart condition the more able you are to be involved in any decisions that need to be discussed. You will also be able to explain your heart condition to other doctors who may not be heart specialists.

If your heart disease is complicated ask the doctor to draw you a picture of your heart or to give you a “heart passport” with all the important information. It is the hospital policy to send you copies of all your correspondence and you should keep this in a file. Having a copy of your heart tracing (ECG) is also a good idea.

If you are admitted to a hospital somewhere else always remind staff there about your heart condition. If you, or staff at the hospital, are concerned about your heart you can call us. Many people with congenital heart  disease find patient associations an important source of support and so you may want to consider joining one of these.

Endocarditis

Endocarditis (an infection of the heart) is rare but can be serious. To avoid these infections you should:

• Look after your general health

• Look after your teeth and gums (infections can come from your mouth) – be sure to visit the dentist regularly

• Take antibiotics before dental work, or other procedures likely to introduce infection, if you have an “at risk” lesion

Other possible sources of infection are the skin (skin conditions, piercing, tattoos). Other precautions might help to reduce risks so  please discuss with your doctor. If you develop a fever or have signs of an infection ask the doctor to take a blood test (blood cultures) before you take antibiotics.