ABOUT SEPSIS

WHY DOES SEPSIS HAPPEN?

Sepsis is caused by the way the body responds to micro-organisms such as bacteria getting into your body. This infection could have started anywhere in your body. The infection may only be located in one part of your body or it could be widespread. It could have come from some of the following:-

A chest infection causing pneumonia

A urine infection in the bladder

A problem in the abdomen, such as a burst ulcer or a hole in the bowel

An infected cut or bite

A wound

Sepsis can be caused by a large variety of different bacteria such as streptococcus, E-coli, MRSA, C diff. Most cases of sepsis are caused by common bacteria which we all come into contact with every day without them making us ill.

Unfortunately, the body can respond abnormally to these infections sometimes and this causes sepsis.

 

DIFFERENT TYPES OF SEPSIS

People get infections all the time which can make them feel ill but they soon get better without needing any hospital treatment. Sepsis can develop following a chest infection, urine infections and other minor illnesses.

However, other patients can develop sepsis, which means they can become seriously ill and need to be treated in hospital immediately.

WHO IS AT RISK OF GETTING SEPSIS?

We don't always know why the body responds in this way and often people who get sepsis are in good health and do not actually have any long term illness's. People are more likely to develop sepsis after a viral illness like a cold or a minor injury.

However there are some groups of people who are more likely to sepsis, such as if you:

Are very young or very old

Are diabetic

Are on long-term steroids or on drugs to treat cancer (chemotherapy)

Have had a organ transplant and are on anti-rejection drugs

Are malnourished (your body hasn't had enough food)

Have serious liver disease

Have a serious illness which affects your immune system (the way your body protects itself from infection), for example leukaemia

Have an infection or a complication after an operation

Are pregnant or have just given birth

WHAT SEPSIS DOES TO YOUR BODY

To start with, you may feel like you are developing flu-like illness. You may have:

Felt very cold and shivery

Felt very hot and looked flushed

Had a high temperature

Had aching muscles

Felt very tired

Have had sickness and/or diarrhoea (upset stomach)

Not felt like eating

Seemed confused or drunk, or had slurred speech

 

As your condition deteriorated:

Your blood pressure might have dropped because your illness caused your arteries and veins to become larger. Your blood had a bigger space to fill and so your body struggled to keep your blood pressure at a normal level

Your heart tried to help by beating faster

You might have felt breathless and/or were breathing very quickly

Your skin might have been cold and pale, have had an unusual colour or rash, or it might have been mottled (marked in 'patterns' or patchy in colour)

Your skin might have been hot and flushed

Depending on where the infection began, you would have also had other symptoms. For example if you had pneumonia you would have probably had a bad cough as well.

 

As the sepsis progressed, you blood pressure might have become very low and this would mean that:

Your organs will not have got enough blood and oxygen. This will have damaged the cells in the organs causing them to fail. The kidneys, lungs, brain and heart are particularly at risk from this

You won't have needed to pass water as much as you normally do

You may have found it very difficult to breathe

Your skin may have darkened in patches and begun to blister

You may have become very confused and you might have become unconscious

You may have swollen up with fluid which would have made you much bigger than your normal size and meant you would have looked very different. This may well have been frightening for you and your relatives to see. This swelling happens because your blood vessels become leaky and fluid goes to the wrong places and can leak out of your skin.

 

By this time you will have needed urgent medical help and will probably have been taken to a Critical Care Unit (also known as an Intensive Care Unit) in hospital.

TREATMENT OF SEPSIS

WHY DID I NEED TO GO TO THE CRITICAL CARE UNIT?

Critical Care is where the most ill patients in a hospital are treated and nursed.

In Critical Care:

You can be carefully watched and monitored, including checking your pulse, blood pressure, breathing, oxygen levels, how much liquid you take in and how much you much water you pass. These checks are all very important because staff can quickly change your treatment as needed.

Staff can give you treatment including support for your major organs, like your heart, kidneys and lungs.

There are highly trained doctors, nurses and physiotherapists who look after you and support your relatives by explaining exactly what is happening.

Nurses look after fewer patients so there may be one nurse looking after only one or two patients.

WHAT TREATMENT MIGHT I HAVE HAD

Sepsis is treated by:

Giving you strong drugs to help you beat the infection. These include antibiotics, anti fungal or anti viral drugs depending on what caused the infection in the first place. Sometimes it can be necessary for the medical team to try different drugs to find the ones that will be best to treat your illness and you may well have got worse or better as the new drugs have been introduced.

Supporting your body's organs until they can begin to recover. This will include helping your blood pressure (with extra fluids or strong drugs) and organs (such as a machine for your kidneys, this is called dialysis or filtration).

