I caught ‘flu mid-January. In the grand scheme of things, that in itself isn’t such a big deal. Thousands of people get ‘flu every year. Ordinarily, I get the ‘flu shot, but last year I somehow didn’t get around to it.
I have two sons at university who come home out of term times, and they were with me over Christmas, New Year and until their new term started mid January. On reflection, it was pretty stupid of me to neglect my ‘flu injection as students tend to come into contact with a lot of bugs, of course “Fresher’s ‘Flu” is usually almost a compulsory student experience.
I won’t ever miss my jab again, that’s for sure.
I had a pneumonia shot a couple of years back, which protects me from the most common type of pneumonia – caused by streptococcus pneumoniae – for ten years. Unfortunately, there are several different types of bacterial pneumonia, caused by various organisms.
I am considered as having a susceptibility to pneumonia, partly because I have atopic asthma. This said, once I discovered what causes my asthma flare ups – an allergy to a pet rabbit that put me in hospital a couple of times, some pollens, aerosols, fumes from bleach, amongst other things – it became much less of a problem. It tends to flare up nowadays only when I get a viral infection, such as a cold or ‘flu.
I also have systemic lupus (SLE), which is an autoimmune illness. It means my immune system tends to attack the connective tissue and blood cells in my body. No-one understands yet why SLE starts to inflame and damage healthy cells, tissue and organs. This illness potentially affects the skin, bones, joints, tendons and ligaments, the nervous system, and all of the major organs, such as kidneys, heart, lungs, brain and so on. It often damages blood cells, too. I produce autoantibodies that attack my platelets (thrombocytopenia), which means that sometimes my blood doesn’t clot very well. And there are sometimes other blood cell abnormalities which means my immune system sometimes doesn’t do the job it’s meant to properly – fighting infection.
I had pneumonia for the first time back in 2009. I caught a cold at work, and ended up with a chest infection and severe chest pain on one side when I breathed in. I’d been unwell with a lupus flare back then, too, but I hadn’t had a diagnosis at the time, and so didn’t know what the sudden increase in joint, tendon and nerve pain, violent headaches, cognitive problems, rashes, profound fatigue and general unwellness was.
An x-ray at A&E showed pneumonia in my right lung, in the wall of the lower lobe, and some inflamation of the pleural membrane – that’s why it hurt to breathe in. It was a very small area that was affected (though I felt pretty horrid). I was sent home with two lots of antibiotics, pain relief and a course of steroids. My GP prescribed a third course of antibiotics a week later. I recovered from the worst of the symptoms after a couple of weeks, though I was a little weak for a while afterwards, and was still having night sweats six weeks later. But that may well have been because of the lupus.
From ‘flu to septic shock in four days
When my son started with ‘flu symptoms, I was already rather under the weather. I’d been ill for a little while with an SLE flare and I remember hoping I didn’t come down with it myself, as it would probably wipe the floor with me. It did.
It was very nasty strain of ‘flu – not that any kind of ‘flu is particularly pleasant, of course. My youngest son started with symptoms soon after, and he was very ill, with a high fever, vomiting, diarrhoea and severe joint pain. Both boys had very nasty coughs and very sore throats. I started with symptoms a week later, despite our best efforts to try and avoid that.
I couldn’t eat anything, and only managed to sip water. Anything else made me throw up. My fever soon turned into the teeth chattering, violently juddering kind (called “rigors”), like my younger son’s had when he first became symptomatic. I took Paracetamol to try and get the fever down, and Ibuprofen for the phenomenal joint and muscle pain and very nasty sore throat, but the medication didn’t seem to help. I stayed in bed pretty much most of the time, drifting in and out of sleep. My sons, who by then were over the worst of their symptoms, kept bringing me small amounts of food to try and entice me. I was sick if I ate anything, and couldn’t even keep a cup of tea down. Everything tasted so alien. I managed to sip water, and that’s all.
