Find out what to expect when you come to hospital for your pulmonary hypertension appointment.
Before your appointment
Patients with an urgent case are usually offered an appointment within two weeks. All other patients will be seen in the first available clinic. New patients are normally seen in the clinic on Monday mornings. We encourage all new patients to bring a family member, close friend or carer with them to their first clinic visit. You are welcome to ask for a chaperone and we will endeavour to provide one for you. Please wear comfortable clothing and footwear that are easy to take on and off 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 telephone number(s)
- 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
Prior to your appointment you will have been sent an orange self-assessment pro forma to complete. Please ensure that you bring this with you to the appointment.
During your appointment
Patients will need to check in at outpatients main reception in A block (A and B desk). The initial appointment may take between three and four hours. Follow-up appointments can take approximately one hour. Clinics sometimes run behind time as many patients arrive with hospital transport and sometimes patients are more unwell and require extra assistance. The clinic information boards are kept updated with the typical waiting times.
Please note that we are a teaching hospital, so medical students 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 initial appointment to see the pulmonary hypertension specialist you will be asked many questions and will have some standard investigations. It is advisable that you are accompanied to this visit by your partner or a significant person in your life as the impact of pulmonary hypertension affects the whole family, not just the patient.
At your appointment you will meet the pulmonary hypertension medical and nursing staff. A full medical history will 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.
The following tests are usually arranged during inpatient investigation visits, but some may also be performed during an outpatient appointment:
- ventilation perfusion scan (VQ scan): This scan is used to examine blood and air supplies to your lungs. You will be given a very small amount of intravenous radioactive dye and a few minutes later you will be scanned with a special camera. We will then get 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 no discomfort is involved. This test will show us if you have any blood clots in your lungs
- abdominal ultrasound: This investigation is similar to the echocardiogram. We use gel over the abdomen which allows us to look at the organs inside the abdomen to 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: The level of oxygen in your blood is monitored while you are asleep to check for low levels, which may be the cause of your pulmonary hypertension
- CT scans high contrast and spiral 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 also called nuclear magnetic resonance and produces vertical and cross-sectional images, similar to CT scanning. This scan does not require a contrast medium
- 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 cath 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 groin, arm or neck. Measurements of pressure and oxygen levels are then taken in the upper and lower chambers of the heart and the blood vessels in the lung. You will be awake for the procedure, but a local anaesthetic will make this painless. Sometimes you will be given intravenous fluid 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 the 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 and the arteries supplying the heart muscle with blood can be clearly seen and assessed for any blockages
- 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, should you choose
- selective pulmonary angiography: A catheter is passed through one of the large veins, under local anaesthetic and dye is injected so that the blood vessels of the lung can be clearly seen and assessed. This test is only performed on patients who have pulmonary hypertension caused by blood clots and cannot have an MRI scan. It can help assess whether surgery to remove the clots would be possible. After your first appointment we may ask you to come back and spend between three and five days as an inpatient, so we can run further tests and evaluate your health needs and treatment options
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.
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.
In some cases we may need to admit you urgently, either for tests or for 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.
We will provide all new patients with information about pulmonary hypertension and give them the details of the patients association, PHA-UK.
After your appointment
If we think it is appropriate to investigate your pulmonary hypertension further we will arrange for you to come into hospital to have most, but not necessarily all, of the tests above.
The results are discussed at our multidisciplinary team meeting. Your diagnosis will be explained and if appropriate, drug therapy will commence during your inpatient stay.
After your assessment if a diagnosis of pulmonary arterial hypertension is confirmed you will be seen every three, six or 12 months depending on your treatment and plan of care that is agreed. Usually follow-up will be shared between this centre and your referring consultant.
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.
The results of your tests will 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.
If we think you may need an operation, we shall discuss this with you. Your main sources of long-term support will usually be your GP and, if applicable, the hospital consultant who referred you to our service. We may ask you to come back to the hospital for a check-up at regular intervals but not all patients will need to come back to the hospital. If you become unwell at home your GP should be the first person you contact.
Following a diagnosis of pulmonary arterial 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.
The PHR provides a source of information and contact for all health care providers. As we expect your referring consultant and your GP to be your principal sources of long-term support, this will enable them to be aware of the significant contacts you have had with this team.
You will be offered copies of your clinic and discharge letters, for you to file them at the back of the PHR. Please remember to take it 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.
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