# Symptoms and Phases of Pulmonary Hypertension
Pulmonary hypertension does not always progress in tight successive phases. The disease develops gradually, but the time at which symptoms become noticeable, and how quickly they get worse, varies greatly from person to person. The following is a description of how the symptoms usually occur as the disease progresses.
Early stage: minimal symptoms, accidental discovery
At the earliest stage, there is already increased pressure in the pulmonary vessels, but many people have no noticeable symptoms yet. The disease is sometimes discovered by chance on the basis of an ultrasound of the heart, for example made for another reason.
**Possible complaints in this phase: **
- No symptoms, or very mild, vaguely perceived tiredness
- Sometimes mild shortness of breath only during strenuous exercise (climbing stairs, fast walking)
- In rare cases, a slight feeling of restlessness in the chest
**What this means in daily life:**
Most people notice little or nothing in this phase. Normal activities will continue without restrictions. Some people just happen to feel a little less fit than usual, without attributing this to anything serious.
**Figures about this phase: **
There is no accurate data on how long someone stays at this stage — it depends a lot on what causes the hypertension and how fast it progresses. In patients with pulmonary arterial hypertension (PAH), years may pass before symptoms become noticeable; in others, days or weeks.
Advanced stage: exercise restriction and fatigue
As the pressure in the pulmonary vessels continues to rise, the heart begins to work harder. The right ventricle of the heart has to pump harder to force blood through the narrow pulmonary vessels. In this phase, symptoms are felt more clearly.
**Most common complaints: **
- Shortness of breath during exercise (walking, climbing stairs, household chores) — this is usually the first obvious symptom
- Fatigue and lethargy, even after light activity
- Dizziness or light-headedness
- Chest pain or pressure, especially during exercise
- Sometimes a faster heart rate than normal (palpitations)
- Weakness in arms and legs during exercise
**What this means in daily life:**
This stage limits what you can do. Walking is becoming more cautious. Climbing stairs requires rest afterwards. Housework tires more quickly. Many people change their routine without first discussing it medically. Psychologically, this can be frustrating: you feel inexplicably tired and limited.
**Figures about this phase: **
In untreated pulmonary arterial hypertension, median survival (when half of a large number of patients are still alive) without medication is approximately 2 to 3 years after diagnosis — but this is an average of data that became widely available before modern treatment. These figures only apply at the population level and say nothing about one person. Individual differences are significant and depend on many factors: the cause of hypertension, how fast it develops, what side diseases are present and whether and what treatment is given.
Advanced stage: significant impairment and symptoms at rest
At this stage, the pressure in the pulmonary vessels is much higher. The right ventricle of the heart becomes fatigued and weak (right ventricular dysfunction). The symptoms are now also felt during normal, light activities and sometimes even at rest.
**Possible complaints: **
- Shortness of breath even when exercising lightly, walking on flat terrain, or even sitting still
- Severe tiredness and inability to perform daily activities
- Chest pain or tightness
- Heart palpitation and irregular heartbeat
- Dizziness and fainting (syncope), especially during exercise
- Swollen legs and feet (oedema) due to fluid accumulation
- Abdominal distension (ascites), because blood runs back to the abdominal organs
- Bluish or purple colored lips and nails due to lack of oxygen
- Cough, sometimes with blood
- Nausea
**What this means in daily life:**
This stage has major impact. Functioning independently becomes more difficult. Many need help with household tasks. Work becomes impossible. Social activities are limited. Using the toilet, showering and getting dressed requires caution and rest. Many people feel anxious and depressed about the loss of independence. Sleep is often disrupted by shortness of breath when lying down.
**Figures about this phase: **
With modern treatment (combination of medicines aimed at dilating the lung vessels) the situation has improved for many patients. Median survival for patients treated for PAH was around 2015–2020 approximately 5 to 7 years after diagnosis in specialized centers. However, these are population averages; some patients live much longer, others shorter. This depends on many individual factors, such as how quickly the disease progressed before diagnosis, what underlying cause, age and how well one responds to medicines.
Terminal stage: severely ill with right heart failure
In the final stage, the right chamber of the heart clearly fails. Blood cannot be pumped around efficiently, and fluid accumulates in the lungs, abdomen and legs. Oxygen supply drops dangerously.
**Most common complaints: **
- Severe shortness of breath, even at rest, very burdensome at night
- Unexplained difficulty breathing (orthopnea) — lying down is almost impossible
- Extreme fatigue and inability to perform any activity
- Chest pain
- Severe heart palpitations and irregular heartbeat
- Fainting
- Severe fluid accumulation: swollen legs and feet, bloated abdomen
- Headaches and confusion due to low oxygen and low blood sugar
- Loss of appetite and weight loss
- Anemia (pale appearance)
- Dialysis may be needed if kidney failure occurs
- Coughing up blood
**What this means in daily life:**
This stage means almost complete dependence. Most patients are homebound or admitted to hospital or hospice. Oxygen is necessary to keep oxygen levels at acceptable levels. Movement is minimal. The focus shifts to comfort, pain relief and emotional support. Family and loved ones have a crucial role.
**Figures about this phase: **
Without intensive hospital care, survival in this stage is weeks to a few months. With continued treatment this can be longer. But prognosis is very difficult to estimate and varies greatly. At this point, patients and their families usually discuss not primarily medical treatment, but comfort, values and farewell.
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Signs to contact your doctor or specialist
Contact with your healthcare provider is important when:
- **Severe shortness of breath at rest** develops, or condition deteriorates significantly
- **Fainting or loss of consciousness** occurs
- **Chest pain** that does not go away or gets worse
- **Coughing up blood** occurs
- **Severe, irregular heartbeat** with dizziness
- **Fluid accumulation** (swollen legs, abdomen) increases rapidly
- Existing **medicines seem to help less**
- **Fever, cough or lung symptoms** develop (risk of infection)
Also, when symptoms gradually worsen, it is important to discuss this regularly with your doctor, so that treatment can be adjusted. Many patients are followed in specialized pulmonary hypertension centers, where regular check-ups and medication adjustments take place.
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_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._