What to Expect Following ICU Discharge

picture of icu

 

This page contains advice and information about intensive care. It tells you how critical illness may be treated and what recovery may be like. Not every patient will experience all of these things, but they are more likely to if they have been in intensive care for more than a few days. Most of this page is written for patients but there is a section specifically for relatives and visitors. By reading this, relatives will learn what a patientʼs recovery may involve and it will give them the answers to some of the questions they may have.

Recovery is often a long and slow process. To begin with, patients may not feel up to reading this information, so if you are a relative, please keep hold of this information and pass it on when the patient is ready.

One of the scariest things about having a critical illness is not knowing whatʼs going to happen. This information canʼt answer all your questions, but it will answer many of them. It will try to tell you what may happen and where you can find out more information.

Each section covers a different stage of the process of treatment and recovery. You can read it all in one go, or you can just read each section when you need to.

Some ICUs may offer post ICU support groups to patients, caregivers and family members. If this is offered by your ICU, you may be invited to participate. If you are unsure if it is offered in your ICU, ask the unit clerk, nurse, social worker or doctor.

This information was produced by ICUsteps, a charity that supports intensive care patients. It has been written by people who have either been treated in an intensive care unit or are close relatives of someone who has. It has also been reviewed by a wide variety of intensive care professionals. Visit their website, www.icusteps.org , where you can learn more information and send any comments using the ʻcontact usʼ form or by e-mailing contact@icusteps.org.

 

Your Time in the ICU

When youʼve been critically ill and you have been asleep for long periods because you were unconscious or sedated, you may have difficulty remembering what happened to you. Also, you may have had vivid dreams, nightmares or hallucinations which upset you.

You may even believe that staff were trying to hurt you, because of the treatments you were given to make you better. These things are normal for someone who has been critically ill and can be caused by the illness or the drugs used to treat it. You may find it difficult, but it can help to talk to someone you trust about this and it really is nothing to be ashamed or embarrassed about.

Below is some information about some of the things that happen in an intensive care unit. It may help you make sense of things you remember.

Planning for your recovery

After being critically ill, it may take you several months to recover. The staff may carry out health checks to find any likely physical or psychological problems you may face because of your illness. If they think you are at risk of having problems later in your recovery, they may carry out more checks:

  • before you leave the ICU
  • before youʼre discharged from hospital and
  • after youʼve been out of the ICU for two to three months.

Depending on the results of these checks, the intensive care staff may prepare a rehabilitation plan for you. What is in this plan will depend on how long you were in intensive care and your needs, but may include information on:

  • the difference between intensive care and ward-based care
  • the physical, dietary or medical needs you are likely to have in the future and
  • who will be responsible for your care when you are in the hospital and when you leave.

When you leave the ICU

Before you leave the ICU

As you start to get better, you will not need the machines that were helping to support your bodyʼs normal functions and monitoring your condition. The  physiotherapist will probably give you exercises to help strengthen your muscles to get you moving around again. You will be very weak and get tired easily at first.

As you become able to do more for yourself, you may be moved to a different section of the ICU or transferred to another ward in the hospital with a reduced level of nursing.

Many hospitals have high dependency units (HDU), where each nurse will normally look after two or three patients. Some hospitals might send patients from the ICU to the HDU as they get better, until theyʼre well enough to go to a general ward.

Moving to a general ward in the hospital

This can be a difficult time for patients and relatives because there is no longer the one-to-one nursing that there was in the early stages, but you are still far from being well. You may need to re-learn how to do simple things such as walking, eating, drinking, or even breathing for yourself. This can be frightening but is normal at this time in your recovery.

When you move to a ward, there will be a written plan that includes:

  • a summary of your care and treatment while you were in the ICU
  • a monitoring plan to make sure you continue to recover
  • a plan for ongoing treatment and
  • details of your physical and psychological rehabilitation needs.

From this time you will be cared for by the ward staff, but they will be able to talk to the ICU staff if they need to. If the hospital has an ʻOutreachʼ service, you may be visited by an ICU nurse while youʼre on the ward to check on your progress.