On the third day, my sons complained that their coughs were still hacking and very dry. I noticed that mine wasn’t. It was a severe cough, but very productive, and I wondered then if I had a chest infection. I was coughing up copious amounts of yucky stuff. By this time I was very weak, disorientated and just wanted to sleep. Looking back, I ought to have realised I was very ill, but ‘flu makes you feel very unwell, and it’s not so easy to recognise any deterioration when you are already so poorly, pretty much bedridden and sleeping most of the time. Both my sons were very lethargic, and still complaining of symptoms, but they were both up and about a bit by the fourth day of their illness.
I slept most of the fourth day, but that evening, I woke with a raging thirst. I went downstairs to get another jug of water to drink. I managed to get to the living room and was shocked at how completely breathless I was, I had to sit down. Even at rest, sitting there, I couldn’t get my breath at all. My son told me I looked terrible and he noticed my lips were blue. I couldn’t speak properly. I just wanted to go to sleep, and my immediate and almost overwhelming urge was to simply crawl back to the comfort and warmth of my bed. It would have been very easy to have put the severe respiratory symptoms down to ‘flu. But I also had a strange and persistent sense of impending doom. Had I gone back to bed to sleep, my pulmonary specialist later told me I probably wouldn’t have woken again.
This is precisely why I felt a need to write about my experience and to hopefully raise awareness about how easily serious and life-threatening conditions like pneumonia and sepsis can arise without you recognising them, especially when you are already ill. I almost rationalised myself back into bed. However, that peculiar and pressing sense of doom didn’t ease off, and it was that which kept me from crawling back upstairs and going to sleep.
My son rang 999 and an ambulance arrived. It’s a good job he did. I can remember thinking, ludicrously, that I really wasn’t well enough to face any paramedics. I just wanted to go to sleep. My mind didn’t feel like my own, my thinking felt oddly flat and somehow muffled and it was a tremendous effort. My new found friend, Mr Gut felt Looming Catastrophe, nagged me, however, quietly setting off a distant panic alarm, informing me that something was very wrong. The word “pneumonia” suddenly crept into my thoughts. I can remember thinking that I definitely wasn’t “alright” – it crossed my mind more than once that I may not actually survive whatever it was that was wrong. They didn’t feel like my own thoughts at all. Yet I was curiously calm and detached through all of this. It was like I was taking time out from myself, and somehow observing from somewhere else, detached.
By the time the ambulance crew arrived, my blood pressure was dropping – 80 over 40 – and I had tachycardia (an abnormally rapid heartbeat) – which is possibly why I had the weird sense of impending doom. My temperature was still over the 39 degrees mark, despite my regular doses of Paracetamol. The paramedic also told me there were no oxygen exchange noises coming from my lower lungs. I was given a thumb prick blood sugar test and that was abnormally high – mine is usually quite low. Plus I hadn’t eaten anything over four days.
I was given a gram of paracetamol, and in the ambulance the paramedic put a cannula in the back of my hand and I was hooked up to IV fluids to manage the low blood pressure/ shock. I was also given an antibiotic and oxygen support, as the oxygen level in my blood was very, very low.
At the hospital, I was seen immediately by the first of several doctors that night. There were crackles and rales heard in both lungs. My blood pressure had dropped to 70/40 despite my being given resuscitative intravenous fluids in the ambulance. I was solemnly shown each test result by each doctor as they were recorded on my file. One doctor remarked it was incredible I’d remained conscious with such low blood pressure. I think my sons being there with me helped keep me in the here and now.
I had a blood test that measured something called C-reactive protein (CRP), which is a substance in the blood that is produced by the liver, and it is used to measure levels of inflammation in the body. It’s used often to test for autoimmune illness flares, too.
A CRP level of more than 10 milligrams per litre (10mg/L) indicates clinically significant inflammation. However, when someone has pneumonia, it is usually very high – often over 50, and sometimes between 100-200. A high CRP is generally linked with infection severity, and a CRP of 200 + is fairly common in sepsis. A CRP above 300 is associated with a poorer prognosis. Mine was 396.
CRP tests are very clever science and extremely useful. It’s not possible to make a diagnosis from the test result alone, but used in conjunction with other tests, CRP results can support a diagnosis. And the CRP level may also be used to judge how effective treatments are. The CRP “resolves” – comes down quite quickly, often before a patient starts to feel better – when their treatment, such as antibiotics, is successful. Two days into the IV antibiotic treatment, my CRP was 193.
