Kasia – Story

Kasia N. will take part in the meeting in September in Dublin in the workshop for Patients Safety

My story

I would like to share my experience of staying in hospital. In September of 2002
I landed in hospital with symptoms of jaundice. Hepatic trials were for 160 times greater than a norm predicts. Doctors suspected injuring the liver and leukaemia. Biopsy of the bone marrow, demonstrated lymphoblastic leukaemia from the group of the average risk. As it turned out my liver was attacked by leukaemia. At that hospital there was earlier only one such a case. I began the chemotherapy after three weeks when my hepatic trials data were a bit lower. I was treated by this time with very high doses of steroids. I carried the first chemicals quite well but unfortunately at second I caught the serious mycosis of the gullet. The leucocytosis fell to 200.

That time I was moved to the second isolation cell, in which was previously a girl infected by pseudomonas aeroginosa. She had necroses on the internal side of the thigh. Such rotations of patients from one room into another have often been. I didn’t match a situation then so that orderlies did disinfections of the bed, the room or toilets before accessing the next patient. I learnt from the infected girl’s mum about how that infection came in, she warned me not to use fresh water directly from taps. Water from taps was poisoned with the bacterium pseudomonas aeroginosa. Sieves in taps which were supposed to serve as water filters were the source of infection. There was no ban on using water by patients. In the previous year there were ca. eight infections of this type, very many children had nutritional infection triggered with this bacterium. Doctors didn’t make, of any preventive action (disinfection or removing sieves from tap waters) didn’t inform also newly arrived patients of the threat. Unfortunately at the first day I washed myself under poisoned water, and when my immunity was weakened the infection set in. At first I had the small bruise on the thigh with the yellow edge and the doctor recognized that it was just haemorrhage. At the same time I had pains near the right collarbone and I was ultrasound scanned that however nothing demonstrated but when a surgeon came to examine the central line it fell out together with dressing and pus. Material sent for tests appeared full of E. Cola.

Early evening the bruise filled with pus, and then the doctor on duty didn’t have doubts that it was pseudomonas aeroginosa. Bacteriological tests confirmed it later. The day after in the morning I went to an operating block where I had the central line put in the groin. That day was also stated the presence of pseudomonas aeroginosa in blood. Chief of the department informed my parents of the possibility of curing with bacteriophages as a new way, but my parents will have to take up with that themselves. To this purpose my Dad went to the different city. There was a great risk that he wouldn’t be in time. Doctor, which had the duty the previous evening, announced my parents without remorse that they should start thinking I would not get through that. There were earlier such cases in the department but all ended in death. So one could think I stood in front of not more than 12 hours of life. However my parents weren’t going to give up, they didn’t accept that it was already end and decided to fight. In the day when my Dad went to Wrocław all my family arrived to say goodbye to me. My grandfather, relatives of my Dad, my sister and my boyfriend, which that day learnt what situation was, arrived. It was a blow to everyone. I didn’t know about the threat, and even if I knew I wouldn’t allow to the thought or fact that I might die. I was surprised that so suddenly my family had arrived and visited me, however on account of the fact it was Saturday I didn’t give some thought to it. I had then horrible pains of the whole body and blandness. Almost still I vomited. I survived till my Dad was back and I took the first portion of bacteriophages. In the evening my condition unfortunately had deteriorated, I was losing consciousness again and again. I was so weak that I could not move at all, parents helped me to turn over to my other side because I could not do that myself. Pains were unbearable. I shouted that I wanted to die. I felt that I would no longer get through. Every six hours I got strong doses of the morphine which did no help for me. Nurses was giving that medicine very quickly what caused I had the feeling I would suffocate myself.

That evening, when a lady doctor came to me and heard how I was screaming in pain, she ordered to get just one more painkiller, tramal, which was supposed to be given by the pump. She forgot to check when recently I had been given morphine. Unfortunately by her lack of attention I was close to collapse. After the pump had been turned on I felt myself strange and had breathing problems. Fortunately the pump was disconnected in time. My calves swelled and I could not move them at all. In order to decrease swellings I was given furosemit in large amounts without any heart protective. Danger decreased after the week of the treatment with bacteriophages. Cultures of blood were negative. Parents were instructed how they were supposed to change me a dressing. Necroses were quite extensive, one on the right thigh, and second on the right collarbone, also on the palate near the left three I had the change with the brown colour, doctor thought that it was mycotic change. Dressings were saturated with the antibiotic. Doctors every day picked tests from abscesses and they were negative. It happened that way because smear tests were picked up in the place which was covered by antibiotic saturated dressing. So it was obvious that the picked up material would give no effects. However negative results of cultures calmed doctors which recognized that there was no need to remove rhytidomes. The surgeon who examined me told my parents that necroses would fall themselves out and not to be scared when there would be much blood. They also claimed that my condition wasn’t good so that it was possible to carry out such a treatment. I was transported to the nonisolated room where me and a short girl stayed together. I had three times a day changed dressings and in case of that I had to undress each time. I wasn’t able to walk on my own, get up to sit, and even with the help of two persons I wasn’t able to reach the bathroom. I used urinal and bed pan without getting up my bed. It felt embarrassed because a Dad of the child which I stayed in the room with was there 24 hours a day. On the department there were most of children’s parents who had foam mattresses or fold-out beds and slept with children. It is easy to imagine that in small rooms (3 x 3 meters) there was hardly enough room for two camp beds. There were also not much bigger three-person rooms which staying in was unbearable. There were also parents which almost generally didn’t wash themselves. Stuffiness reigned in rooms even smell made me sick. Other listened loud to the television or the radio with no care about heavily sick sleeping child.