The visiting times in a general ward may not be as flexible as they are in the ICU and you may be disturbed more by other patients and visitors around you. Your normal sleep pattern may be upset due to the constant activity while you were in the ICU. This does return to normal in time. Rest when you can. You may find that a personal music player with headphones helps you to relax and pass the time.

Returning home – what will life be like now?

When you leave the hospital

Leaving hospital and returning home is a major step in your recovery and is likely to have been a goal youʼve been working towards for some time. It is a very positive step but it will take time and effort to get back to a normal life.

Before you leave hospital, your physiotherapist may give you an exercise plan to help with your recovery. If not, you (or a friend or relative) can ask them for a plan.

When youʼre well enough to leave hospital, you may have an assessment to find any difficulties you might face when you get home. This would include psychological or emotional problems, as well as any care and equipment you need. Your healthcare team should discuss and agree with you what your rehabilitation goals are (what you want to achieve as you get better), and organise any referrals and any other care or rehabilitation you will need before you leave the hospital.

When you leave the hospital, you may be given:

  • a letter that summarises your time and treatment in ICU (this is called an ʻICU discharge summaryʼ)
  • the contact details of the person co-ordinating your rehabilitation and
  • if appropriate, a copy of your rehabilitation plan.

When you get home

You wonʼt have the same support you had in hospital and it can be a difficult time for you and for your relatives. Itʼs normal to go through times where you feel depressed or frustrated because you donʼt seem to be getting better. Setting small goals in your daily routine can help you recover and show you that you are improving. A small goal could be something as simple as making a drink for yourself, or walking a few steps further without needing to rest. Donʼt push yourself too hard as this can end up making your recovery take longer.

When youʼve been critically ill, youʼll probably feel very tired and wonʼt have much energy. It will take time before you feel well enough to cope with everyday life and many more months to get back to full strength.

Set yourself targets to help you get back to normal, and keep doing the exercises your physiotherapist gave you. Donʼt overdo your exercise as this can set your recovery back.

You will need to slowly increase your activity to build up your strength, but make sure that you rest when you need to. In the early days you may need to take things very slowly.

If youʼve had an operation, you must follow your surgeonʼs advice. Your body will tell you if itʼs getting tired or is in pain. If you feel unwell or get out of breath, stop what youʼre doing and rest.

Checking up on your recovery

A member of your healthcare team may offer to meet with you two to three months after you left the ICU. The meeting will be to discuss any physical, psychological or other problems youʼve had since you left hospital.

If youʼre recovering more slowly than expected, they should be able to refer you to the appropriate rehabilitation service.

Who to ask for help

When youʼre back home, your family doctor will be involved in your general care and recovery. For most people, your family doctor will be involved with the hospitalʼs medical staff in looking after you after your critical illness. They should be able to refer you to other services if you need them, such as community-based physiotherapy.

If your family doctor isnʼt able to help, you can always contact the ICU where you were treated. Before you left the hospital you may have been given the contact details for a person in the ICU who can help.

Social life and hobbies

When youʼve been seriously ill, you may feel differently about things and you may not want to do things you used to enjoy. For example, you may not feel like seeing lots of people at once, so start by seeing one or two friends at a time for short periods.

You may find it difficult to concentrate and may even find it hard to follow a TV programme. Your concentration will get better. During your recovery you may be forgetful, but your memory will usually improve as you get better.

Your recovery may take a long time and, as you get better and begin to do more, you may find that things get on top of you. During this time you may lack confidence, worry about your recovery, or even feel depressed. Talking about this to your family or a close friend can help.

Relationship and family

After youʼve been critically ill, you and the people around you may seem to change. Your family may make a fuss and might not understand why you seem different, or why you arenʼt keen on the hobbies and interests you used to enjoy.

Your family and friends were afraid you might die, so they may want to do everything for you when you get home. If this annoys you, talk to them calmly about how you feel. Donʼt bottle things up and get angry.

