Pfister (Betroffene)
Brain damage
Age 44
Ms. Marti and Ms. Pfister are sisters who look back on Ms. Pfister's brain haemorrhage (March 2020) from different perspectives. Ms. Pfister fell at the age of 44 during her trip to India, although the findings from the computer tomography were unremarkable. On the return flight, she experienced numbness and struggled to stay on her feet. She went to see her family doctor, who referred her to the nearest hospital. On the way there, she repeatedly lost consciousness and no longer remembers being referred to the centre hospital. For her sister Ms. Marti, who is two years younger, it was a shock to hear the diagnosis. Due to the Corona pandemic, Ms. Marti was not allowed to visit her sister, so she gathered all the information over the phone. The brain haemorrhage caused Ms. Pfister additional heart and lung problems. She has also suffered from polyarthritis for years, which is treated with immune system suppression. Ms. Pfister describes the time in the intensive care unit and the rehabilitation clinic as very stressful, as she just wanted to go home. She took a lot of drugs in her youth, but managed to build an independent life and works as a mechanic. Due to the brain haemorrhage, she reduced her professional activity during the period of reintegration, but was fully employed again at the time of the interview. Following her recent experiences, Ms. Pfister has reflected on her life and is grateful to have survived. Since then, she has been taking better care of herself, both professionally and privately, spending a lot of time in nature and consciously distancing herself from consumer goods. However, she also realises that she is no longer as resilient as she used to be. She repeatedly finds herself struggling at work and experiencing certain deficits in her mental performance. Ms. Marti has already experienced many ups and downs with her sister. It was difficult for her not to be allowed to visit her sister, who resisted various therapies in the acute phase. She could only understand the extent of it when she saw her sister's scars for the first time. She describes that her sister became a "different person" because of the haemorrhage, although she is unable to describe this phenomenon in more detail. She had already experienced such a change in her mother after she survived a stroke and has since pursued other priorities in life. Ms. Marti confronts challenges and fears with yoga exercises and the associated spiritual thoughts. Due to her sister's haemorrhage and her mother's stroke, Ms. Marti had herself screened for an aneurysm. The examination showed that she herself does not suffer from an aneurysm. Ms. Pfister lives with her cat and is in a committed relationship. Her sister Ms. Marti is married and has a son. Both interviews took place in person: The interview with Ms. Marti was conducted in August 2021 at the Institute for Biomedical Ethics and Medical History (IBME), the interview with Ms. Pfister in January 2022 at her home.
experiences
Pfister (Betroffene)
When blow-drying, it no longer stopped dripping
After removing the surgical clips, Ms. Pfister went to take a shower. When blow-drying, the hair just didn't get dry. It took her a moment to notice that secretion was running from the wound.
Experience of disease
Pfister (Betroffene)
"You have been so lucky"
It was only when Ms. Pfister researched her illness on the internet that she realised her life was in danger.
Experience of disease
Pfister (Betroffene)
She felt like she was in a "silent anaesthetia"
Ms. Pfister fell from a chair while on holiday and hit her head. The tests showed no bleeding. On the flight home she could no longer move her body properly and at home she felt like she was under anaesthesia. Her neighbour quickly realised that she needed support.
Experience of disease
Pfister (Betroffene)
It takes time to rebuild the muscles
Due to the long period of lying in bed, Ms. Pfister first had to build up her muscles again. Furthermore, she still has a weakness in one eye, so she cannot always open it fully.
Challenges after brain damage
Pfister (Betroffene)
The brain haemorrhage is always a good excuse for Ms. Pfister
Ms. Pfister keeps forgetting something or notices herself that she does not finish sentences. In the beginning, she could only focus on something for a maximum of two hours due to fatigue.
Challenges after brain damage
Pfister (Betroffene)
Ms. Pfister is easily moved to tears.
Ms. Pfister reports that she became much more emotional after her brain haemorrhage.
Challenges after brain damage
Pfister (Betroffene)
Ms. Frey never rode a bicycle again
Ms. Frey is quickly overwhelmed in traffic. When different road users come together, all of her senses are activated. When she is overstimulated, her body reacts with dizziness.
Challenges after brain damage
Pfister (Betroffene)
Life is more relaxed without a car
After Ms. Pfister lost her driving licence, she saw what stress factors were eliminated.
Challenges after brain damage
Pfister (Betroffene)
Ms. Pfister is pleased with the small improvements
Ms. Pfister had to learn to stop putting so much pressure on herself and sees that her mind is much better with it.
Lessons and strategies
Pfister (Betroffene)
"I have to go into my cocoon now"
Ms. Pfister consciously distances herself from her consumer behaviour and spends a lot of time in nature. When she is stressed, she tries to distance herself by humming.