As only my immunity improved I got the next dose of the chemotherapy. Unfortunately necrotic changes were exacerbated and pus started coming out from the central line wound where earlier E. Cola has been detected. Bacteriological tests demonstrated the pyogenic streptococcus. Unfortunately pseudomonas aeroginosa underwent the mutation and in Wrocław they weren’t already able to make out of appropriate bacteriophages. Only then the surgeon ordered to remove necroses and to put the drain on. That day when I had to go to the block and I was on an empty stomach because I got such an order from nurses, at first p.m. my mum asked the doctor when I would be transported to the block. In the reply she heard that might be next day. My mum was outraged because the surgeon clearly said it was supposed to follow that day. What is more the wound infected with streptococci swelled every hour. Doctor raised his voice and said he took such decisions. In that evening I had very high fever 40 Celsius degrees. The day after in the morning I was transferred to the block at once. Necroses were removed and put on the drain which pus was drained of. I got the new antibiotic. Fortunately that time doctors changed my dressings on their own instead of burdening my parents with it. Every day or two I went to the block where I had changed dressings, given medicines against pain and antibiotics. It lasted for two months and a half. Sticking plasters were used for dressings what caused I had almost scraped skin on the collarbone around wound. Taking such sticking plaster off without the anaesthesia or the premedication verged upon the miraculous. When my condition was already stable and necroses wounds were almost healed I got the referral a surgical department in order to carry out skin grafts. The treatment ended successfully. Later I was under the surgeon care. When everything was already in order I began second block of the chemotherapy that successfully ended on June of 2003.

The change which I had at the palate still stayed, doctors through entire 9 months underestimated the problem and did nothing with that. Only on my own initiative I went to institute of dentistry where they said that was necrosis. Surgery was made and necroses were removed with the piece of the bone. For this purpose I received money from the National Fund of the Health. It was amount of 2500 PLN which I received for the covering the splint and the transplant of the bone. Later they stated that by the upper third tooth has inflammation dental pulp. I was directed to the department where tooth extirpation was supposed to take place. I had doubts about right diagnoses. I went to the another dentist which stated only hypersensitivity. Thanks to that I decided myself to make sure I avoided the unnecessary treatment. However finally they said the transplant wouldn’t be carried out because of still chemotherapy. After the year from finishing the chemotherapy (about three years from removing necroses) the splint which kept teeth broke. I went then again to the institute on Pomorska Street where they stated that everything is in order, it isn’t necessary to do the transplant because the loss will overgrow itself. In the meantime I was at private doctors and everyone claimed that one should do the transplant. Loss is great, deep into about 10mm and it isn’t possible at any time for it to overgrow itself. At present I am looking on my own for the specialist who will carry out the transplant surgery.

Next of my problem is chronic pain in muscles which have last since the time of infection. The most painful are muscles of shoulders and the back. Doctors in the department of oncology weren’t able to give the diagnose whether that pain comes from the chemotherapy or from infection. They did not show any care nor any interest and I was given to understand that was to be like that. I didn’t get a referral to any specialist weather curing pain nor psychologist. On my own initiative I went to the psychotherapist which also worked in the department which I was treated on. At the beginning visits were supposed to be refunded. I had been going for therapy for 3 months and then the psychotherapist broke off a relationship with me. I could not even get in touch by phone nor in any other way contact with her. After 2 months she called me apologizing she could not get in touch with me because she was very seriously ill. Later however I learnt that she had divorced the husband. I decided to come back to therapy. After the month she announced that I would have to pay for therapy. I made up my mind because I felt that therapy helped me. Her hypothesis was that pains in muscles can have psychological basis and therapy will help me. I had been going to therapy for two years and I decided to stop. I felt that was more likely to harm than help. Most of time she told me about things not connected with my problems. She told much about herself and her problems, about the fact she lost the contact with the family, that her husband had deceived her. At some time I felt that she was manipulating me. She could not cancel or postpone meeting and each time I had to pay for it. Even when I was late half an hour because of bus breakdown she took money from me and told me goodbye. I felt intimidated by her. Speaking with persons who were still treated on the department of oncology I learnt that many parents enforce a ban on contacting that psychologist with their children. However despite of that she is still working on that department. I looked farther for help but unfortunately none of doctors from the department of oncology wanted to help me. I didn’t know what specialist to go to. After two years with help of the acquaintance of mine I went to a doctor which was treating with homeopathic medicines. Now I am in the treatment and waiting for effects.

