Heike's Sepsis Story – My Body the Mystery
When I was 16, I was diagnosed with stage IIIa Hodgkin's disease. What followed was surgery, chemotherapy, and radiotherapy. As part of the treatment, my spleen had to be removed as well as many lymph nodes. I knew I didn't have a strong immune system and should take care of myself. It wasn't until many years later that I saw on TV that you should get an asplenia emergency passport if you have a missing spleen, which I did. But paper doesn't blush and the longer I was well, the less I believed that something bad could happen to me ... and I had already cheated death once.
After being on short-time work in 2020 and 2021 due to the coronavirus pandemic, I decided to reorganize my professional life. I quit my job then and got another one on a Swiss mountain pasture for 9 weeks. I planned to do a lateral entry to work in a cheese dairy on a small farm as milking cows and making cheese in the seclusion of the mountains had always been a childhood dream.
The hut is situated at around 1800m with a fantastic panorama. Running water and electricity is for milking and making cheese only. To keep the hut warm you have to chop wood and always keep the heating oven running. For July the weather was too wet and too cold. Milking and cheese-making were shared between me and the alpine farmer.
Given my medical history, I carry all my medical records and important medications with me at all times. It was after 4 weeks on the alpine pasture that I suddenly developed severe swallowing problems on a Thursday morning after milking the cows. I couldn't eat or drink anything at breakfast. Despite the swallowing problems, I did some alpine meadow maintenance during the day and in the evening, back in the barn milking, wrapped up in warm clothes but still freezing. This is when the farmer sent me straight to bed with 2 hot water bottles, throat lozenges, and a scarf ... It felt like I wore my entire wardrobe in bed so I wouldn't freeze.
On Friday, the swallowing was just as bad and I remember being surprised that the pain was just as intense. Then there were the night chills. I spent all of Friday in bed and didn't eat or drink anything. The alpine farmer checked on me from time to time, and we both hoped I'd get better if I just rested enough.
When I wasn't feeling any better on Saturday, we considered driving down to the valley in the afternoon with the nearest hospital being 2 hours away.
At one point, I wanted to get up to fire up the heating oven when I realized that my upper left arm was hurting and I could no longer stand on my left leg. I dragged myself on all fours into the next room to the oven and then dragged myself back to bed, completely exhausted.
I don't know at what time I fell asleep again, and what happened next, I only know from the narrative.
When the farmer and the visitor, who had come to the pasture on Friday, decided to take me to the hospital on Saturday, I was already unconscious with a change of character. That is why they called the Swiss air rescue service Rega in the evening, which flew me by helicopter to the cantonal hospital in Lucerne.
In the shock room, the doctors immediately took care of me, contacted my husband as I was unresponsive, and performed one exclusion procedure after another. The Rega doctor had admitted me to hospital with suspected sepsis, among other things, but as my results were inconclusive, the search had to be continued. I don't know much about the 5 days in intensive care, just scraps of memory. On day 6, I was transferred to the cardiology ward. For a long time, I didn't understand what had happened or what was going on with me. It wasn't because of the doctors, but because my head couldn't take it in.
It turns out I had caught Streptococcus pyrogenes on the mountain pasture. This caused inflammation of the aorta and mitral valve (endocarditis). The embolisms spreading through the body caused several strokes and necroses on the left upper arm, the left hip, the fingers, and both feet. To save the massive necroses on both feet and both lower legs, the feet, and knees were operated on and flushed three times within 1.5 weeks. Many examinations such as MRIs, CTs, and heart echoes were carried out, which I can no longer remember. I was given antibiotics and strong painkillers for 4 weeks and had to lie in bed for 5 weeks.
It was only when the levels of inflammation were back in the normal range, and the doctors were able to justify it, that an ambulance took me back to a clinic in Munich. There I stayed for another 2 weeks for observation and further wound checks, followed by 7.5 weeks of rehab, IRENA program, physiotherapy and psychotherapy, stays in the pain clinic, and constant check-ups with various doctors. I had further operations on both feet in December 2022 and October 2023.
Due to the many necrosis scars and surgeries, as well as being in a cast for so long, I have to relearn everything that has to do with my feet. Everything! Things that everyone else does so naturally are a mental effort for me, nothing happens automatically. With everything I do comes pain, numbness, and tightness in my toes, ankles, and feet. Also, my cardiac output is reduced and I have been put on a cardio training program designed specifically for me.
Every day I am thankful to be able to stand on my feet and walk. I am thankful for my life and the many helping hands that have made it possible.
I never considered sepsis an issue, even though it's on my emergency asplenia pass. It has just not been on my radar. But now I ask myself questions like: How can I protect myself? How can I strengthen my immune system? How can I trust my body again? How can I become mentally stronger?
I don't think I'm the only one who feels this way. Support during the acute phase is important, but support afterward is just as important. Because I got sick in Switzerland and had to terminate a lot of things here in Germany, it wasn't easy to get back into the German system. Even though I'm back in the system now, I often feel like I have to justify myself because my pain, limited mobility, lack of concentration, reduced performance, and anxiety are not visible.
I began to write a book to help me come to terms with what had happened. A book that tells my story, but also includes the views of my family and medical staff. I want to show the different perspectives and how I managed to motivate myself again and again to cope better with sepsis and its consequences.
I hope that my book "Überlebenskampf Sepsis" ("Surviving Sepsis") will reach the general public and that the topic of sepsis will become more visible and come out of its shadowy existence. I want to give courage to the people affected, confidence to their relatives, and share our perspective with the medical staff. We are all fighting the same battle, albeit on different sides, but together we can support each other.
I am very grateful to my husband, who was with me in Switzerland during the acute period, took care of all the bureaucracy, and has always been a great support to me. He also kept my parents and sister up to date at all times. This was a difficult time for all of them.
The article above was written by Heike Spreter-Krick and is shared with her explicit consent. The views in the article do not necessarily represent those of the Global Sepsis Alliance. They are not intended or implied to be a substitute for professional medical advice. The whole team here at the Global Sepsis Alliance and World Sepsis Day wishes to thank Heike for sharing her story and for fighting to raise awareness for sepsis.