Diffuse Alveolar Hemorrhage

Overview

Diffuse alveolar hemorrhage (say: diff-YOOS al-VEE-oh-lar HEM-or-ij) is a rare problem where bleeding happens inside the lungs, in the tiny air sacs called alveoli (say: al-VEE-oh-lie). These little sacs are where oxygen passes from the air you breathe into your blood. When they fill with blood, it becomes harder for your body to get the oxygen it needs. DAH is not a disease on its own. It is a sign that something else is going on, such as an autoimmune problem, an infection, a heart problem, or a reaction to a medicine or medical treatment. Because it can be serious, it needs medical attention quickly.

DAH is rare. Most family doctors will see very few cases in their whole career. It is mostly seen in hospitals, especially among people already being treated for autoimmune conditions, serious infections, heart problems, or after certain procedures such as a bone marrow or stem cell transplant.

DAH can affect people of any age, including children, but it is most often diagnosed in adults between about 20 and 50 years old. It is more likely in people who already have an autoimmune condition (where the body's immune system mistakenly attacks its own tissues), a bleeding or clotting disorder, or a serious heart or lung problem. It can also happen after some medical treatments or with certain recreational drug use. In many cases, though, it appears in someone who had no known risk factors at all.

Symptoms

Common symptoms

• Coughing up blood, which may look bright red, pink, or frothy
• Shortness of breath, especially with activity, that may build up over hours or days
• A dry cough, or a cough with blood-streaked spit
• Feeling very tired, weak, or wiped out
• Chest pain or tightness
• A low level of oxygen in the blood (your doctor may call this hypoxaemia)
• A fast heartbeat, dizziness, or looking pale, which can be signs of losing blood
• Sometimes a mild fever

Causes

Main causes

• Autoimmune conditions, where the immune system mistakenly attacks small blood vessels in the lungs. Examples include forms of vasculitis and anti-GBM disease, sometimes called Goodpasture's disease.
• Connective tissue diseases such as lupus.
• Heart problems, especially when pressure builds up in the left side of the heart and blood backs up into the lungs.
• Serious infections, including some bacterial, viral, or fungal lung infections.
• Bleeding problems, such as a low platelet count (platelets are cells that help blood to clot) or inherited clotting disorders.
• Medicines that thin the blood or affect clotting, and some other medicines. Never stop a prescribed medicine on your own; talk to your doctor or pharmacist first.
• Complications after a bone marrow or stem cell transplant.
• Inhaling harmful substances, including certain recreational drugs, smoke, or toxic fumes.
• In some cases, no clear cause is found even after thorough testing.

Risk factors

• Having an autoimmune or connective tissue disease
• A known bleeding or clotting disorder
• Being treated with medicines that thin the blood, affect clotting, or suppress the immune system
• A recent bone marrow or stem cell transplant
• A serious infection in the lungs
• Heart disease that raises the pressure inside the lungs
• Smoking, or inhaling harmful substances
• A family history of certain autoimmune conditions, which slightly raises risk

When to see a doctor

See a doctor urgently if:

• You cough up blood for the first time, even a small amount
• You feel more breathless than usual, or the breathlessness is getting worse
• You feel very tired or dizzy, or your heart is racing
• You have a fever along with a cough or breathing problems
• Your symptoms are clearly getting worse over hours or days

Book a routine appointment if:

• You have a long-term autoimmune or lung condition and notice a change in your usual cough or breathing
• You are due a review of medicines that affect bleeding or clotting
• You have questions about a planned procedure or treatment and its possible risks
• You feel anxious about symptoms that come and go

Diagnosis

DAH is usually diagnosed in hospital, often by a team that includes a lung specialist. Doctors start by asking about your symptoms, your medical history, and any medicines you take. They will check your oxygen level and listen to your chest. Because DAH is a sign of another problem, much of the testing is about finding the cause. A chest X-ray or CT scan can show bleeding or shadowing in the lungs. A sample of fluid washed from the lungs can confirm whether blood is present. Blood tests look for anaemia, kidney problems, and signs of autoimmune disease.

Tests that may be done

• Physical examination and oxygen measurement (pulse oximetry)
• Chest X-ray and CT scan of the chest
• Blood tests, including a full blood count, kidney function, and clotting tests
• Blood tests for autoimmune antibodies
• A urine test, because some causes affect the kidneys as well as the lungs
• Bronchoscopy: a thin, flexible tube passed through the mouth into the airways to look inside and to take a fluid sample (lavage)
• Lung function tests once you are stable, to measure how well your lungs are working
• Occasionally, a small sample of lung tissue (a biopsy)

What to expect at your appointment

Most of this testing happens in hospital and some of it can be tiring or uncomfortable. A bronchoscopy is usually done with sedation or a numbing spray, so it is not painful, though your throat may feel sore afterwards. Results often come in stages, and some antibody tests take several days. Waiting can be stressful, so ask your team what each test is for and when you can expect to hear back. You are allowed to ask questions and, where possible, to have someone with you.

Treatment

Treatment has two parts: supporting your breathing and stopping the bleeding, and treating whatever is causing it. Many people need to be in hospital at least at first, so their oxygen and blood levels can be watched closely. Because DAH is rare, you may be referred to a specialist centre.