I had already seen that it had been written on my notes “sepsis very likely” by the paramedics. The chest x-ray showed a consolidation in the right lung, mid zone, some haze and infiltrate also on the lower left; opacification in both lungs. Consolidation is often seen with acute infectious pneumonia in the middle to late stages. It shows up as white, opaque patches on an x-ray.
I was diagnosed with bilateral “Community Acquired Pneumonia” (CAP). I had many other biochemical tests, such as blood clotting assessments, a white cell count, measurements of serum lactate, procalcitonin and something called alkaline phosphatase, all of which collectively indicated a severe infection and a severe systemic inflammatory response syndrome (SIRS). My potassium and other salts were very low, my blood proteins were abnormal.
My usually low blood sugar was rising, despite my not having eaten for four days. I had to have an arterial blood gas test, which I always dread – I have had those a few times before during severe asthma attacks – but for once it was remarkably painless. Perhaps because I felt so generally awful, maybe experiencing pain is relative. This test measures the acidity and the levels of oxygen and carbon dioxide in the blood from an artery (usually in the wrist just under the thumb). It is used to check how well your lungs are able to move oxygen into your blood and remove carbon dioxide from your blood.
My heart was also monitored with an electrocardiogram machine.
The causative infectious agent was found to be Staphylococcus aureus, but luckily, I tested negative for the methicillin-resistant (MRSA) strain. I had a throat swab that later confirmed I had type A H3N2 influenza, which is known to be a severe strain.
I was admitted to hospital, prescribed IV administered antibiotics – Piperacillin, Tazobactam, Co-amoxiclav, various vasopressors and then slow intravenous infusions of methylene blue because of my dangerously low blood pressure (‘shock’). Vasopressors are used to address septic shock, they contract (tighten) blood vessels and raise blood pressure. They’re used to treat severely low blood pressure (‘shock’) in people who are critically ill. I didn’t respond to standard vasopressors, so a ‘slow infusion’ of methylene blue was administered – it’s considered a ‘drug of last resort.‘
Low blood pressure damages organs, resulting in sequential organ failure, and if left untreated, it causes death. Very luckily I did respond to the methylene blue in the end. By that time, I wasn’t conscious.
When the IV treatment was concluded, I continued to take oral antibiotics for a few weeks, and steroids, which were eventually tapered off.
I saw a rheumatologist while I was in the Acute Medicine department, among several other doctors. I remember she was very blunt and told me I was “seriously ill”. The SLE was considered a “comorbid” condition, which made things more complex because comorbidities can lead to further complications. It was also important to consider differential diagnoses, as lupus can cause lung injury, too. It can lead to pneumonitis and other problems.
The leading cause of premature death in people with SLE is sepsis. It is thought that the substantial immune response dysfunction among patients with SLE increases the risk of sepsis. The standardized mortality rate due to infection was found to be at least five times higher in SLE patients than in the general population, according to research. But doctors and investigators often conflated infection and sepsis. It’s often the case that the cause of death is recorded as the infection itself, rather than the abnormal immune response to it. That means that the mortality rate from sepsis is very likely to be considerably higher than we estimate.
In my case, the recent history of influenza, blood tests and x-rays pointed to infectious pneumonia as the cause of sepsis, but it was thought that the SLE flare was why I had got so ill with the ‘flu and pneumonia in the first place. One of the treatments for my SLE was methotrexate – a chemotherapy which is an immunosuppressant – it lowers people’s immunity – and that, in addition to the illness, has also placed me at increased risk of serious infections an sepsis.
I was put in a room off the ICU on my own – because I had ‘flu – a sensible infection control measure – where I was given around the clock care. The first couple of days in hospital are very hazy, I had a lot more tests to monitor how my body was coping. I slept a lot and I also had hallucinations. I think it may have been because of one of the antibiotic treatments causing side effects, but I was also very ill, so it’s difficult to say for sure. I can remember feeling that everything was somehow very “thin” and fragile – none of my thoughts seem to have any familiarity, reliability, purpose, substance or meaning. I had some very strange and vivid dreams, too. I lost all sense of time and felt like I wasn’t really “there”. I remember trying to hang onto my life – experiences, details and my loved ones. All of those things which make me who I am. But I struggled. I wasn’t myself, that’s for sure.
