A few weeks ago I noticed I needed to use the toilet more frequently in the night. The previous day I had been out in the cold and had experienced a period of extreme shaking due to the cold. The next day my temperature went to 38.6 at which point QE advised to go to A&E. Coventry hospital diagnosed a UTI and I was prescribed antibiotics and returned home.
I began to feel nauseas and very cold so confined myself to bed with a bucket. I slept from around 9 pm and woke around 2.15 am feeling very sick. Not wishing to disturb my husband, I went to the bathroom to try and sort myself out. My husband had heard me and followed luckily as I was a little dazed and struggled to find the toilet to sit down. He realised that I was hotter than before and checked my temperature which was 39.3. He called the ambulance team who, once I had stopped being sick, took me to hospital. On the way my temperature peaked at 39.7.
I was in A&E for sometime while they found a bed for me. I was even more shocked to be told that I had sepsis! 4 days later I was discharged. I did have to educate one doctor on CLL and luckily I had the QE my health app to show her my WBC count. She expected my count to be lower than it was - personally I was pleased with 49k!
With a compromised immune system, please look out for the signs - high temperature, rigours (shaking uncontrollably), nausea / vomiting, a diagnosed infection, quickened breathing, Increased heart rate. NB you will not necessarily have all of these symptoms - typically 2/3 or more are taken as the indicator of sepsis
Written by
KAS8
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Excellent advice KAS8 and I’m glad to see the dangers of sepsis are being discussed on the site at the moment but sorry you had to experience this. I had the same experience and it’s scary and life threatening particularly for us with compromised immune systems. I’m so glad to hear you and your husband had the presence of mind to realise you were in trouble and seek immediate help. Time is of the essence with sepsis.
It will be the long term anniversary of my father in a few days and he died as the result of septic shock even after surviving initial septicaemia (which is in the blood stream but can quickly progress to the organs).
Just to remind us all that a diagnosis of sepsis doesn’t necessarily need an elevated temperature (over 38) though that is the most typical presentation. It’s possible to have a temperature under 36 and possibly more likely to occur in the immune compromised so please don’t wait for temperature spikes if you’re feeling very unwell. It’s also important to mention that sepsis usually involves decreased urine output which could confuse the diagnosis if a UTI is present. On both occasions, my pulse increased massively so familiarise yourself with what’s normal for you because we all have different temperatures and pulse rates which may be higher or lower than normal. It’s important to have a reliable thermometer and preferably a b/p monitor which also measures pulse rate.
Unfortunately an episode of sepsis does make us susceptible to further occurrences and I had sepsis again with pneumonia. Apparently certain people do have an increased propensity towards it because obviously and thankfully, most infections do not lead to sepsis.
Hope you are fully recovered now ready to enjoy Christmas.
Thank you for taking the time to post about your frightening experience with sepsis. I'm so glad your husband was alert to your situation and called the ambulance team. I often wonder how those of us with CLL manage if we are living alone...
Here's our pinned post on sepsis - and there are sadly a growing number of posts on the topic: healthunlocked.com/cllsuppo...
I keep next to my bed and phone, a 24 hour mobile number given by the Haematology department of my hospital with a list of sepsis symptoms. I also invested in an electronic thermometer with infrared, which goes in the ear, it is the same one that paramedics have used on me in the past and is really simple to use. Also, because I am on ibrutinib, I bought a blood pressure reading device. I regularly take my temperature if I feel under the weather. Both devices I find reassuring aids as I both live in a rural location and on my own.
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