Helping you to breathe. Oxygen may have been given using a tight fitting mask, a high flow device which is inserted into your nostrils, or a hood that looked like a space helmet. If you become very ill, a breathing tube would have been inserted down your throat. If you were to need help with your breathing for some time you will have a tracheostomy. This is where a small hole is made in the front of your neck so that a breathing tube attached to a ventilator (breathing machine) can be put onto it.

Making sure you have enough food and liquid. This will be done by putting a thin tube up your nose and down into your stomach or by putting a tube in your hand or arm called a drip to give fluids and food.

You will have been given painkillers if you needed them and strong drugs to keep you drowsy or asleep, making the treatment far more comfortable for you.

WHAT OTHER HELP MIGHT I HAVE RECEIVED IN CRITICAL CARE?

There will have been a whole team of doctors, nurses, physiotherapists and other medical staff who will have treated you, looked after you and made you as comfortable as possible.

The nurses will have spent the most time with you and they will have done things like:

Checking how you were responding to your treatment through watching blood pressure, oxygen levels etc.

Administering the drugs that you needed.

Washing you and changing your bed sheets.

Turning you frequently so that you didn't develop bedsores and moving your arms and legs so that you do not get too stiff.

Put a catheter in. This tube would be put into your bladder to allow urine to be collected.

If you had a breathing tube or tracheostomy, you will have needed to have the phlegm removed from your lungs as you were not able to cough strongly. This would be done using a suction tube which was put down the breathing tube. It would have made you cough and retch while it was being done.

HOW MIGHT I HAVE FELT IN CRITICAL CARE?

You may have no memory of your time spent in Critical Care, or you may have very confused memories of what happened to you there. The strong drugs and your treatment will haved affected your mind and body.

You may have:

Felt slightly aware but you didn't know where you were or what was happening.

Had nightmares or thought things were happening which were not actually real. These can feel so real that it can be very frightening. You may have not realised you were in hospital and your mind may have tried to make sense of what was happening by making you think things like you have been kidnapped or were being held captive. Experiencing this confusion and hallicinations is called delirium.

Been unable to talk or let people know what you are feeling.

Have found it very difficult to sleep or have had strange dreams when you did sleep.

Not known what time of day it was, or how many days had gone by.

Felt calmer when your friends and family came to see you even if you were not fully awake.

HOW LONG MIGHT I STAY IN CRITICAL CARE AND HOSPITAL?

The length of your hospital stay will depend on how ill you are and how long you take to recover. You will only be able to leave Critical Care when you no longer require the special drugs and machines to support your body and when you are strong enough to cope on a general ward. It can take many weeks of treatment in hospital and once you are home, you will slowly get better but it can take upto 18 months before you feel strong and well again.

MOVING TO A GENERAL WARD & THE OUTREACH TEAM/PATIENT AT RISK TEAM

Sometimes it can feel frightening to leave the Critical Care Unit to go to a general ward, or leave the general ward to go home. These changes are happening because you are getting better, but this can be a difficult time for you and your relatives because there is no longer the one-to-one nursing that you had in Critical Care, but you still feel far from being well.

Many hospitals now have a team of Critical Care doctors and nurses who will visit you on the general ward after leaving Critical Care to make sure that your recovery is continuing. You may well have met them when you were very ill before you were sent to the Critical Care Unit. They are called the Outreach Team or the Patient at Risk Team. They will be able to answer any questions you have about what happened to you in Critical Care, your treatment or any other worries you may have. If there isn't an Outreach Team at your hospital, speak to the ward nurses about any concerns you have.

AFTER SEPSIS

REHABILITATION

Rehabilitation means things to help you get better after having sepsis. The rehabilitation process will begin when you are in hospital by beginning to slowly move around and look after yourself again. For example you would begin washing yourself, sitting up, standing and then walking, taking yourself to the toilet etc. You will also be working with physiotherapists and they will show you exercises to help you.

WHAT WILL HAPPEN WHEN I GO HOME?

You may be given a rehabilitation plan by your physiotherapist to help you become strong again. 

Generally, when you get home:

You will be very tired and need to rest/sleep alot. Remember you have been seriously ill and your body/mind will need time to get better.

You will be very weak, probably have lost a lot of weight and may find it difficult to walk around. You may well find it tiring talking to people. You should begin by building up your activities slowly and rest when you are tired.

Your skin may be dry, itchy and peel. You will find using moisturiser will help. Your nails may also break easily and your teeth could feel brittle or become damaged.

You may notice some changes to your hair and some may fall out a few weeks after your illness. It is highly unlikely it will all fall out, it usually just gets very thin and will then start to grow again.

It can help with your recovery to have special nutritional drinks like Complan or Build Up, this will help you gain weight again. You can get these on prescription by asking your GP or you can buy them from a chemist or supermarket.