Lessons and strategies
Other experiences
Novak (Betroffene)
Ms. Novak had a brain haemorrhage in autumn 2019 at the age of 52. While working, she suddenly heard a popping sound, lost control of her body and the ability to see. As she was surrounded by colleagues at work, the rescue chain worked perfectly. After the diagnosis was made, she was taken to the central hospital where the medical staff were already waiting for her. The operation (coiling) took place the same day. During the two-week stay in the intensive care unit, she had severe headaches and remembers her hallucinations. She can no longer fully reconstruct conversations. In the rehabilitation clinic, she rebuilt her body and mind. The traumatic experience left lasting scars, as Ms. Novak's everyday life was marked by her fear of having to be hospitalised again. While she was in the rehabilitation clinic, she received the news that her mother had been admitted to the same hospital with the same diagnosis. This meant that Ms. Novak was not only affected by a brain haemorrhage herself, but was also a relative. Until that time, they were not aware of the family predisposition. At the time of the interview, Ms. Novak was worried that her daughter might also suffer from an aneurysm. Her daughter had not yet undergone an examination. Ms. Novak had been working in an office for 23 years and lost her job due to her absence from work as a result of her illness after the protection against dismissal expired. She was very lucky to find a new job right away where she is working full time again. She enjoys the fact that no one at her new job knows her medical history, as she does not want to talk about it during the working day. Ms. Novak lives her life independently again, drives a car and enjoys photography. She has lost the desire to read as a result of her diagnosis. At the time of the interview, she was still undergoing psychological treatment because she has trouble controlling her emotions. The interview took place in July 2021 at the her home.
Suter (Betroffener)
Mr. Suter had a subarachnoid haemorrhage in January 2020. The symptoms started at the company party when he was in the bathroom. He immediately realised that something was wrong and called his partner. When the ambulance arrived, he was still responsive but suffered from a hearing loss and kept vomiting. Overall, he made a very good recovery, although it was only in retrospect that he realised how bad he was during the acute phase. Mr. Suter was 38 years old at the time of the event and worked as a carpenter. He lived with his partner and his daughter, who was 5 at the time of the incident. A year after the haemorrhage, he was doing so well that he pursued his dream and started his own business as a carpenter. The haemorrhage taught him that life can end at any time. Since then, he has taken everyday problems less seriously. He handles difficult situations with a great deal of humour and by trying not to overthink everything. The interview took place online in May 2021 under a very poor connection, which is why there are repeated interruptions of words and delays.
Soldo (Angehörige, Tochter)
At the age of 53, Ms. Soldo had a subarachnoid haemorrhage. She was living with her son's family and lost consciousness in October 2019 while caring for her grandchildren. Her daughter-in-law immediately called the neighbour for help and made an emergency call. The ambulance arrived very quickly. Since the diagnosis of a brain haemorrhage was also established very quickly, Ms. Soldo was flown to the central hospital within a short time. Although the time between the incident and the first operation was very short, she suffered many complications. After the operation, she continued to bleed and part of the skull bone had to be removed. At the beginning, she was paralysed all over her body. With time, she learned to react to stimuli again, pulled her arms back and was able to move her fingers when asked. After the reinsertion (reimplantation) of the skull bone, blood accumulated in her head and she had to undergo another operation. Since this operation, she had been completely paralysed. At the time of the interview with her daughter, Ms. Soldo had been living in a nursing home for over a year. She was in need of constant care and was mobilised into a wheelchair once a week by the nursing service. As we learned from contact with the daughter, Ms. Soldo died two months after the interview. Ms. Soldo was divorced, had two adult children and worked in the catering industry. Her mother tongue was Bosnian. In her free time, she cared for her family and looked after her garden. The interview took place with the daughter of the patient. The day before the bleeding incident, the daughter gave birth to her second child. She was overwhelmed by the challenge of caring for two infants and her own mother, who was in a coma in intensive care unit. Even though she knew her mother's will not to want to live in a wheelchair, she advocated for full therapy. In retrospect and under the experience of this very long history of suffering, Ms. Soldo (daughter of the affected person) regrets some medical decisions. Ms. Soldo (daughter of the affected person) is married, has two children and works as a childcare professional in a day-care centre. She became her mother's legal guardian and made every decision in consultation with her brother. The interview took place on two dates as we had technical problems on the first one. The second appointment took place in August 2021 at the daughter's home. As her children had visitors, it is very lively in the background.
Gerber (Angehöriger, Sohn)
Mr. Gerber (son of the person affected) lost his 63-year-old father to a brain haemorrhage in March 2020. His mother found her husband having a seizure in the stable of their farm. When they called the ambulance, Mr. Gerber must have been lying on the ground for some time. Imaging of the head indicated a haemorrhage with severe brain damage - the father showed no reaction during the examinations. The family decided on the fifth day to withdraw life-sustaining treatment. The father died after a short time in the palliative care unit. Mr. Gerber (son of the affected person) was 35 years old at the time of the event. The haemorrhage occurred in the first lockdown of the Corona pandemic. At that time, the healthcare facilities had issued a ban on visitors. Two relatives were allowed to enter the hospital for end-of-life decisions. Mr. Gerber (son) accompanied his mother on hospital visits. He found it a heavy burden to make decisions without the presence of his siblings. Mr. Gerber (son of the person affected) has three farms with a large livestock farming. His father helped him with the daily work. His father's death was a major turning point in his life.