Self-care at home

• Do not smoke, and avoid secondhand smoke. Ask for help to stop if you need it.
• Follow your team's advice about rest and about building activity back up slowly.
• Keep a simple note of your symptoms, such as breathlessness and any blood, so you can describe changes clearly.
• Take all medicines exactly as prescribed, and check with your doctor or pharmacist before stopping anything.
• Keep up with routine vaccinations, and ask your team about flu and pneumonia vaccines.
• Avoid inhaling smoke, strong fumes, or recreational drugs.
• Ask for and accept practical help at home while you recover.

Medical treatments

Doctors first make sure you are getting enough oxygen. You may be given oxygen through a mask or small tubes in the nose, and in severe cases a machine can help support your breathing. Blood tests are checked often, and a blood transfusion may be needed if you have lost a lot of blood. Treatment then targets the cause. If an autoimmune condition is responsible, doctors use medicines that calm or suppress the immune system, sometimes alongside a procedure that filters antibodies out of the blood (called plasma exchange). If an infection is the cause, it is treated directly. If a medicine is contributing, your doctor may adjust or change it, but never stop a prescribed medicine on your own. Some people need repeated treatment and long-term follow-up with a lung or autoimmune specialist.

When is surgery considered?

Surgery is rarely needed for DAH. In a small number of cases, a procedure called embolisation may be used. A specialist threads a thin tube into the blood vessels feeding the bleeding area and blocks them off. Very occasionally, surgery is needed to remove a badly damaged part of the lung. Your specialist team will explain whether any of these options apply to you, and what the risks and benefits are.

Living with this condition

Recovery varies a lot from person to person. Some people recover fully after treatment, while others need ongoing monitoring or long-term treatment for the underlying condition. You may feel more tired than usual for weeks or months, and breathlessness can take time to improve. Plan your days with rest built in, and build activity back up gradually. Keep all follow-up appointments, even when you feel well, because some causes of DAH can flare up quietly.

Lifestyle tips

• Stop smoking, and avoid smoky or dusty places.
• Keep your home well ventilated, and avoid strong chemical fumes.
• Wash your hands often, and take care around people with infections if your immune system is weakened.
• Keep a symptoms diary and a list of your medicines to bring to appointments.
• Ask your employer or school about adjustments while you recover.
• Tell any doctor, dentist, or pharmacist that you have had DAH.

Diet and exercise

There is no special diet for DAH, but eating well helps you recover and rebuild strength. Aim for regular balanced meals with plenty of vegetables, fruit, and protein, and drink enough fluids. If your appetite is poor, try smaller meals more often. Build exercise back slowly: short walks and gentle activity first, then more as you feel able. Ask your team before starting strenuous exercise, especially if you are still breathless or recently had a bleed. Breathing exercises and pulmonary rehabilitation (a supervised exercise and education programme for people with lung problems) can help some people regain fitness and confidence.

Mental health and emotional wellbeing

A sudden illness with bleeding and breathlessness can be frightening, and it is very common to feel anxious afterwards. You may worry every time you cough, or find it hard to sleep. Some people feel low for a while, especially if recovery is slow or you are waiting for test results. These feelings are understandable, and they usually ease with time and support. If anxiety or low mood is affecting your daily life, tell your healthcare team, because effective help is available. If you ever have thoughts of harming yourself, please contact your local emergency number or a crisis line in your country straight away, or go to your nearest emergency department.

Prevention

DAH itself usually cannot be prevented, because it is a sign of another condition. What you can do is reduce the chance of a flare-up being missed. If you have an autoimmune condition, keep up with your specialist reviews and follow your treatment plan. If you take a medicine that affects clotting, have your monitoring checks on time and report any unusual bleeding or bruising. Get medical advice early if you cough up blood or become newly breathless.

Vaccines

Keeping up to date with recommended vaccinations matters, especially if you take medicines that weaken the immune system. Ask your doctor or pharmacist which vaccines are advised for you. Depending on your age, health, and country, this often includes flu, pneumonia, and COVID-19 vaccines.

Screening programmes

There is no screening programme for DAH. If you have a condition known to be linked with it, such as certain autoimmune diseases, your specialist team will monitor your lungs and kidneys with regular check-ups and tests.

Complications

If left untreated

• Severe bleeding into the lungs, which can make it very hard to breathe
• Low oxygen levels in the blood, which can affect the heart and brain
• Anaemia (a low level of red blood cells) from ongoing blood loss
• Scarring of lung tissue, which can cause lasting breathlessness
• Kidney damage, in some autoimmune causes that affect both the lungs and the kidneys
• Respiratory failure, needing breathing support in hospital

Long-term outlook

DAH is serious and needs urgent care, but the outlook is far from hopeless. Many people recover well once the cause is found and treated, and some make a full recovery. Outcomes are best when the problem is recognised early and treated promptly. Some people need long-term treatment or monitoring, and a small number have lasting breathlessness. Your specialist team can give you the clearest picture for your own situation, and it is always reasonable to ask them about your outlook and what to expect.

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