You may well find it difficult to eat again. You should build this up slowly by having small meals and healthy snacks when you feel like it.

Once you are home things can become very frustrating because all the things you could do easily before your illness - walking, eating, even breathing - can suddenly feel very difficult or frightening. What you have to remember is how ill you have been and try and see that you have made some progress even if sometimes it does not feel like it.

HOW WILL I FEEL WHEN I'M HOME

You will probably feel alot of different things after your illness, for example:

Very upset or crying alot

Not caring what you look like

Not wanting to see your friends

Getting cross very easily

Scared at how ill you have been or worried that you may become ill again

Have upsetting memories of your time in Critical care or have flashbacks (sudden powerful memories) of what just happened to you

Having bad dreams or nightmares

Confused about what did happen and what was real and what wasn't

Feeling things will never be ok again

Anxiety - feeling much more worried about things than usual

Depression - feeling miserable, unmotivated or not enjoying the things that you usually do

There can also be other problems after sepsis, such as:

Chest pain

Pain in the shoulders, back, arms and legs

Breathlessness

General weakness

Finding it difficult to move around

Finding it difficult to sleep

Not feeling like eating, or food tasting different to normal

Finding it difficult to concentrate or remember things

Generally all of these problems will get better with time and are a normal response to what you have been through. Some hospitals have Critical Care Follow Up Staff to help patients and families once you leave Critical Care and when you go home. It can really help to talk to someone who knows about the problems you may be having.

 

WHAT MIGHT HELP ME ONCE I'M HOME?

Once you get home, it may feel strange because even simple things can feel difficult (for example climbing the stairs, talking with friends, getting yourself a drink) and you are likely to feel alot more tired than when you were in hospital - this is probably because you are doing more now you are at home and your body is using alot more energy towards getting better.

It may help if you set yourself small, achievable goals each week, like having a bath or shower, dressing yourself, walking up the stairs. It would be a good idea to keep a diary so you can see how you are progressing each week. You will feel better and stronger over time even if sometimes it doesn't feel like it.

It might also help you to:

Talk to family and friends about what you are feeling

Read your patient diary if you have one. Some hospitals help families to keep a diary and you could read this when you feel strong enough

Write down what you remember about your time in Critical Care. You could try and write something for each day and then ask your family to fill in the gaps

Find out about sepsis so that you know what happened to your body and find out what treatment you had. You can ask your GP if you have questions about your treatment

Speak to a Critical Care Follow Up Nurse if there is one at your hospital. Even if there isn't one you may be able to arrange to go back and see the Critical Care Unit, when you feel strong enough to understand what happened and where you were.

You should find it easier to cope with your feelings as time goes by, you begin to get stronger and start getting back to doing your normal everyday activities. If you feel that you are not getting better or are finding it difficult to cope make sure you go and see your GP for help.

 

ARE THERE ANY LONG TERM PROBLEMS I MIGHT HAVE AFTER SEPSIS?

Many people who have had sepsis do go on to make a good recovery and life can return to normal or near normal state of health with twelve to eighteen months of their illness.

However, in the long run sepsis can affect many organs in the body and they do not work properly afterwards. The most common organs which can be affected are:

The kidneys. Some people might always need support via machine. This is called dialysis

The heart. This can cause chest pain, problems with your pulse or difficulty when exercising (you might get out of breath easily). These symptoms can normally be improved with medicines such as tablets or a mouth spray

The brain, if it didn't get enough oxygen. This can make you confused or not think as clearly as you did before and you may find it difficult to concentrate or remember things

The lungs, leading to breathlessness or aching pains in your chest. You may not be able to walk as far as you did before your illness

It is normal to feel upset after being in Critical Care and you may feel anxious or depressed. This should settle down in time but it can help to talk about how you feel and what happened to your friends, relatives, GP or a professional counsellor. Sometimes patients and relatives can have extreme symptoms of stress - this is called Post Traumatic Stress Disorder (PTSD) and this can happen months after your Critical Care stay. If you are stuggling to cope go and see your GP.

RETURNING TO WORK - "Only you will know how much you can cope with"

The thought of going back to work can be a daunting prospect. Most employers are happy to allow you to start back on reduced hours until you feel fit enough to return to your normal working shifts. You may have lost your confidence and feel unprepared for these added stresses. You may still have outpatient appointments for physiotherapy, to see the doctors who looked after you or for dialysis sessions which will dictate how much you can work.

It maybe more realistic to reduce your work hours permanently or even take a sabbatical, you could consider changing your job altogether. Only you will know how much you can cope with.