My oxygen mask slipped off a few times when I slept, and my blood oxygen levels fell as a result – that can cause confusion and changes in mental status, too. I couldn’t use the usual nasal cannula and tube type of oxygen delivery, which is a bit more secure, because my nose was very sore due to blistering, so I had to use a mask. Lupus often causes painful blistering in the nose and mouth, and I had been unwell with lupus for weeks before I got the ‘flu.
I was given continuous oxygen support. Once the IV treatments were completed, I felt a bit better. I even managed a small amount to eat by the fourth day. Everything I tried to eat tasted and smelled of burnt bourbon biscuits, for some inexplicable reason. My sense of taste had definitely taken a turn for the weird. And the IV antibiotics really upset my stomach.
I had to take a liquid potassium medication every day, as my blood tests showed I had very low potassium. It was absolutely foul-tasting stuff, so I tried to take it with food. It wasn’t easy.
I had anticoagulants injected into my stomach every day for a while, as sepsis can cause blood clotting. But I also have an autoimmune bleeding disorder – thrombocytopenia, so that had to be carefully monitored, too.
After five days I was moved to the respiratory ward. The throat swab results had been chased up the day before, and as I had tested positive for type A influenza, I was put in a room that was separate from the main ward again, as an infection control measure. I was also started on a course of Tamiflu, which was rather late in the day for me in terms of managing symptoms and complications, but it was a sensible infection control measure in a hospital, and especially on a respiratory ward.
I’ve made a note for future reference: Tamiflu can be prescribed by your GP if you are considered at risk of pneumonia and you come into contact with someone who has ‘flu.
Once I came home from hospital, I had to be supported by family. I continued to take two lots of antibiotics (Co-amoxiclav and Clarithromycin) and steroids (Prednisolone) for a few of weeks. I finished the course of Tamiflu and my GP was asked to check my ‘flu symptoms had gone. I also have to use my steroid inhaler much more to manage my asthma.
I have had follow up appointments with a pulmonary consultant and my rheumatologist. I had a lung scan last week to see if the opacification on my lungs has cleared. My consultant is concerned that there’s a possibility I may have pulmonary fibrosis – it is sometimes a complication of connective tissue diseases like lupus and it’s also a known side-effect of a treatment I have had – Methotrexate – unfortunately. I’ve had some lung function tests this week, and have some further tests next week. My lung specialist told me that it’s likely to take at least three or four months to physically recover fully from my pneumonia and sepsis.
The standard of medical care and support I have received from the paramedics, A&E staff, Acute Medicine doctors, ward staff, and my consultants has been outstanding. The hospital staff were redirecting some patients to another regional hospital because they were so busy on the night I was admitted, and had said they were only seeing people with very serious medical conditions – such as a stroke or heart attack – and those needing very urgent care. Yet I was seen by a doctor immediately when we arrived at the A&E. Very prompt recognition and treatment of my condition by the paramedics and A&E doctors undoubtedly saved my life.
Sepsis is a life-threatening illness caused by your body’s response to an infection. Your immune system protects you from many illnesses and infections, but it’s also possible for it to overreact, launching a disproportionately aggressive response to an infection and causing inflammation and damage to your body. This can happen to people who are healthy, and who don’t have comorbidities, too.
The first signs and symptoms of sepsis are often subtle and can be mistaken for those of other serious conditions, and the symptoms may also rapidly advance, as they did in my case.
So, my sepsis developed when the chemicals (including ‘cytokines’) that my immune system released into my bloodstream to fight the lung infection cause overwhelming inflammation throughout my entire body instead, which potentially could have led to sequential organ failure.
Sepsis can very quickly lead to septic shock. Septic shock is when blood pressure drops to dangerously low levels, depriving major organs of oxygen, causing injury. If septic shock isn’t managed, people generally die from organ injury.
Survival rates of people who develop septic shock (sometimes called the “cytokine storm” – an overly aggressive immune response to serious infection) are estimated to be between 30-50 percent.
