The story you are about to read is actually about me – the one who is writing it. I am a girl aged 25. My name is Lozinka and I come from the village of Drenovets, region of Montana, Bulgaria. I suffer from mucoviscidosis (Cystic Fibrosis – CF) with which I was diagnosed when I was a baby at the children’s pulmology at the Aleksandrovska Hospital in Sofia – which was the only hospital at the time dealing with CF. Let me tell you in brief about CF.

It is a genetic chronic disease affecting one’s entire organism (except the nervous system). It manifests itself in the formation of tough and dense mucus (this is caused by the absence of salts, which means that the mucus formed cannot be dissolved without the use of special medications like Pulmozyme). The mucus clogs all body organs of canal structures, with the lungs and pancreas being the organs most commonly affected – these are the organs on which the life of a human being is greatly dependent – as they are the ones providing food and oxygen to the organism. As a result of the disease, the organs become a favorable environment for the spread of bacteria, which create infections (pneumonias), which need to be treated immediately upon occurrence with the proper antibiotics and for an appropriate period of time in order to achieve a positive effect. Due to the damage to the pancreas, the organism is unable to absorb the food properly, so the food must always be very nutritious and additional vitamins and minerals must be taken. Therefore, special enzymes (KREON) need to be taken with every meal to make sure that the food is well absorbed, but even so, in some cases growth and development in the suffering individual are slowed down. And, with the organism being exhausted by the disease, the patient’s immunity is heavily damaged, which creates the need of special food additives, immunostimulants, vitamins. Inhalations become a part of patients’ everyday life (Pulmozyme necessary for the dissolution of the mucus), they need to take the necessary enzyme and food additives with each meal, etc. On the whole, life is quite different for a person with CF.

Nowadays, people suffering from CF in Europe, i.e. in the more developed European countries, have come to live up to 45 years on average, while in Bulgaria, the average age is only 15. Well, we obviously seem to be light years away from Europe, while we were among the first to set foot on this continent, weren’t we?

Ever since I was a baby, I have been treated with very expensive antibiotics in very high doses (when they were available), but unfortunately, they are not the only ones needed for me to survive. Until I was 18, I was treated in the Aleksandrovska Hospital, where I received medical assistance when I needed it. Whenever I had a more serious infection, I would always be hospitalized and for 18 years, my physician was Dr. Anni Kufardzhieva, with whom I never had any problems. After each course of intravenous antibiotics treatment I would each time be discharged from the hospital in a much better condition, but... one day I became 18 and from then on I had to go by on my own. There was no hospital to take care of CF patients above 18. There was no clinic in which I could register and could have my disease’s development monitored, there were no experts, no hospital I could turn to if I had a problem, not even a clinical pathway under which I could be hospitalized. All the care ended when I became an adult. At least they didn’t take away my medications and they were the only things I had left (Pulmozyme and Kreon). The clinic which had taken care for me all these years kept providing them to me. A little later on, I had to have them prescribed in a special card for the “prescription and reception of medications according to the Regulation on the payment for the treatment of Bulgarian citizens with diseases outside the scope of the compulsory health insurance, financed by the republican budget”.

Regional hospitals, i.e. those in the province, were incapable of providing a proper treatment – they didn’t have the necessary experts, doctors would get confused when hearing my diagnosis, they wouldn’t know what to do and would often diagnose me with other diseases (tuberculosis, preurisy, etc.) just to avoid my real problem. They would redirect me to specialized hospitals, but there, problems would still arise. At the beginning, the problem was not that big – from 2001 to 2004, I was easily hospitalized, of course, under some other diagnosis like COPD or pneumonia, as there is no clinical pathway for CF. The treatment, though, was hardly sufficient. A CF patient needs at least 14 days of antibiotic treatment of high doses (depending on the gravity of the infection). Well, I never got that, and I always had to complete my treatment using my resources at home (whenever that was possible), usually through muscle therapy, which hardly had any effect... and all of this because the 10 or 7 days given by the National Health Insurance Fund as a clinical pathway were absolutely inadequate.. Did I mention how they treated me with low antibiotic doses in order to save money? How can I get better in such circumstances? So for three years, my infections were only suppressed – they were not treated. I also got my first clinical changes and irreversible processes in my lungs through the serious colonization of the Pseudomonas aeroginoza and Bukhloderia cepacia bacteria. I started having chronic respiratory insufficiency. My life was completely reversed and at one point, two weeks could not pass without me taking some sort of antibiotic (which I usually prescribed to myself – and which was usually the cheapest one and not the one needed to counter the infection). All of this led me to decide to move to Sofia, where all the experts and specialized hospitals were. I thought that whenever I needed help, I could turn to the experts and to a good first aid service, but unfortunately, this was only in theory.

