After having ECMO

We give people ECMO because they are seriously ill with lung failure, and have not responded to other methods to help them breathe.

The staff from the intensive care unit look after patients on ECMO. They give powerful painkillers and sedatives (medicine with a calming effect). Patients might not remember everything that happens during this time.

Complications during ECMO and recovering fromECMO

As with any treatment when you are very sick, ECMO does have complications. As well as problems that relate to having ECMO, it is common to get some health problems as a result of being critically ill. This is called post-intensive care syndrome (PICS). PICS symptoms can start in ICU and may continue after you leave hospital.

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 a year to return to normal. You are likely to feel breathless when you exercise (even just 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 narrower. Hoarseness means that your voice might sound breathy, raspy or strained, or is quieter, or lower in pitch. Your throat might feel scratchy too.

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.

ICU-acquired weakness

Most patients lose muscle mass while they are in bed, which can cause weakness, balance issues, and falls. It might be difficult to walk or climb stairs, and return to your normal activity levels. Some patients need ongoing physiotherapy (rehabilitation) after leaving hospital. Muscle weakness can take months or years to improve.

Scarring

After ECMO, you will have scars over your groin or neck. These are the places where we put in the tubes (cannulas) to pass your blood through the ECMO machine. Stitches are left behind in the skin immediately after the ECMO tube removal, to help the skin to heal. These need to be removed 10 days after coming off ECMO. Sometimes a small piece of a stitch might be left under the skin, and it can cause pain, inflammation or infection. This might need antibiotics and medical review.

For most people, the scars become less obvious with time. If you are concerned about how your scars look, and they do not improve, your GP can refer you to a plastic surgeon. They might be able 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 (vascular surgeon) needs to examine you urgently.

Bleeding

We use 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 control any bleeding and it's unlikely to happen again.

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

Blood clots

Blood clots in the leg can be common after ECMO, due to the large tubes partially blocking the flow of blood. If you have had a clot, you will be started on a blood-thinning medicine, and you might need to visit the thrombosis clinic for monitoring.

Emotional (psychological) wellbeing

Psychological symptoms after critical illness are very common. These can include feeling low in mood, tearful, anxious, and short tempered. It is also common to have:

• vivid memories from ICU
• ongoing dreams or nightmares
• flashbacks

These can be upsetting and make it difficult to sleep or socialise.

For most people these symptoms improve with time, however they continue for some people. It can be helpful to talk to trusted family members or friends about how you are feeling, so that they can support you. You can also visit your GP to help manage these symptoms, and they can refer you for specialist counselling or treatment if needed.

Cognitive symptoms

Many patients suffer with cognitive (thinking) difficulties after spending time in an intensive care unit (ICU). This can cause:

• forgetfulness
• difficulty in concentrating and focusing
• challenges finding the right words in conversation

These problems can make it more difficult to return to work, and to organise things like appointments. Cognitive symptoms usually improve with time, but speak to your GP if they do not improve, or continue to impact your daily activities.

Other problems

When you are on ECMO, you stay in bed for a long time. Although you are on a special bed, you might have damage to some skin because of the 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.

Some other common problems include:

• hair loss
• taste changes
• weight loss
• changes to bladder or bowel function
• swallowing difficulties

Patients can struggle with sleep, and find it difficult to return to normal activities such as work, socialising, leisure, and sexual function. Most symptoms improve with time, however, if they continue, you should get advice from your GP or your ICU recovery team

Help after returning home

All patients who have ECMO will be given an appointment in the post-critical care recovery clinic, for 3 to 4 months after leaving hospital. This is a clinic with specialists from different teams, who want to understand any problems you are having, and provide advice, recommendations and referrals to help.

The post-critical care recovery clinic is mostly virtual (online, via Microsoft Teams). If you cannot do a video call, we can call you on the phone, or you could visit the clinic in person at St Thomas’ Hospital.

A relative, friend or carer can join the appointment if it is helpful for you. Support is available for your relatives if they are struggling with upsetting thoughts relating to your time in ICU.

Peer support group

Patients and relatives often feel isolated, and it can help to talk to other people who have been through a similar experiences. We run an online peer support group every month, to allow you to meet and talk to other ICU survivors. You will be invited to this after you have had your appointment with the post-critical care recovery clinic.