You may not remember your time in hospital clearly, and this can be confusing and frightening. It may help to talk to your family about what they remember about your stay in hospital, how they felt when you were ill and the things that happened while you were there. If your relative kept a diary while you were in the ICU, it can be helpful to look at this with them.

Getting back to your daily routine

Lots of people worry about coming home from hospital or returning to work after a critical illness. Itʼs normal to wonder whether youʼll be able to cope.

Talk about it with your family and think about how you can adapt things at home to help you.

If you used to work, you may not be well enough to return full-time straight away. When youʼre feeling better, itʼs a good idea to arrange to go back and see your colleagues and talk to your boss. Depending on your job, you may be able to do a few hours a day at first.

If you have young children you may feel under even greater pressure to get back to normal. Do the important things first – other jobs can wait. Take a nap at the same time as the children and donʼt be afraid to ask your friends and family for help.

Sexual relationships during critical illness

Itʻs normal to be worried about when itʼs safe to start having sex again. Your partner is likely to be worried about this too.

You may be concerned about the following.

  • Will my scars be healed enough?
  • If I have to use a medical device, such as a colostomy bag, catheter or pacemaker, will it get in the way?
  • Will I hurt or ache too much?
  • Will I have the strength?
  • What if my partner doesnʼt want to have sex?
  • What if I canʼt continue or canʼt reach an orgasm?

You may worry because you donʼt know what will happen. If youʼre worried about your strength, compare the energy needed for sex with the energy you need for your exercises. If youʼre coping well with your exercises, you may be able to cope with sex.

Most people find it difficult to talk about sex, but try to relax and keep a sense of humour. Cuddles are really important. Take things slowly and see what happens.

Sometimes, medical problems such as impotence (being unable to get and keep an erection) can affect your sex life. If youʼre worried, talk to your family doctor.

How a critical illness can affect your body

Weakness and weight loss

Donʼt be surprised if you feel very tired and weak at first. Your muscles will have lost strength while you were ill and not active. The longer you were ill for, the more your muscles will have weakened. This muscle loss happens faster for patients who have been on a breathing machine.

You may also have lost a lot of weight because of this muscle loss. You will put weight on again as you begin to get better and exercise.

You will get stronger, but it will take time. Physical recovery will be measured in months rather than weeks, and it may take up to 18 months for you to feel fully better. Set yourself realistic goals. Keeping a diary that you can read at times when you donʼt feel so well can make you realise how much progress you are making.

Even if you donʼt make a full recovery, you can still achieve a lot and live a full life. There are people who have been critically ill for months, and a year later, youʼd never know what theyʼd been through. Try to stay positive, even if it means making some changes to the way you live.

Breathing

You may have needed to have a tracheostomy. This is a procedure to make a hole in your throat and insert a tube, which is connected to a ventilator (a breathing machine). The tracheostomy makes it easier for you to breathe and to reduce your bodyʼs need for the ventilator. If you had one of these you will have a scar on your neck where the tube was inserted. The scar will gradually fade and become less obvious.

Keep doing the breathing exercises the physiotherapist gave you to strengthen the muscles and reduce the risk of chest infection.

Your voice

If youʼve had help with your breathing, your voice may have changed. At first your throat may be sore so donʼt strain your voice. Try to relax as much as you can when you speak, and drink plenty of water. You may have marks at the corners of your mouth caused by the tape used to keep your breathing tube in place. You may also have a dry mouth caused by a lack of saliva.

Your skin and hair

Your skin may be dry or itchy after your illness. Moisturising it regularly can help stop this. You may notice changes to your hair and some of it may fall out. This is not unusual and can even happen months after you leave hospital. It usually grows back but it may be more curly, straight or thin, or a different colour from how it was before.

Bruising

If you were on a drip or had other tubes in you, you may have bruises and scars. These are usually on your hands, arms, wrists, neck, groin or sides of your chest. You may also have bruises on your stomach because of injections to stop your blood from getting clots.

