The ACHD Nurse Specialists run a telephone helpline 01603 287292 (answer phone Mon-Fri 9:00-16:30) which is also supported by the rest of the Cardiology Nurse Specialist team if Toni, Beth or Chloe are unavailable. They are also contactable by email email@example.com. Evenings and weekends only – if urgent advice needed contact the Cardiology coordinator 01603 286286 bleep 0099.
Appointments and Between Outpatient Visits
It is very important for the ACHD patient to attend their regular follow up appointments in order to monitor their condition and pick up any problems at an early stage. If you have a mobile phone please register the number with the cardiology reception desk (01603 286259) and a reminder of your appointment will be sent to your phone. If an appointment date is inconvenient please contact Dr Freeman’s or Dr Stamtelatou’s secretary to rearrange, please see Phone Numbers Page. If you have any problems that occur before your next appointment please contact Toni, Beth or Chloe for advice.
Referral for Heart Operations or Catheter Treatment (“interventions”)
The main surgical centres where operations or catheter intervention will occur are in London. Our primary links are with the Barts Health Centre GUCH unit and the Guys and St Thomas’ Hospital ACHD service. Some patients may be referred to the Royal Brompton, if their previous early operations were undertaken there. Sometimes we refer patients to other surgical centres including Birmingham or Southampton. Papworth is the local general adult cardiothoracic surgical centre. The Papworth surgical team are specialists in conditions affecting the aortic valve and we may discuss your case for operation with them. However for many other congenital heart operations or interventions you will not be going to Papworth – even though it is closer.
Dr Freeman and Dr Stamatelatou work closely with the London centres. Every week, information about investigations in people are discussed at a meeting of GUCH/ACHD cardiologists, nurses, congenital surgeons, electrical specialists (electrophysiologists), structural interventionalists (catheter based interventions). This meeting may be called an MDT (multidisciplinary meeting) or JCC (joint cardiac conference). If your case has been discussed at one of these meetings your consultant will write to you with the recommendations and arrange to see you to discuss further as necessary.
Infective endocarditis is an infection of the lining of the heart, particularly affecting the heart valves, caused mainly by bacteria but occasionally by other infectious agents. It is a rare condition but people with certain structural cardiac conditions are at increased risk if bacteria enter the bloodstream. This can occur through gum disease, tooth abscesses, skin and nail infection, contaminated needles, and body piercings and tattoos.
Fortunately there are things you can do to reduce the risk of infection. The most important is to make sure your teeth and gums are clean and healthy, brush your teeth twice a day, use dental floss and visit the Dentist at least once a year for check-ups. You can find a dentist by visiting NHS choices at www.nhs.uk. We also recommend you avoid tattoos and piercings altogether, as any procedure which breaks the skin carries a risk of introducing bugs into the blood stream.
Signs to look for – if you have hot and cold sweats for longer than 2 weeks, you feel unwell, lethargic and tired – always think “could this be that heart infection –“endocarditis”. Always ask the GP or practice nurse to think about it and consider testing your blood before they prescribe any antibiotics. If you are still worried, phone the ACHD Specialist Nurse team – it is better to have blood tests to detect bacteria in the blood stream to exclude it.
Please see current guidance in our Prevention of Endocarditis in adults and children document.
Pregnancy and Contraception
For all women with ACHD it is best for mother and baby’s health to have a planned pregnancy. This is particularly important for women with congenital heart conditions as there are certain conditions and medications which could put the mother or unborn child at risk. Your consultant will advise you about your particular case and what type of contraceptive options are best for you. If planning a pregnancy advice will also be given about any investigations that should be performed before conception and changes to your medication or treatment to give the best possible outcome.
As soon as you discover that you are pregnant please let us know. Phone the ACHD specialist nurses or Dr Head or Dr Stamatelatou’s secretary and we will arrange for you to come to the Maternal Cardiology Clinic. Please ask your GP to specifically refer you for consultant led obstetric care.
Pregnancy and Warfarin – If you are taking Warfarin for a metal valve, we must advise you about the options for your anticoagulation, preferably before you conceive and at the latest by 6 weeks after the first day of your last period. The decision is an individual one, as every woman’s case is different, and will be made with you by Dr Stamatelatou or Dr Head and one of the specialist obstetricians. If you change to heparin injections for some or all your pregnancy these will need to be given twice daily, and the level closely monitored. We will arrange this for you with the haematology department here at the NNUH.