Patient stories
Sepsis affects not only patients, but also their relatives. Here, people who have experienced sepsis at close hand share their stories: about the acute phase, recovery and life afterwards. Recognition can help in coming to terms with it. Would you like to share your own story? Email info@sepsisnet.nl.
PATIENT STORIES
Experiences of patients and relatives
Gerrit Zwarts
ICU, sepsis of unknown source
“It is bizarre how you can become so seriously ill from one day to the next. In my case it turned out to be pneumococcus, a lung bacterium. In the first week there was a fight for my life because of multiple organ failure. I made it through, but at the cost of nine fingers and both lower legs.
I spent three and a half weeks in the ICU, where I also went through a delirium, followed by one and a half weeks on the medium care unit. In total I was in hospital for two and a half months. Fortunately I could go straight on to the Hoogstraat rehabilitation centre, where I stayed as an inpatient for three months. There I received two prostheses and was helped to start coming to terms with what had happened. I also gained insight into how to carry on with my changed body. With all kinds of adaptations, after more than a year I am functioning fairly well again. I look back with gratitude on all the loving care from my family, relatives, friends, church and the long line of dedicated care providers.”
Rob Bruntink
ICU, sepsis after flu
“Looking back, I can say that I seriously neglected a flu. I assumed for a little too long that a flu that had come by itself would also go away by itself. I missed all kinds of signals that could have made clear to me that this was no ordinary flu.
When I saw a doctor on the advice of friends, it turned out I had pneumonia. It was so advanced that a course of antibiotics did not help. It set off a domino effect. The pneumonia and the weakness that came with it took me to the Intensive Care Unit, where things got even further out of hand. I developed multi-organ failure and sepsis. In the end I spent about three weeks in the ICU, on a ventilator and largely sedated. I have few memories of that time. What I have certainly learned is to see a doctor in good time when I think I have a bit of flu.”
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Barbara: 47, non-ICU, sepsis after bowel surgery
Two days after surgery for bowel cancer, things went wrong. I woke up feeling unwell. Soon I started seeing things that were not there: quite unreal without any morphine use, but the nursing staff did not find it alarming. Nor was it considered strange that my blood pressure was dropping sharply. I did not have a fever, as my temperature was 38.2 (while on 2000 mg of paracetamol). From then on things deteriorated rapidly, and that same night I underwent emergency surgery.
The sepsis left me with acquired brain injury and PTSD (post-traumatic stress disorder). Finding a good rehabilitation place was quite a challenge, because the bowel cancer also required intensive recovery. But I managed, and I can now say that, apart from the PTSD, I have found my feet again. I will soon get round to the PTSD: the last layer of the bulb that had to be peeled away leaf by leaf. Recovering from sepsis is a tremendous effort, and I am grateful that after three and a half years I can say I am where I am now.
Femke: 47, pregnant in the ICU, sepsis after an ear infection with bacterial meningitis
In January 2016 I was seven months pregnant with our second child when an ear infection led to bacterial meningitis, which ended in septic shock and admission to the ICU. After two days in the ICU I was transferred to the mother and child ward, where I stayed for almost three weeks. In hospital, with the help of a physiotherapist, I learned to walk again and had breathing lessons for the birth. A month after I was discharged, our daughter was born. A great gift that things turned out so well for both of us! My recovery took at least another two years: first physically, then mentally. The lack of energy was enormous, the sensory overload intense. My memory was like a sieve, and that made me insecure. With a lot of patience and acceptance of what had happened to me, I recovered. I never became my old self again, but a new version of myself.
Teenage daughter: non-ICU, toxic shock syndrome from an inflamed toe
In January 2016 I was seven months pregnant with our second child when an ear infection led to bacterial meningitis, which ended in septic shock and admission to the ICU. After two days in the ICU I was transferred to the mother and child ward, where I stayed for almost three weeks. In hospital, with the help of a physiotherapist, I learned to walk again and had breathing lessons for the birth. A month after I was discharged, our daughter was born. A great gift that things turned out so well for both of us! My recovery took at least another two years: first physically, then mentally. The lack of energy was enormous, the sensory overload intense. My memory was like a sieve, and that made me insecure. With a lot of patience and acceptance of what had happened to me, I recovered. I never became my old self again, but a new version of myself.
PEER SUPPORT
Peer support: stronger together
After their hospital stay, many former patients with sepsis and their families want to get in touch with others who have been through the same thing and talk about their experiences. Several hospitals organise an ICU Café for former ICU patients and their families, supported by ICU volunteers. In addition, ‘Sepsis en daarna’ organises an annual peer support day for all former patients with sepsis.
Sepsis Nederland, the Dutch patient organisation for people who have (had) sepsis, their relatives and the bereaved, also offers peer support, information and a listening ear.
CALENDAR
Stay up to date on events
On this page you will find an overview of meetings and events related to sepsis. Whether you are looking for peer support, information meetings or special theme days, this is where you can keep track of everything that is being organised.