Pulmonary hypertension patient information

Find out what to expect when you come to hospital for your pulmonary hypertension appointment.

Before your appointment

We usually see new patients within four weeks of referral. More urgent patients are typically seen within two weeks.

Prior to your appointment, we will send you a self-assessment form. Please complete this form and bring it with you to your appointment.

Please remember to check your appointment letter for anything specific you have been asked to take with you. In addition, it would be helpful if you could bring the following:

• Your full address and phone number, as well as a full address and phone number for your next of kin
• Your appointment card and appointment letter
• Your GP’s name and address
• Money to pay for any prescriptions, or an exemption card
• A list of questions you may want to ask your consultant
• A list of your medications
• The names of the consultants in other hospitals that are involved in your care 

New patients are normally seen in our clinic on Monday mornings. Please wear comfortable clothing and shoes that are easy to put on and remove to your appointment.

We encourage all new patients to bring a family member, close friend or carer with them to your first appointment. You are also welcome to ask for a chaperone and we will endeavour to provide one for you.

At your appointment

Your first appointment may take three to four hours, while follow-up appointments may last approximately one hour.

When you arrive, please check in at the main outpatients department in A block at Hammersmith Hospital. You may use the check-in kiosks or check in at the reception desk.

Clinics sometimes run behind, as some patients require more time or additional assistance. Please check the clinic information boards for waiting times.

Please note that we are a teaching hospital, so medical and nursing students and visiting trainees may be present for some appointments. If you do not wish to have them in the room please let the nurse or doctor know and the students will be asked to step outside.

At your appointment you will meet the pulmonary hypertension medical and nursing staff. You will be asked many questions so that a full medical history can be taken and you will undergo an examination of your heart and lungs. 

You will be asked to have some preliminary tests including an electrocardiogram (ECG), echocardiogram, chest x-ray, blood test and a six-minute walk test, which measures the distance you can manage to walk at your own pace up and down a corridor in six minutes.

In some cases we may need to admit you to hospital for tests or treatment. If you are admitted urgently, your care would take place on one of the main hospital wards and you would be under the care of the pulmonary hypertension team.

After your appointment

If we think it is appropriate to investigate your pulmonary hypertension further we will arrange for you to come into hospital as an inpatient.

Some patients are surprised at the number of tests that we may need to do. However, please be assured that you will only be asked to have tests that are necessary to assess your health needs and we practice within recommended guidelines. We always strive to obtain the results of tests that have been carried out by your referring hospital and will only repeat tests if the information obtained is incomplete and preventing us from making a decision about your care.

Some of our patients also agree for their results to be used for research. We will only use your results if we receive your written permission.

Tests and investigations

The following is a description of some of the tests that we may recommend that you have, depending on your individual healthcare needs:

