How to manage Breathlessness for PAH

Breathlessness is one of the most common symptoms for people living with PAH. It can be frightening when you feel like you can’t get enough air into your lungs.  

We spoke with Dr David Michail (Respiratory and Sleep Physician) about ways in which you can manage your breathlessness. Watch the webinar video or read more below. 

How to manage breathlessness? 

Breathlessness is affected by your lung function, the way you breathe, your lifestyle and your emotion and memories associated with breathing. Although there is currently no cure for PAH, effective self-management is important to help improve how you feel. As the magnitude of breathlessness increases, your healthcare provider will start looking at pharmacological and non-pharmacological approaches to assist you. Your pulmonary arterial hypertension clinic will provide you with disease specific therapies depending on the severity of your shortness of breath. 

Pharmacological therapy  

There are several different medications that are specifically for PAH patients to help open up the blood vessels of the lung, improve blood flow and reduce the strain on your heart. These are usually taken as tablets by mouth but can also be given via a needle into the vein, under the skin or breathed in as a mist. You may need more than one medication.  

Handheld fan

Many people find using a battery-operated fan can help control breathlessness, research has shown that a cool draft of air from a hand-held fan can be highly effective. It works by circulating cool, fast air over the face which helps to reduce breathlessness.  

Exercise & physical activity 

It may be hard to know how much or what type of exercise is possible with PAH. With help from your specialist doctor, you can work out what is right for you. Do not start an exercise program without discussing this with your specialist. Choose activities that you enjoy and that make you feel good. Exercise helps people living with PAH by improving the efficiency of muscle function, reverses deconditioning and desensitises the patient to breathlessness.  

Breathing techniques and positioning 

There are many different breathing and positioning techniques that can enhance your breathing.  

Breathing control

Breathing control promotes efficient breathing patterns and deters hyperventilation. A technique that may assist with your breathlessness is relaxed breathing. 

Relaxed breathing technique

1. Watch your stomach rise as you breathe in 

2. Relax your stomach as you let yourself breathe out  

3. Concentrate on the breath out, the in breath will take care of itself 

You can visualise this technique by imagining yourself breathing around a rectangle. Focus on taking long, slow breaths whilst letting the air completely out followed by a short breath in.  

Paced breathing

This breathing technique is where you use the rhythm of your footsteps to pace your breathing. You may have one step to breathe in and a couple to breathe out, for example:  

1. Breathe in on your left foot 

2. Take a couple of steps 

3. Breathe out on your right foot 

Pulsed lip breathing 

Imagine yourself smelling roses on your breath in and then pursing your lips together as you exhale, imagining that as you are blowing out a candle. Pulsed lip breathing helps to give positive end respiratory pressure on the breath out. This pressure helps keep the airways open a little longer to remove the air in your lungs. 

Breathing positions – lean forward 

Sitting forward and relaxing your shoulders can maximise breathing reduction and reduce the effort of breathing. You may be in a chair or against a table with some pillow support.  

Psychological interventions 

Relaxation  

When you start to feel breathless, you may be reminded of negative memories from previous breathing episodes which may make you feel more anxious. Psychological support is available for you to help teach you to progressively relax the muscles in your body using meditation or guided imagery.  

Psychological counselling and support  

Support is often provided in nurse led clinics or with home visits by a trained respiratory or cardiac nurse. There is evidence that cognitive behavioural therapy and mindfulness techniques have a role in managing breathlessness and that they should be included in a multi-modality intervention. If you are unable to access support through your treating team, you could ask your GP about a Mental Health Care Plan which provides you with fee-subsidised visits to a psychologist.  

Graded exposure  

Graded exposure is needed when you tend to avoid an activity or situation because you have associated it with a previous negative experience. Graded exposure will help you accept your feelings and work towards a goal. For example, you may start by walking up a quarter of a hill instead of the whole hill. You would undertake this type of exposure with the guidance of your treating team or psychologist.  

Tips for anxiety management 

When you start to feel breathless, you may set up negative breathing loops contributing to feelings of panic. Try out these tips to help you manage your anxiety:  

• Slow your breathing down 
• Try and relax 
• Stay in the moment 
• Do a small act of bravery 
• Challenge that ‘little voice’ 
• Plan ‘worry time’  

Nutrition 

A balanced and well-nourished diet helps your body to better fight infections, flare-ups, and daily symptoms. Even minor illnesses or sickness such as common colds can worsen PAH symptoms. Because everyone is different, there is no set diet to help to reduce PAH symptoms. Eating well will also keep your energy levels up. 

 Common suggestions for a healthy diet may be:  

• Change to a low salt diet (salt causes you to retain water, which may worsen any swelling or oedema you have)  
• Avoid packaged and prepared food as these often contain hidden salt (also called sodium), fats and sugar. You can see a dietitian to find out which foods are high in salt  
• Eat small, more frequent meals  
• Eat fresh fruit, vegetables, and whole grains  
• Eat fish and lean meat, such as chicken  
• Reduce alcohol intake. 

Some foods and drinks can affect medications, so you need to check with your specialist or pharmacist if there is anything you should avoid. If you notice any significant weight loss or gain, tell your specialist. 

Oxygen

People with low levels of oxygen in the bloodstream will benefit from home oxygen therapy. Home oxygen therapy will increase the amount of oxygen in your blood and therefore the amount of oxygen getting to your vital organs. Your doctor will perform tests to decide whether you will benefit from having additional oxygen. Not all breathlessness is caused by low oxygen levels, there can be many other causes of breathlessness. 

Download our Living With Pulmonary Arterial Hypertension booklet for more self-management strategies to help you stay well.