After having ECMO

We gave you ECMO because you were seriously ill with lung failure and did not respond to other methods to help you breathe.

The staff from the intensive care unit looked after you. They gave you powerful painkillers and sedatives (medicine with a calming effect). You might not remember everything that happened during this time.

Complications during or after ECMO

As with any treatment when you are very sick, ECMO does have complications.

This section lists some of the more common problems. If you have any concerns about your health after ECMO, please speak to your GP or contact us.

Breathing (respiratory) difficulties

After having severe respiratory failure, your breathing can take more than 1 year to return to normal. You are likely to feel breathless when you exercise (even if walking or doing other light exercise). You might also keep coughing. These problems should improve with time.

During ECMO, you had a breathing tube through your mouth or the front of your throat (tracheostomy). You might have a hoarse voice or breathing problems because your windpipe (trachea) has become more narrow. Hoarseness means that your voice might sound breathy, raspy or strained, or is softer in volume or lower in pitch. Your throat might feel scratchy.

Problems like hoarseness might get better with time. If these problems continue, your GP can refer you to an ear, nose and throat (ENT) surgeon.

Scarring

After ECMO, you have scars over your groin or neck. These are the places where we put in tubes (cannulas) to pass your blood through the ECMO machine.

For most people, the scars become less obvious with time. If you are concerned about how your scars look and this problem does not get better, your GP can arrange for you to see a plastic surgeon. They can do a procedure to improve or reduce the appearance of scars (scar revision surgery).

Some people get lumps with a pulse in them (pseudoaneurysms). This is when the wall of a blood vessel is injured and the leaking blood collects in the surrounding tissue. You are more likely to get a pseudoaneurysm if you had a tube in an artery. A specialist in blood vessels (a vascular surgeon) needs to examine you urgently.

Bleeding

We used strong blood-thinning medicines to allow your blood to run through the ECMO machine. You might have bled as a result of this and probably had a blood transfusion (when we gave you blood from someone else).

Blood transfusion in the UK is very safe. You are unlikely to have any permanent problems. Staff controlled the bleeding and it's unlikely to happen again.

If you bled into your brain, you might have symptoms of a stroke like weakness on one side of your body. This might improve with time.

Emotional (psychological) wellbeing and mental health

As people on ECMO have been so unwell, conditions affecting the mood like depression are common afterwards. It is also common to have flashbacks, which can be distressing. Flashbacks are when you relive experiences as if they're real or happening right now. This is called post-traumatic stress disorder (PTSD).

Please speak to your GP if you have problems with your emotional wellbeing.

Other problems

When you were on ECMO, you stayed in bed for a long time. Although you were on a special bed, you might have damage to an area of skin caused by constant pressure on it (pressure sores).

Many pressure sores need special dressings, but they usually heal with time. Sometimes, people need surgery to treat them.

You are also likely to need rehabilitation because of muscle weakness. This is very common and can take years to improve.

Other problems, such as changes in your sense of taste, are common after critical illness. They usually improve with time.

Follow-up appointments

About 3 to 6 months after you leave hospital, we contact you to see how you are. We send you questionnaires to ask about any problems that you have. We might also ask you and your family to tell us what you thought about your care in hospital.

Your GP arranges your follow-up and ongoing care. However, you are welcome to come back and speak with the ECMO team at any time. Please contact us for an appointment.