The broken spine, the unbreakable soul
Bladder reconstruction in Urology Clinic of the Johannes Gutenberg University of Mainz
Ends on: 07 September 2017
Od zakończenia zbiórki minęły prawie dwa lata. Podczas mojej osobistej wizyty i konsultacji w Moguncji, lekarz zaproponował jeszcze inną, bardzo poważną i ryzykowną operację, podczas której całkowicie usunięto by mi pęcherz.
Po powrocie do Polski, prowadzący mnie od lat urolog zasugerował rozważenie innych możliwych rozwiązań. Z jego pomocą trafiłam na konsultacje do Zurichu, do kliniki urologicznej dla osób po urazie rdzenia kręgowego. Lekarze podjęli się leczenia. Zostałam dokładnie zbadana, pobrano wycinki do badań histopatologicznych i ostrzyknięto pęcherz Botoxem.
Po kilku miesiącach i kolejnych badaniach zabieg powtórzono w Polsce. Niestety efekty nie były zadowalające. W czerwcu po raz kolejny byłam w Szwajcarii. Tym razem na kontroli, badaniach i zastrzykach, tym razem w zwiększonej, niemożliwej do wykonania w Polsce dawce.
Teraz czekają mnie kolejne testy i za około dwa miesiące lekarze zdecydują, czy leczenie przynosi oczekiwane, dobre efekty i powiedzą mi, co dalej.
A wszystko to dzieje się tylko dzięki waszej ofiarności, zaufaniu i pomocy fundacji Siepomaga i Dzieciom Zdążyć z Pomocą.
There is no sorrow or regret in her voice, and yet she could be bitter and sullen. She never mulls over the incident that happened when she was 18. When in one second her whole world collapsed ...
Smashing, smiling and chattering. That is the way she was like in the past and she is still today. If not for the wheelchair, one could say that nothing has changed, although certainly she has never imagined that way of entering adulthood. It was a summer holiday in 1997. Agata was 18 years old, in September she was supposed to begin the last year of her high school education. She jumped into the water. She had been training for a long time, she had known her limitations and never overdone. She could not suppose that at some point she would simply faint and hit the bottom like a stone.
Agata does not like to talk about the accident. She thinks that it does not make sense to scratch the wounds, she quickly changes the subject. It could have happened to anyone and why did it happen to her? But that is the way how it goes sometimes ... Since that accident its consequences have become more important to her. The girl's spine was damaged at the worst possible location, leading to paralysis in all four limbs. On the threshold of adulthood, when a human is so desperate for independence, Agata became dependent on the care of others.
Agata bridles up when someone tells her she has lost everything. She is still alive. Only this life is completely different than it used to be. Before the accident, her whole life was revolving around sport. She was swimming, she was training basketball. At school everyone knew her. The girl with countless interests and hundreds of ideas per minute. The life and soul of the party and a great schoolgirl. A great start in adulthood seemed to have been included in her curriculum vitae.
Although all the plans collapsed in one moment, Agata did not allow her personal drama to overwhelm her. She was always like that. She did not wonder what would happen, she only acted. And then she did not want to stop, though it would have been easier and no one could blame her for that. She graduated from high school and began to study at the university.
She never asked for any relief, and although it was definitely more difficult for her that for others, she managed to graduate with three degrees. Today, although she could give up and never leave home, she works and in spite of her fate she tries to live a normal life. Despite her disability she returned to sport. She had to say goodbye to basketball and swimming, but she has already found a new passion and successfully participates in trail orienteering competitions.
Although she seems to be a true warrior, there are things that Agata is afraid of. She is afraid of what will happen next ... Since the very beginning there has been her mother next to her, who is everything to Agata. The best confidant, friend and carer.
In spite of twenty years of rehabilitation, Agata has still not been able to become
independent. She needs help even with the simplest tasks. Washing, dressing, getting in the wheelchair, preparing meals - Agata is reliant on others’ assistance in all these activities of daily living. Whenever it is possible, Agata uses the help of her friends because it is getting harder and harder for her mother. Someday her mother will be gone. What will be next? Agata prefers not to think about it...
Shortly after the accident it was easier to reconcile with her condition than now. Then she was sure that she was going to manage anyway. Today she more often has more doubts. She is worried about her mother's health and her own health as well because she is getting worse. Twenty years spent in the wheelchair make you aware of yourself. The back and joint pain is her everyday life. Like poor blood circulation and the need for constant skin care to prevent bedsores. But the biggest problem is the bladder. Shrunk, neurogenic, it is the cause of urinary retraction and recurrent serious infections. Doctors have no doubt – a surgery is necessary. Otherwise Agata is going to die.
Agata’s bladder requires reconstruction and production of a special fistula for self-catheterization. In Poland doctors do not want to undertake the procedure because of Agata's present condition. But she cannot wait. Time is not on her side. Another week means a risk of infection which cannot be overcome by antibiotics. The surgery is also risky but necessary. This is the only way out. Doctors from the Urology Clinic of the Johannes Gutenberg University of Mainz are ready to help.
The surgery will not make Agata wonderfully get up. She will still be wheelchair-bound, but an efficient bladder emptying will give her comfort which healthy people do not even remember. Physical and mental comfort, because in the end she will not have to fear for her life every day.
Every day Agata manages somehow, but the costs of the surgery far exceed her financial capacity. Her mom, who resigned from work for her, cannot help her. The only hope for her to go the Clinic to have a surgery is our support. Although fate so severely tried her, Agata loves life. She accepts it as it is and she shares her joy with others. A life that for many of us would be a nightmare she treats as the most precious gift. We must not let her lose it...