Changes to your hearing, taste, touch and sense of smell

Your senses may be affected by your stay in the ICU, but the effects donʼt usually last for very long. Your hearing, sight, taste, touch and sense of smell may have changed, which can be upsetting.

Some of the drugs you may have to take can affect your hearing. Other types of drugs can leave a metallic taste in your mouth.

You may have been fed through a tube into your stomach, or by a drip into your veins. When you begin to eat and drink normally again, food may taste stronger or just different. Your sense of smell may also be affected because it is closely linked to your sense of taste.

You may have sore, dry eyes because you were sedated for a long time, or your eyes may be puffy and swollen because of the fluids you were given to keep you hydrated.

Things that touch your skin may feel odd and you may experience tingling in parts of your body. This can be caused by some of the drugs you were given or by your bodyʼs reaction to your illness.

These changes are usually temporary and should disappear over time.

Problems going to the toilet

When you were in the ICU, a doctor may have put a tube in your bladder. This is called a urinary catheter. It drains urine from your bladder and allows the staff to check your fluid levels. When the tube is taken out, your muscles may be weaker so you may find it difficult to control your bladder. Donʼt worry, this usually returns to normal.

If you have problems urinating, you may have an infection, so see your doctor or a nurse as soon as possible. Symptoms include:

  • not being able to pass urine for several hours
  • having a burning pain while urinating and
  • blood in your urine.

Sometimes medication can change the amount and colour of your urine. It may even affect how often you go to the toilet. The medication may also affect your bowel movements.

If youʼre worried about any of these things, talk to your doctor about them.

Smoking

If you smoked before your illness, now is an ideal time to give up. If you stopped smoking while you were in hospital, donʼt start again when you are at home. If you have been critically ill and on a ventilator, smoking can damage and weaken your lungs even further.

How I might feel after being in the ICU

After being critically ill, it may take up to 18 months for you to fully recover.

Being weak and having to put a lot of effort into doing simple things, such as getting dressed and moving about, can make you feel low for a while. You can also feel like youʼve lost your independence if you need a lot of help from other people at this early stage.

Your mood may change often and you may experience some of the following.

  • Feeling upset and tearful
  • Always feeling tired
  • Not being able to sleep properly
  • Not caring what you look like
  • Being quick-tempered and snappy
  • Feeling guilty for causing so much trouble and worry
  • Forgetting things
  • Not feeling hungry
  • Not understanding what has happened to you and how ill you have been
  • Feeling scared that you almost died
  • Worrying about getting ill again
  • Worrying about how long itʼs taking to recover

Your family and friends will be pleased to have you home, but they may not understand why you may feel sad. Talk to them about how you feel. Also, go to see your family doctor who may be able to offer you treatment or counselling to help you through this difficult time.

As you get better and start doing more, you will face new challenges. They can make you feel scared – try to keep calm and take slow, deep breaths.

After you have left the ICU you may experience a number of psychological symptoms. They could include the following.

  • Vivid dreams
  • Nightmares
  • Flashbacks (suddenly remembering, in vivid detail, a past experience)
  • Hallucinations
  • Anxiety
  • A loss of confidence

Sometimes these symptoms can be triggered by a sound, smell or something you see. These usually disappear over time.

Sleep

You need regular sleep to keep your body healthy. It can take time to get back into a normal sleep routine. You may find it harder to fall asleep, or you may often wake during the night. If you have trouble sleeping, try a milky bedtime drink but avoid tea and coffee as the caffeine in them can keep you awake. Reading or listening to the radio before you go to sleep may also help. Your family doctor can give you advice if you have trouble sleeping, but things should return to normal as you become stronger and more active.

Understanding what has happened to you

People feel differently about their time in intensive care. For some the experience is no more worrying than any other stay in hospital. Some have no clear memory of it, or they may try to forget it. For others, being so ill can be a very traumatic experience and it may take time for them to come to terms with it afterwards.

