Exercise and activity with pulmonary hypertension

The NHS lists breathlessness, tiredness, feeling faint or dizzy, chest pain, palpitations and swelling in the legs, ankles, feet or tummy as symptoms, and says they often get worse during exercise, limiting the ability to take part in physical activity.

Because the right side of the heart has to work against high pressure in the lung arteries, the usual advice to push on through breathlessness does not apply. Activity plans should come from the specialist team that knows your pressures and treatment.

Asthma + Lung UK says the main tests are an echocardiogram and right heart catheterisation, the latter performed at specialist centres and described as the best test to confirm the diagnosis. Additional tests include ECG, cardiopulmonary exercise testing, walk tests, chest X-rays, CT, MRI and ventilation-perfusion scans to find underlying causes.

Exercise and walk test results provide a baseline that the team uses to judge whether treatment is working. Ask for your results to be explained in plain language.

The NHS says eight specialist centres across the UK provide treatment: four in London, and one each in Cambridgeshire, Sheffield, Newcastle and Glasgow, with the named hospitals listed on its page. Services change, so confirm details with your GP or the centre.

Many people are looked after through shared care, where the specialist centre sets the treatment plan and local teams support monitoring. Ask which team to contact if you become unwell, and carry a summary of your diagnosis and medicines.

The NHS says treatments include anticoagulants, diuretics, home oxygen if blood oxygen is low, and digoxin, plus advanced therapies that relax lung arteries such as endothelin receptor antagonists, phosphodiesterase 5 inhibitors, prostaglandins, soluble guanylate cyclase stimulators, calcium channel blockers and sotatercept. Asthma + Lung UK adds iron supplements, vaccinations and mental health support.

Surgical options include pulmonary endarterectomy for clots, balloon pulmonary angioplasty, atrial septostomy and transplant in severe cases. Many people notice a better capacity for activity as treatment takes effect.

There is no single exercise prescription that fits everyone with pulmonary hypertension, but some principles are widely taught. Break tasks into stages, rest before you are exhausted, sit for tasks such as dressing or cooking where possible, and avoid sudden heavy effort.

Asthma + Lung UK says that people whose breathlessness limits activity can benefit from structured pulmonary rehabilitation in lung disease, but for pulmonary hypertension you should check with your specialist team before joining any class or programme, so that the exercise is monitored appropriately.

• Stop and rest if you feel faint, have chest pain or become very breathless.

• Avoid exercise in extreme heat or cold unless your team has advised otherwise.

• Tell any gym or physiotherapist about your diagnosis and medicines.

The NHS says having pulmonary hypertension can affect your ability to carry out everyday activities and points to the Pulmonary Hypertension Association UK for practical support. If you use home oxygen, ask how to use portable supplies on outings.

Pregnancy carries significant risks for people with pulmonary hypertension, so speak to your specialist team about contraception and planning before pregnancy. Ask about air travel and altitude too, because lower oxygen levels can be an issue for some.

The NHS says the outlook depends on the cause, how early the diagnosis is made, symptom severity and underlying health, and that without treatment it may progress to potentially fatal heart failure. Regular review matters.

Report worsening breathlessness, new swelling, fainting or chest pain to your specialist team, and call 999 for collapse or severe breathing difficulty.