I would also like to mention of effectiveness of orderlies and nurses work in the department of oncology. As I mentioned before together with children there were theirs parents and they were who was burdened with washing floors in rooms. Many parents also was taking out the rubbish or changing of bed linen. None of them was instructed how one should make that. It is obvious that the bedding should be changed in gloves and that the old bedding should be kept separately with new one. However parents didn’t respect these procedures because they had no idea what to do. Each time my mum came to the hospital she disinfected the cabinet, the floor, the toilet. My parents preferred to do that themselves because orderlies did their work casually and inaccurately. When my mum saw, that a woman who washed the floor with the same cloth as the bog and then with that cloth stroke the door handle she decided to do that herself. Spirit for hands disinfecting or cleaning agents were available but when one of orderlies considered that my mum used them too much started ration that out. When one was at the hospital for a long time and parents didn’t washed the floor themselves then orderlies forced them on different ways to do that. Practically the entire child care duties were made by parents. Nurses didn’t regard the education of parents as their duty in the issue of elements and duties they should provide. It happened there that the parent had neglected his child. There was a situation that the mum of one girl through the longer time hadn’t made the toilet of intimate places of her child, what caused the infection. Then the doctor reprimanded her. Nurses weren’t interested in such matters. They weren’t eager in no hurry to nursing of patients out nor helping parents whether they make that well. Gloves usually served to nurses as the protection for themselves rather than for the patient. It happened that they hadn’t worn them by the patient but in the treatment room in the meantime touching the most different subjects upon: door handles, devices to infusions, chairs, a bed. Rules in isolation cells were a paradox. There were two-person isolated rooms. It happened that with the person with the lowered immunity there was a person with bellyache. When the nurse came to the person with the low leucocytosis she put the apron on and when she came to the other she didn’t just do it. Isolated rooms didn’t fulfil their function completely. Persons with the low leucocytosis didn’t have the sufficient care.

In the department of children oncology with a view to the fact that almost twenty-four hours a day parents are together with their children, friendships are developing between them. Parents strive to support each other. Not only in the fight against illness but also the hospital staff. Truly saying there is more possible to learn about incidental effects of treatment from the person which child already passed that than from the doctor. Parents are demonstrating more concern and willingness of help for both theirs and other children than doctors. They exchange the information about all sorts of supporting preparations or alternative therapy as diet. They sometimes make a mistake giving preparation to the child that should not be given but it is only because of the lack of knowledge. Truly saying they don’t have anyone to ask for advice. The role of doctors on the department of oncology is almost restricted to cure cancers with chemotherapy. With incidental effects of treatment each patient must deal himself. There is rarely a commissioned check-up of organs which could be damaged or strained as a result of curing such as liver, heart or kidneys. The same as the test the level of ions of magnesium, calcium or others. I have the chronic magnesium deficiency. The doctor said that the escape of magnesium perhaps was caused by injured kidneys after the chemotherapy.

About ones a year I have examined the level of this element. Thanks to the mother of the little boy ill from the same form leukaemia I learnt that it was worthwhile taking supporting preparations, drink much fresh juice and most of all care about diet. Later I shared my experience with other parents. Among other things thanks to me everyone who was in the department knew that one wasn’t allowed to use the tap water directly. The news about my case spread to the entire hospital. Almost everyone already knew that there was a bacterium pseudomonas aeroginosa in the department of oncology. An epidemiological control which was carried out showed that getting rid of the bacterium meant to change all water and sewage pipes. That meant closing the hospital. Unfortunately totally getting rid of the bacterium was not possible. Doctors started more seriously approaching the problem of infection, as if prevent them the most effectively. The awareness of patients was also greater and thanks to that they were more careful too. Soon there were brought special disinfection products. All washbasins, toilets and outlet pipes were disinfected. Orderlies washed beds before new patient arrived. Parents weren’t allowed to change the sheets. However it is still too little because in spite of the prevention children are still being infected there. Moving the department to the different hospital is one and only effective solution. That is the only department of children oncology in the Łódź province. Every year about 500 persons are treated there. Of course there is a possibility of forming the new department of children oncology where there wasn’t bacterium in the water and patients with no fear could use fresh water. Unfortunately there are no funds to support that program.

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