The strong drugs and the treatment the ICU staff had to give you to help support your body, will have affected your body and mind. It is common for patients in an ICU to experience hallucinations, nightmares or dreams that can seem real and very frightening. At times, you may have felt slightly aware, but didnʼt know where you were or what was happening.

Hallucinations and paranoia

Itʼs common for patients in an ICU to have hallucinations or nightmares. You may have had dreams or feelings of being tortured, trapped in bed or felt as if you were being held captive. This was probably caused by having drip lines and catheters inserted into your body to help support your bodyʼs normal functions and monitor your condition. The fear this causes can remain for weeks after you have been transferred to a general ward or discharged from hospital.

You may also have felt some paranoia as you tried to make sense of things when you were confused. This too normally passes with time. If going back to hospital for a followup appointment frightens you, take along someone you trust to reassure you.

In a few cases, patients (and their relatives) can have extreme symptoms of stress after their treatment in the ICU. This is known as post-traumatic stress disorder (PTSD), and is rare. Most people who have suffered from PTSD found that talking to a professional counsellor about their stay in hospital helps. You can ask your family doctor to refer you for counselling.

Things that may help you get over what happened

After leaving hospital you may have questions about your stay in the ICU. Some hospitals offer a follow-up clinic. This usually involves being invited back to the ICU you were in to look around, see some of the staff who looked after you and find out more about what happened to you. The idea of going back to the unit can be frightening and it may be some time until you feel ready to do it. However, it can be very helpful to see where you were and find out more about what happened to you.

You wonʼt remember everything that happened to you in the ICU. Writing down what you can remember may help you to collect together your memories. You could try to remember something about each day you were in hospital to help make sense of the time you lost. It may help to ask your family and friends what they remember about it.

If your relatives or visitors kept a diary while you were in the ICU, reading it can help you understand what happened. It may take a while before you feel ready to read it, and it can be very emotional, but many patients who have read their relativeʼs diary find it helps them understand what happened.

If it helps, take the time to understand the medical side of what happened to you. Staff at the follow-up clinic will be able to help with this or you can ask your family doctor about it.

Eating well to get better

While you were in intensive care you will have received your food as a liquid. You may have been fed through a tube inserted into your nose and down into your stomach, or by a drip straight into your vein. Your body will have used its stored fat and muscle for energy to help fight your illness.

You may have difficulty eating because:

  • you donʼt feel hungry
  • your mouth is too sore to eat
  • food tastes different
  • it hurts to swallow.

Try starting off with small portions and eating more often throughout the day. Instead of having full meals, have small meals and two or three snacks each day. You can buy specially prepared milk drinks and desserts, like the ones you were given in hospital, which contain lots of vitamins and minerals.

Take your time when eating and relax afterwards to avoid indigestion.

If some foods taste very salty or sweet it is likely that your taste buds are taking time to get back to normal. This is common and will soon improve – donʼt add extra salt or sugar to your food.

If you enjoy drinking alcohol, check with your doctor that it is safe to drink it with the medication you are taking and that it will not have a bad effect on your condition. Even if it is safe, donʼt drink too much.

Sometimes, taking strong antibiotics and steroids can lead to infections, such as oral candida (thrush in your mouth), which can give you a thick white substance on the roof of your mouth and tongue, making it painful to swallow. If you think you might have thrush, your family doctor will be able to treat it easily.

During your recovery you must make sure you drink enough. Take care not to become dehydrated. Dehydration can:

  • dry out your skin
  • make you produce less urine, which can have a bad effect on your kidneys
  • make you feel very weak and tired.

Drink regularly throughout the day so you donʼt become dehydrated. You can have hot drinks as well.

If you need more support or have symptoms that youʼre worried about, you should see your family doctor. You should also talk to your family doctor if:

  • you have trouble getting back to your normal weight
  • your bowel movements donʼt return to normal
  • there is blood in your urine
  • you get severe indigestion.

Your family doctor may be able to offer you advice or refer you to a dietician.