After a stay in intensive care, some people experience physical, psychological and/or cognitive difficulties. These may appear immediately or several weeks or months after leaving hospital. This is known as Post-Intensive Care Syndrome (PICS). Its course varies from person to person and is difficult to predict: symptoms may improve, persist or change over time. If you think you may be experiencing any of these symptoms, speak to a healthcare professional. Appropriate support can reduce their impact on your quality of life and help you recover as fully and quickly as possible.
After a prolonged stay in intensive care, muscles that have barely been used may have wasted and need to be rebuilt, especially if your stay was long or you needed mechanical ventilation. When you wake up and during the weeks that follow, you will need to start using them again gradually. At first, the weakness can be extreme: simply sitting up may feel like an enormous effort, your first steps may be a major achievement, and rehabilitation can take a long time. Even so, strength returns little by little. Perseverance brings many satisfying and encouraging new “firsts”. Keeping a record of these milestones can help you stay positive on days when the task ahead feels overwhelming. It is normal to feel weak and tired at first.
This process may take anything from a few weeks to several months. Keeping a diary of your progress can help you see how far you have come, maintain your motivation and support your morale. If an ICU diary was kept for you, you can continue using it as a recovery diary.
Practical idea: When you start walking again after intensive care, Nordic walking poles may help you feel more confident. You could also ask someone close to accompany you with a small folding stool, like those used by artists or anglers, so that you can rest whenever needed.
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If you were admitted to intensive care because of a respiratory problem, it is common to remain short of breath after your stay, sometimes for several months or even years. Some after-effects improve greatly with physical rehabilitation; unfortunately, others may be permanent. Whatever your situation, regular rehabilitation tailored to your needs can help you recover some or all of your breathing capacity. Seek support from professionals who can help you achieve the best possible recovery. Physiotherapists can be particularly valuable for this type of difficulty.
Ask your GP, respiratory specialist or the intensive care team that treated you for advice on finding professionals who understand post-ICU recovery or your particular condition. Continuity is important, so it can be helpful to find someone who can support you throughout your rehabilitation. Take the time you need to find the right person.
It is also quite common for the lungs to remain vulnerable, sometimes in the long term. Ask your GP whether seasonal vaccinations would be appropriate for you, and seek advice if you become short of breath after what seems like a simple cold.
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The breathing tube used during intubation passes between the vocal cords. After it is removed, you may have a sore or dry throat, a weak or hoarse voice, or find that your voice sounds different. These symptoms usually improve within a few days.
If your voice does not return to normal, speak to your GP or the intensive care team. An assessment by an ear, nose and throat specialist may be useful, and sessions with a speech and language therapist can help in some cases.
You may also have difficulty swallowing food or drinks. Sometimes food, drink or saliva can enter the airway instead of the oesophagus; this is known as aspiration and can cause a chest infection. If you cough, choke or notice a “wet” voice while eating or drinking, tell a healthcare professional. A speech and language therapist can assess your swallowing and recommend suitable textures and techniques.
The tube may also have left a sore area at the corner of your mouth. This normally heals with time; a protective or healing lip balm may help.
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Your skin may be dry, sensitive or irritated after intensive care. Swelling and changes in blood circulation during your illness can also affect its appearance. Moisturising regularly and gently massaging the skin can help restore comfort and flexibility. Ask a healthcare professional for advice if you have persistent redness, pain or a wound.
Some people develop or notice a flare-up of eczema. Your GP or a dermatologist can recommend suitable treatment.
Temporary hair loss can occur several weeks or months after a serious illness. Although it can be distressing, the hair usually starts growing again naturally. Speak to your GP if the hair loss is severe or continues.
Your eyes may also feel dry or irritated. Artificial tears can provide relief; ask a pharmacist, GP or eye specialist for advice if symptoms persist.
You may have scars from a tracheostomy, central or arterial lines, drains or surgery. These marks can be difficult to accept because they are visible reminders of your illness and time in intensive care.
Once a wound has fully healed, gentle massage with a moisturiser can help soften the scar. Protect recent scars carefully from the sun. If a scar is painful, raised, tight or particularly distressing, speak to your GP; advice from a dermatologist or plastic surgeon may be helpful.
You may also notice bruises, especially if you received anticoagulant medicines to prevent blood clots. They generally fade gradually. Seek medical advice if bruising is extensive, appears without an obvious cause or is accompanied by bleeding.
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Your senses may be temporarily altered after intensive care. You may notice changes in taste or smell. Some medicines can leave a metallic taste in the mouth, which should disappear when the treatment ends. Many patients also report craving cold air or very cold foods, such as ice lollies, towards the end of their ICU stay or shortly afterwards. It is generally fine to enjoy these if they are compatible with any swallowing or dietary advice you have been given.
You may also notice temporary short-sightedness after spending a long time looking only across the limited distance of a hospital room, or unusual sensations such as tingling in the skin.
These sensory changes can be unsettling or stressful, but they are usually temporary. As you return to your usual environment and activities, your senses should gradually return to normal. If they have not improved after a few weeks, speak to your doctor.
Urinary catheters are very commonly used in intensive care to monitor kidney function accurately. After having a catheter for several weeks, and because of the loss of muscle strength, you may initially have difficulty controlling your bladder or experience leakage. This usually improves. If it has not improved after a few weeks, speak to your doctor. A urologist may recommend pelvic-floor physiotherapy to help you regain bladder control.
Be alert to possible signs of a urinary tract infection, including being unable to pass urine for several hours, a burning sensation when urinating, or blood in the urine.
Contact your GP promptly if you experience any of these symptoms, so that you can be assessed and treated if necessary.
After intensive care, it is not unusual to notice changes in your sex life. Your libido may increase or decrease, and you may experience physical or physiological difficulties. These changes can be linked to your emotional state, fatigue, your illness or the medicines you need.
There are many possible causes. Do not hesitate to raise the subject with your GP, who may not think to ask you about it. Support and effective treatments are available.
For some people, intensive care marks the beginning of life with a chronic condition: an illness that requires long-term or lifelong care, such as heart failure, chronic respiratory failure or diabetes.
Moving from feeling healthy and able to take your body for granted to living with a chronic illness can be difficult, whatever the condition. It can help to build a trusted team of medical, nursing and allied health specialists who understand the condition, can minimise its impact on your daily life and help you access the best possible care. You are entitled to seek more than one opinion and to build the team that is right for you.
You can also contact a patient organisation for your condition. These organisations can be invaluable sources of information, practical advice and peer support. In France, a list is available from France Assos Santé.
Psychological support can also be very helpful. In France, many chronic conditions may qualify for the Affection Longue Durée (ALD) scheme, which provides enhanced coverage for care related to the condition. While your GP arranges this, you may also be eligible for the government’s Mon soutien psy programme, which reimburses a number of sessions with a psychologist each year.
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