Though my blood pressure had dropped a lot, and the ‘shock’ was refractive, it was eventually stabilised with ‘slow’ infusions of the experimental vasopressor, methylene blue, as none of the others had worked. Methylene blue must be administered intravenously very slowly over a period of several minutes to prevent local high concentration of the compound from causing tissue damage. It can produce methaemoglobinaemia, a rare condition where oxygen cannot bind with red blood cells, leading to hypoxia and death.
I was very, very lucky.
Sepsis (sometimes called septicemia) is always a medical emergency.
Vulnerability to sepsis is becoming more widespread. This is thought to be for a number of reasons:
- More opportunities for infections to become complicated – more people are having invasive procedures and organ transplants, and more of us are taking immunosuppressive drugs and chemotherapies
- Rising antibiotic resistance – microbes are becoming immune to drugs that would otherwise control infections
People more likely to get sepsis include:
- Those with underlying lung disease, such as COPD and asthma
- Those with illnesses that affect their immune response, such as HIV, leukaemia, chronic illness such as diabetes, lupus, some other connective tissue diseases
- Those taking immunosuppressant therapies, such as people who have had organ transplants, those with autoimmune illnesses, those with cancer having chemotherapy, or those on long-term steroid treatment
- Those who have had their spleen removed
Other predictors of higher severe sepsis incidence rates have included socioeconomic status (those in poverty and destitution are at greater risk), and urbanicity.
Any infection can trigger sepsis, but the following types of infections are more likely to cause sepsis:
- Abdominal infection – including gastroenteritis
- Kidney/ urinary tract infection
- Infection of the gallbladder
- Some cases of ‘flu
Symptoms of sepsis include:
- Fever above 101ºF or a temperature below 96.8ºF (above 38.3º Celsius or below 36º C)
- Heart rate higher than 90 beats per minute (tachycardia)
- Fast, shallow breathing – rate higher than 20 breaths per minute (tachypnea)
Other possible symptoms may be:
- Dizziness or feelings of faintness
- Confusion or a drop in alertness, or any other unusual change in mental state, including a feeling of doom or a real fear of death
- Slurred speech
- Diarrhoea, nausea, or vomiting
- Severe muscle pain and extreme general discomfort
- Difficulty breathing – shortness of breath
- Low urine output (not needing to urinate for a whole day, for example)
- Skin that is cold, clammy, and pale, blue, discolored or mottled
- Skin that is cool and pale at the extremities, signaling poor blood supply (poor perfusion)
- Loss of consciousness
It’s very important to seek immediate medical attention if you have more than one or two those symptoms, though loss of consciousness and severe breathing difficulty always need urgent medical attention.
The earlier you seek treatment, the greater your chances of survival.
Sepsis medical criteria
There are two tools or sets of criteria that doctors use to determine the severity of your condition. One is the systemic inflammatory response syndrome (SIRS). SIRS is defined when you meet two or more of the following criteria:
- Fever of more than 38°C (100.4°F) or less than 36°C (96.8°F), often with chills and shivering
- Heart rate of more than 90 beats per minute (tachycardia)
- Respiratory rate of more than 20 breaths per minute or arterial carbon dioxide tension (PaCO 2) of less than 32 mm Hg
- Abnormal white blood cell count
Another tool is the “quick sequential organ failure assessment” (qSOFA). It uses the results of three criteria:
- Low blood pressure
- High respiratory rate (greater than 22 breaths per minute)
- Glasgow coma scale score of less than 15. (This scale is used to determine your level of consciousness.)
A positive qSOFA is determined if two or more of the above measurements are abnormal. Some doctors prefer using qSOFA because unlike the SIRS criteria, qSOFA does not require laboratory tests and so may be used to make a prompt assessment. This means it can also be used by paramedics – as it was in my case. The results of either or both of these assessments will help your doctor determine care promptly.
Tests, diagnosis and treatment of sepsis
The first step that doctors and paramedics take in diagnosing sepsis is to observe the symptoms. Sepsis is a major challenge to diagnose, and in Intensive Care Units it’s one of the leading causes of death. It is also a leading cause of people being readmitted to hospital. Sepsis arises unpredictably and can progress very rapidly.