• ventilation perfusion scan (VQ scan): This scan is used to compare the delivery of blood and air to your lungs. We will give you a very small amount of medical radioactive dye into a vein and a few minutes later you will be scanned with a special camera. We will then ask you to breathe a gas containing a small amount of a radioactive tracer through a facemask and be scanned again. The radioactivity is harmless and causes no discomfort. This test will show us if you have any blood clots in your lungs
• abdominal ultrasound: This investigation is similar to the echocardiogram. We will apply gel to your abdomen and use an ultrasound wand to look your abdominal organs and check for any abnormalities or evidence of increased blood pressure in the liver
• lung function tests: These involve a number of breathing tests and will take about 20 minutes to perform. The test will assess how well your lungs are able to work
• nocturnal oxygen saturations: We will monitor the level of oxygen in your blood while you are asleep to check for low levels, which may be the cause of your pulmonary hypertension
• CT scans: These scans give a very clear picture of your heart, lungs and their blood vessels. You are passed through a scanner which takes x-ray pictures of your chest. This is painless and usually lasts around 15 minutes. You will need to stay very still for this test. The test will show the organs in your chest and any abnormalities in the blood vessels
• cardiac magnetic resonance scan: This procedure is called nuclear magnetic resonance and produces vertical and cross-sectional images, similar to CT scanning
• catheter studies: These are special studies and are performed if we need to know how much blood your heart can pump and how you respond to certain treatments. These are performed in the catheter lab and are done as part of a hospital admission. A thin flexible tube (catheter) is passed into one of the large veins, usually in your arm or neck, and rarely the groin. We will measure the pressure and oxygen levels in the upper and lower chambers of your heart and the blood vessels in your lungs. You will be awake for this procedure, but a local anaesthetic will make this painless. You may be given intravenous fluid or asked to undertake some stationary cycling during the procedure and we will recheck the pressure. You may also be given nitric oxide gas to inhale to test how much the blood vessels in your lungs relax. For some patients, we also pass a catheter through an artery, usually in the groin, or wrist under local anaesthetic. Dye is then passed through the catheter so the arteries supplying the heart muscle with blood can be clearly seen and assessed for any blockages. This is called a coronary angiogram
• cardiopulmonary exercise tests (CPX): These are also known as metabolic exercise tests or VO2 max. This test involves you exercising on a static bicycle at a level based on your ability, and should last for about 10 minutes. We monitor your breathing and heart rate throughout the exercise and the work rate will gradually increase until you can no longer keep up. The object of the test is to determine how much exercise you can tolerate and to see how well your heart and lungs respond to the increase in demand. You will always be in control of how much exercise you undertake and will be free to stop at any point
• selective pulmonary angiography: You will be given local anaesthetic and we will insert a catheter into one of the large veins. We will inject dye through the catheter so that the blood vessels of your lungs can be clearly seen and assessed. We will only perform this test on patients who have pulmonary hypertension caused by blood clots and cannot have an MRI scan, or if we need more detailed imaging to plan the best treatment. It can help assess whether surgery to remove the clots would be possible, or if inflating a small balloon inside the pulmonary artery could lower the pulmonary artery pressures

Your test results

The results of these test are available to us whilst you are still in hospital. We will discuss your test results at our multidisciplinary team meeting. These results help us work out whether you may benefit from treatment with specialist drugs, as not all types of pulmonary hypertension will benefit.

We are able to offer treatment that is supported by scientific evidence and available subject to NHS policy for the treatment of pulmonary hypertension. We will explain your diagnosis and possible treatment options while you are still in hospital. We strive to ensure that all patients are involved in the decision process with regards to treatment, a process known as shared decision making.

Treatment for pulmonary hypertension

Pulmonary hypertension treatment is not safe for all patients. If it is found that your pulmonary hypertension is caused by left heart disease or lung disease then you will be referred back to your local consultant for treatment, which will focus on the cause of the disease, as our specialist therapies would not be suitable for you.

If we find that you have chronic blood clots in your lungs an operation may be a suitable treatment option. This will also be discussed with you at the time of your inpatient stay but the operation will not occur until further assessments have been carried out.

Patient held record

Following a diagnosis of pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension you will be given a copy of your plan of care, which will form part of your patient held record (PHR). This record is for you to keep, and will have information about your illness and treatment, as well as test results and clinic letters.

This record is a source of information and includes contact details for all health care providers. We expect your referring consultant and your GP to be your principal sources of long-term support, so this record will enable them to be aware of the significant contacts you have had with our team.

You will be offered copies of your clinic and discharge letters, for you to file them at the back of the record. Please remember to take your record with you when you visit your doctor, local hospital, dentist, or other health professional so that they can record what has been happening to you. We will also provide you with more information about pulmonary hypertension and give you the details of the national patients association, PHA-UK.

Follow up care

After your assessment if a diagnosis of pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension is confirmed you will be seen every three, six or 12 months depending on your treatment and the plan of care that is agreed. In some cases it may be possible for follow-up to be shared between this centre and your referring consultant.

We also run outreach clinics where members of our team go to outlying hospitals. These clinics take place on a monthly basis at the Bristol Heart Institute, Queen Alexandra Hospital in Portsmouth, St Bartholomew’s Hospital, London and The Conquest Hospital, Hastings.