Finances may be stretched while you are recovering. Many employers will continue paying your salary for several months and then ask for your situation to be reviewed. Others will only pay for a few weeks. Some people will have to rely on Statutory Sick Pay. The government now provides a benefit called Personal Independence Payment (PIP), this has or is replacing Disability Living Allowance (DLA). PIP is designed for people who have experienced a life changing illness or disability. However, you can only make a claim after a three month period from the start of your illness. Your employer and the Department for Work and Pensions Gov.UK (DWP) will be able to advise you. You can find further information at the following: - 

Department for Work and Pensions GOV.UK (DWP) www.gov.uk/pip/overview

GOV.UK (DWP) you need to go Carers and Disability Benefit Section and PIP is there.

 

 

RELATIONSHIPS - "Remember the fact you've survived and you are still together with the rest of your life ahead of you is the important thing."

After such a life changing experience it's not surprising that your relationship with your partner/spouse and close family members may be altered or strained. You will probably feel they are being over protective and generally fussing over you all the time. Do remember they watched you anxiously while you were desperately ill and saw all the machines, drips and tubes needed to treat you and keep you alive. They will want to help you as much as they can now you are getting better. Just explain to them how you feel and you would like to be as independent as possible.

Sometimes there will be a role reversal in your relationship with your partner/spouse especially if you were the one who was working and are very likely to be off work for a while. It could be necessary for them to work extra hours and take on more of the household chores until you are feeling stronger.

Your physical relationship with your partner/spouse may also change after your illness. An injury of major surgery may mean that you look different, sometimes leaving you with scars or a stoma (this is when the bowel is bought out onto the surface of your abdomen). The loss of fingers/toes or limbs can occasionally result from sepsis. You may also lose a great deal of weight or most of your hair temporarily. You may find that you feel extremely tired all of the time and have no interest in the physical side of your relationship. Just holding hands together or having a cuddle and being close is probably a good place to start as you may not feel physically fit enough to take things any further. When you can manage to climb a flight of stairs without stopping or becoming too breathless it's a good indication you are reasonably fit.

The majority of couples do manage to work through these changes. Get to know each other again. Visible scars on your face, neck or legs can often be diguised using make up/concealer or dressing cleverly. You and your partner may grow to embrace these features in time. Remember the fact you've survived and you are still together with the rest of your life ahead of you is the important thing.

WHAT HAPPENS IF YOU DON'T IMPROVE AS EXPECTED?

The majority of patients make a good recovery from sepsis but what happens if you are one of the few that don't seem to improve as expected? What should you and your family look for during your rehabilitation period in hospital?

Signs of Deterioration or Lack of Improvement Physically

Persistent fever - when your temperature remains high longer than expected or after you've finished the antibiotics. You may feel very hot or cold and shiver.

Your pulse is permanently higher than normal (over 90 at rest)

Your blood pressure may be low

You may have trouble passing urine or it causes pain or the amount is very small

You may have a great deal of pain in one area of your body. The area may be red and angry to look at and feel very warm.

You develop a cough and start to cough up phlegm

You may develop diarrhoea and vomit and/or become dehydrated

The doctors and nurses looking after you will be constantly checking for any of the above signs and if they become concerned will take the appropriate action. They could send a specimen of your urine, blood or phlegm to see if there are any signs of infection and if so start you on some antibiotics or give you some extra fluid via a drip. Some patients can develop a small collection of fluid in an area after abdominal surgery or in their chest. The consultant who is looking after you would then decide if it needed draining or not. Usually, these physical problems can be sorted out easily and quickly and only delay your recovery for a short period.

Often ex-patients can suffer from stiff joints, lack of energy and overall weakness for many weeks after recovering from an acute illness. The following are some exercises which should help improve strength and mobility:

Sit comfortably on a chair and look forward. Slowly tilt your head to the right and then to the left. This can be repeated several times. Then slowly bend your head backwards and forwards. This can be repeated several times.

Sitting on a chair, clasp your hands together in front of you and raise your arms upwards and back over your head as far as you can. You can repeat this several times.

Stand up - circle your left arm in a forward movement past your ear several times and then change direction and circle backwards. Repeat exactly the same with the right arm.

Lie down on the floor on your back. Bend both knees up, keeping your legs together and your feet touching the floor. Move your knees slowly from side to side, aiming to touch the floor each side. This can be repeated several times.

Lie on the floor - bend the right knee up to a right angle position and hold for 5 seconds, then lower it to the ground and straighten your leg. Repeat this with the left leg. Do this several times. Do be very careful if you suffer from a bad back.

Sit on a chair and lift one leg a few inches off the ground. Make a circle with your foot by rotating your ankle and then change to the other foot. This can be repeated several times.

Sit on a chair with your back well supported and your knees together. Then straighten your right leg and bend your toes towards you. Repeat this on the left side. Do be careful if you suffer from cramp.