Pfister (Betroffene)
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.
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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.
TRANSCRIPT
Related experiences
Novak (Betroffene)
Before the brain haemorrhage, driving was her favourite activity
For a long time, Ms. Novak did not dare to get behind the wheel. She had to regain her confidence after the haemorrhage. At the time of the interview, she was driving again, but she talks about the fears that accompany her when she does so.
Challenges after brain damage
Stupar (Betroffener)
Mr. Stupar's passenger transport licence was withdrawn
Mr. Stupar is allowed to drive again, but his additional licence has not been renewed. This official action shows him how much the disease affects his future.
Challenges after brain damage
Other experiences by Pfister (Betroffene)
Pfister (Betroffene)
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.
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
Brain damage
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
Brain damage
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
Brain damage
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
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
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
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
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
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
Brain damage
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
Brain damage
Pfister (Betroffene)
Between permanent alarms, care and gratitude
Two years after the event, Ms. Pfister is still grateful to the nurse who spent over two hours unknotting her hair and removing wound secretions. When she was back in the normal ward, she only then realised what noise she had been exposed to during her stay in intensive care.
Procedure after brain damage
Brain damage
Pfister (Betroffene)
Ms. Pfister did not feel well in rehab
Due to the Corona pandemic, Ms. Pfister felt very isolated and missed her social environment. When her painkillers were stopped, she could hardly keep up with her therapies.
Procedure after brain damage
Brain damage
Pfister (Betroffene)
She felt like she was in an "isolation cell"
Ms. Pfister was not allowed to have any visitors during the acute phase of her illness. In addition, she was in a single room during the rehab stay due to her immunosuppressants. She compares the time to a prison, where she missed not only her familiar surroundings, but also her cat.
Procedure after brain damage
Brain damage
Pfister (Betroffene)
On the way to the hospital she kept collapsing
Ms. Pfister pushed herself with medication to make it to the doctor. When she showed neurological symptoms, her family doctor referred her to hospital. Her neighbour took her to the emergency ward of the nearest hospital.
Decision-making
Brain damage
Pfister (Betroffene)
Ms. Pfister has already given a lot of thought to her living will
Ms. Pfister has wanted to write a living will for some time because she sees the added value and knows how quickly one can become incapable of making decisions. At the time of the interview, she did not yet have a written living will..
Decision-making
Brain damage
Pfister (Betroffene)
"Like a deleted hard drive"
Ms. Pfister describes how she was unable to think in context during her stay in intensive care unit. Although she heard the words in conversations, she was unable to grasp the meaning. Since she was able to communicate with herself, she appeared to those around her to be able to communicate. Even after her stay in intensive care, she still had difficulty orienting herself.
Decision-making
Brain damage
Pfister (Betroffene)
When you do not feel understood
The desire to return home may also be due to the fact that those affected do not feel that their concerns are taken seriously. Ms. Pfister felt isolated in the rehabilitation clinic and misunderstood by the staff.
Decision-making
Brain damage
Pfister (Betroffene)
Due to the medical terminology, Ms. Pfister did not understand what was wrong with her
Ms. Pfister had a complication in the form of pneumonia and needed inhalation treatment. She did not understand why this was necessary, since she was in hospital because of a brain haemorrhage. It was only weeks later that she realised her lungs had been affected as well. The staff only ever used the Latin medical terms.
Decision-making
Brain damage
Pfister (Betroffene)
"A blessing in disguise"
Ms. Pfister is grateful for how her illness has progressed.
Decision-making
Brain damage
Pfister (Betroffene)
The scar marks the operation on the brain
Ms. Pfister describes the change as "terrible". The statement "but yes, what can you do" indicates her inability to act.
Identity
Brain damage
Pfister (Betroffene)
In the past, Ms. Pfister has done a lot of bad things to herself
Ms. Pfister looks back on her life before the haemorrhage and describes herself as hyperactive, addicted to drugs and choleric. The subarachnoid haemorrhage helped her to reflect on her life, so that she considers her earlier experiences to have been overcome.
Identity
Brain damage
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