Zsuzsanna Bernáth Lukács SZÍVSN’s lecture in Lakitelke demonstrated the importance of daring to ask questions and not accepting to be treated with disrespect through two concrete patient stories. Even one question can save lives. Remorse – for complaining about people we respect and to whom we owe our survival – increases the bad feeling. We expected to be listened to, to be kind, even though we knew there was no time.
Dr. István Kappéter, physiotherapist, neuro-psychotherapist and self-taught futurologist, until his death an external member of the SZÍVSN board, gave a presentation on why it can be life-saving to dare to ask questions and speak up when there is no time. So that we don’t feel remorse for the one who saved our lives but then ignored us. István Kappater lived with a pacemaker until his death in 2021, Ágnes Sípos Ágnes is a pacemaker, now living with a new heart, whose example shows what happens when we are not cared for. When there is no communication. Both have been given a fuller life, but the journey has not been easy, neither before nor after. Let’s learn their story.
“I was sent to the inpatient department by my GP because of a high blood pressure drop due to a bug. They called in the nurse on duty at home, who operated. Afterwards, he was too busy to talk to me or my wife. After the implantation of a permanent pacemaker, I wanted to ask her on the ward what to expect and what to do, but the colleague who had operated all night before would not talk to me. I almost died because I didn’t know that modern pacemakers can cause a dangerous drop in blood pressure if overdosed. I couldn’t find it in the medication leaflets. My first wife’s tachycardia attacks, which had been increasing in frequency for years, could not be corrected by a respected colleague in 2001. My wife’s doctor demanded more thorough care. Nor was I pushy enough to go to others. His first heart attack came at the end of such a tachycardia attack, which then caused his death. I can’t resist expressing my hurt at the way I was treated by my life savers. It doesn’t change the fact that I understand them. That is why my rescuers and my wife do not like me”.
The experience of Ágnes Sipos, who underwent chemotherapy treatment as a child, is now living with a new heart.
“When I was feeling weak in sports, gaining weight, I realised that my heart was damaged by chemotherapy, my heart was beating faster. After that, I was slow to get a more thorough check-up because others were classified as more urgent. I didn’t realise I was getting wet, I thought I was gaining weight. The doctor who gave me the injection didn’t look at my records, so he gave me something. First he shouted at me “Don’t be hysterical”, then my heart stopped. I often feel that they don’t take the dangers of drug side effects seriously. More often I feel they don’t believe me. It is rare that they give me the information I ask for. I want to do everything I can to raise my little boy! But how do I know if I am giving enough? Maybe others can give more! Will I “deserve” that heart or will there not be a suitable donor for me? He has a lot of respect for those he would like to ask many times to consider him as a person to talk to about what he has to do, why he has to do it. I often feel that they don’t take the dangers of drug side effects seriously. More often I feel that they don’t believe me. It is rare that they give me the information I ask for. It was a relief to be able to talk about her problems and ask questions through the SZIVSN” – these were Agnes’ thoughts, who has since then been living with a new heart and speaking about her experiences at national and international conferences.
“I presented the examples of two self-aware, determined patients who were very successful in their work. But even for them, it was difficult to get answers, a mental dilemma to question the caregivers who saved their lives. Both examples show that the patient respects his doctor but feels that there is no time, that even if he dares to ask questions, he waits in vain for answers and that this may well cost him his life. This is why it is important for everyone to know that we have the right to ask and to know that we have the right to answers”, said Zsuzsanna Bernáth Lukács in her presentation.
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