Frey (Betroffene)
In March 2020, Ms. Frey had a brain haemorrhage at the age of 61. As Covid was in all the headlines at the time, she thought she had the virus and went back to bed and slept for several hours despite suffering from severe headache. It was not until a day later that she phoned her family doctor for medical advice. The family doctor advised her to go to the emergency ward, so she went to the hospital on foot. It was only weeks later that she realised how ill she had been. After a few tests, including a computer tomography, she was to be transferred to the central hospital. At that time, she still thought she had COVID-19 because no one had informed her of the actual diagnosis. When she was finally informed about the findings at the central hospital, she did not want to undergo an operation at first because she was afraid of the consequences. It was only after a detailed conversation with the surgeon that she realised that she could die within a very short time if she did not have the operation. Ms. Frey criticised the fact that she was not sufficiently involved in medical decisions during the (much too noisy) stay in the intensive care unit, and she refused the transfer to the rehabilitation clinic. Ms. Frey lives alone and was cared for by her partner in the first weeks after hospitalisation. She then returned to previous job as a self-employed visual designer. She feels fully recovered, but also recognises that she is quickly overwhelmed by stimuli. She says she is easily overwhelmed in traffic. The interview took place at her home in July 2021.
Stupar (Betroffener)
In April 2020, at the age of 38, Mr. Stupar, a father of three, had a brain haemorrhage. He lost consciousness in the bathroom and was resuscitated by his wife, who immediately called the ambulance. When the ambulance arrived, he regained consciousness, believing he had suffered a heart attack. When he was diagnosed with aneurysmal subarachnoid haemorrhage after the CT scan, he was immediately transferred to the centre hospital. The operation (clipping) took place the next morning. Due to complications and secondary diseases, he lost about 17 kg of weight during the acute phase of the disease. The recovery process at the rehabilitation clinic was an intense struggle for him, not only because he had to rebuild his body and mind, but also because he lost his footing in the single room under corona-related visiting restrictions. Mr. Stupar worked as a nursing assistant with people suffering from dementia and also completed training in nursing. He also held a licence to transport people. At the time of the interview, he was not yet fully rehabilitated. He had a job coach from the disability insurance and was in the process of reintegration into work. In addition to concentration problems and headaches, he suffered from regular headaches and sensitivity problems in his legs. His licence to transport passengers was revoked due to the diagnosis. Mr. Stupar is a musician and angler. He describes how he felt death approaching and now spends his time more consciously. Spending time with his family is particularly important to him. The interview took place online in August 2021.
Marti (Angehörige, Schwester)
see profile Ms. Pfister
Ristova (Angehörige, Ehefrau)
In January 2020, Ms. Ristova took her 40-year-old husband to the emergency ward of the nearest hospital with severe headaches.The Macedonian family only speaks broken German and the incident took place on their last day of holiday. The attending doctor sent Mr. Ristova back home as he diagnosed only muscle tension. Mr. Ristova suffered from classic symptoms (severe headaches, nausea, high blood pressure) for a week until he lost consciousness. By that time, the bleeding was already so advanced that his life hung by a thread for several weeks. The ambulance service informed Ms. Ristova that her husband might not survive the flight to the central hospital. Mr. Ristova survived the subarachnoid haemorrhage, and spent several weeks in intensive care unit, where he was ventilated and completely monitored. He needed a tracheotomy until he could breathe independently again. Mr. Ristova learned to move all parts of his body again and has been living with his family since his stay at the rehabilitation clinic. Nevertheless, Mr. Ristova is unable to return to his old life. Due to the brain haemorrhage, he has pronounced neurological deficits that do not allow him to return to his usual working life. He very much wants to work in construction again. However, as he no longer able to carry out actions consistently and is unable to complete simple tasks, he is accompanied daily in a sheltered workshop. He himself does not recognise the deficits and feels unfairly treated, which has an increased potential for conflict. Ms. Ristova is overwhelmed by the situation. Together with her husband, she has two children aged eight and 16 (time of bleeding event). She describes her husband as a third child, who she is also caring for. Her husband used to have two jobs, helped with the housework and helped the children with their homework. At the time of the interview, Ms. Ristova was doing the housework alone, securing the family income and taking care of the children. She described how exhausted she was, how she needed psychological support and how she urgently needed to regain her strength. The interview took place in August 2021 with the wife in their shared flat.
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