When doctors observe the typical signs and symptoms of sepsis, they will also consider the patient’s medical history and be alerted to possible sepsis if there has been a recent infection, a surgical or catheter procedure, or if the patient is particularly vulnerable to infection – because of compromised immunity, for example.
Biochemical tests include blood cultures, white blood cell count and C-reactive protein (CRP), procalcitonin and lactase, alkaline phosphatase, platelet count and other blood clotting tests, electrolyte measurement (levels of salts such as potassium and sodium), glucose measurement, protein, creatinine and urea measurements, amongst several others.
The main treatment for sepsis and septic shock is antibiotics, as most cases are caused by a bacterial infection, though viral and fungal agents less commonly may also cause sepsis. If you have severe sepsis and septic shock, antibiotics will be given directly into a vein (intravenously). Ideally, antibiotic treatment should start within an hour of diagnosis to reduce the risk of serious complications or death. Intravenous antibiotics are usually replaced by tablets after two to four days (though sometimes longer). You may have to take them for 7 to 10 days or longer, and often for a while after you leave hospital, depending on the severity of your condition.
Doctors may have to make a quick “best guess” at the type of infection and, therefore, the type of antibiotics needed, because speed in treating the infection is of the greatest importance; waiting for laboratory sample tests would hold up a potentially lifesaving intervention. Treatment may be adjusted once the causative microbe has been identified.
Antibiotics alone may be sufficient at a very early stage of sepsis, but treatment needs to be given very promptly.
For later stages of sepsis and septic shock, emergency hospital treatment will be needed (often in the intensive care unit); additional to the IV antibiotics, it may include:
- Intravenous fluids (especially during the first 24 to 48 hours after admission, if you have severe sepsis or septic shock.
- Vasopressors (to raise blood pressure)
- Central lines
- Anticoagulants (to prevent blood clots)
- Other means of organ support as necessary, such as oxygen therapy, mechanical ventilation or dialysis
Severe sepsis is associated with a drop in blood pressure. Low blood pressure reduces the amount of oxygen and nutrients going to the body’s organs. This drop causes damage to the body’s major organs.
Septic shock advances when adequate blood pressure cannot be restored despite treatment with IV fluids. Septic shock may progress very quickly to multiple organ failure and death.
Symptoms of septic shock include:
- Fever, which may be followed by a drop in body temperature to below normal
- Warm, flushed skin
- Rapid, pounding heartbeat
- Rapid breathing or trouble breathing
- Reduced alertness
- Irregular blood pressure
- Reduced urination
- Rash – some people develop a reddish discolouration or small dark red dots over the body
- Severe bleeding – “disseminated intravascular coagulation”
Complications from septic shock may cause symptoms of:
- Kidney failure
- Lung failure
- Heart failure
- Blood clots
Prompt medical attention, diagnosis and treatment are key to surviving sepsis.
Not everyone experiences problems after being critically ill and the length and severity of the sepsis and the fitness of the individual prior to their illness has a marked impact on how quickly they recover. Post-sepsis syndrome is a condition that affects up to 50% of sepsis survivors.
Some problems that may arise can be physical and/or psychological.
- Lethargy / excessive tiredness
- Poor mobility / muscle weakness
- Breathlessness / chest pains
- Swollen limbs (excessive fluid in the tissues)
- Joint pains
- Insomnia (due to pain / breathlessness)
- Hair loss
- Dry / flaking skin and nails
- Taste changes
- Poor appetite
- Changes in vision
- Changes in sensation in limbs
Repeated infections (a small percentage of sepsis survivors suffer recurring infections during their rehabilitation.)
Psychological and emotional:
- Anxiety / fear of sepsis recurring
- Insomnia (due to stress or anxiety)
- PTSD (Post Traumatic Stress Disorder)
- Poor concentration
- Short term memory loss
And in older people: “…60 percent of hospitalizations for severe sepsis were associated with worsened cognitive and physical function among surviving older adults. The odds of acquiring moderate to severe cognitive impairment were 3.3 times higher following an episode of sepsis than for other hospitalizations.”
Don’t suffer in silence. If you experience any of these problems during your recovery, see your GP and ask for support.
Sepsis and Autoimmune Diseases
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