In 2006 I had the experience which changed my life forever and totally broke me down, both physically and mentally. I had yet another pulmonary infection and I desperately needed hospital care. It took me down for just a day – my lungs were weak and the situation was getting worse by the minute. I went to see my general practitioner, I had an X-ray examination and she recommended hospitalization due to a sharp infection with a respiratory insufficiency of 1st degree. I took the first taxi and headed towards the “specialized hospital” hoping they would take me in and start immediate treatment. I went to the pulmology at the St. Sofia hospital. I had stayed there before although the treatment was inadequate. I waited there and when my turn came, I was relieved because I expected that my pain would finally be eased. But unfortunately again, what they told me there was “we have run out of free beds and besides, you don’t have a clinical pathway, so we cannot treat you as necessary”. It was a Thursday morning... I told them: “but I cannot breathe, I can hardly walk, my body temperature is 39, my body is full of mucus, I have a pseudomonas infection, what should I do? I am afraid that I might get even worse.” Their answer was: “Go to a specialized hospital where they will be able to take you in”. I asked again: “Isn’t this hospital supposed to be a specialized one? Won’t some patient be released tomorrow, or the day after? I could wait a day or two, I could buy some antibiotic, just to make it through a couple of days”, but they said “Everything has been planned for weeks again, and we’re sorry, but there’s nothing we can do". They didn’t even give me first aid (which is supposed to be available in every hospital). I asked for methylprednisolon (urbazone – a medication that could ease my breathing), but they refused to give it to me because I was not hospitalized. I was really worried when I left, but I was able to calm down because I thought of another hospital which had a pulmology department. The Military Medical Academy (MMA) – Sofia. I went to the polyclinic and asked for the reception department and headed that way. I sat and waited for my turn. The nurse came and asked: "What about you?" I answered: "I need to be hospitalized, I have the necessary documents". The answer was: "Have you been planned? Who is sending you?" I answered: "My general practitioner is sending me for hospitalization – I have mucoviscidosis and a sharp infection at the moment"; she said: "Wait for a second" and so I sat and waited for this second, which turned to an hour and even more, but I was not worried because I thought I just needed to wait a little and then I would be hospitalized. The nurse came again and asked me in. I felt a big relief upon entering, but then unfortunately, the pulmologist also asked: “Is anyone sending you?” I answered the same thing I had told the nurse. He took my X-ray result, he looked at it and seconds later, I got a clear answer: “We have no free beds, everything has been planned for weeks ahead, but you shouldn’t wait a minute, you should be hospitalized immediately. The situation is very serious, but unfortunately, we cannot take you in”. I remember everything swimming before my eyes, I felt homeless, humiliated, abandoned and helpless. I said to myself: “This is the end”. I gathered myself and asked: “Please recommend a hospital where I can go, I cannot go home, I have no strength left, I cannot breathe, I will die if I don’t go to a hospital”. I couldn’t help myself and I started crying. The doctor answered: “Go to St.Sofia, they have a pulmology, it is exactly what you need and it is quite close”; I said: “But I already went there, but they turned me away for the same reason you did – they have no free beds and everything has been planned”. He said: “Well...I’m sorry, but this is all I can do”. Then I got up and left for home, as I had no other choice. The days went on and I decided to purchase a very expensive antibiotic to attenuate everything once again with the hope to make it through a couple of more days and then to go to the hospital again to suggest some sort of planning and to possibly be allowed to be hospitalized the next days. To my regret though, the situation was getting worse each day, the antibiotic had no effect, I was lying in my bed at home suffering on my own. On a Sunday, I was much worse, with no breathing on the one side. My roommate got really scared and decided to call 150 (first aid). They arrived in an hour and the examination began. Svetli (that’s my roommate’s name) was talking instead of me because I couldn’t – he knew about my disease and managed to explain everything. The doctor asked: “Why were you waiting, why didn’t you go to a hospital, when you have been sick for so many days?” He answered: “They sent her back, they had no beds and no clinical pathway to hospitalize her, everything had to be planned... what is this, a trip to the sea-side or an emergency?” I was lucky that this doctor was good and humane – she said: “But she has a cyanosis, she needs to be moved to hospital immediately. Help me take her down to the ambulance”. So they helped me stand and took me to the ambulance. There she gave me an oxygen mask and urbazone, and turned on a watering bank. She decided it would be best if they took me to Pirogov, as it was only there I could receive quality first aid. We arrived and much to my surprise, I was indeed taken in the emergency room, was provided with oxygen, more urbazone and examinations, first X-ray and then everything else. They concluded that I had no breathing on the left side and the treatment started in no less than 30 minutes. They have neither pulmology there nor pulmologists, but only an “internal disease ward” where they treat people with all kinds of illnesses. I don’t want to forget to mention that there were no beds there either, and I was put on a wheeled emergency bed by the door. This was enough to reassure me that they would help me there and would not “kick me out”. On the next day the doctor visited me and asked me how well I knew my disease. I told her I knew everything and I was ready for everything, so if she had anything to tell me, she could tell it without keeping anything away. She really had something to say: “I don’t know how your infection will end, you have no breathing on the left and you are all wheezing. This is a very serious disease and the outcome is often unfavorable”. I told her I knew this and that I was not afraid, but that I still needed them to try their best and to do what is necessary. She answered: “Yes, of course, we won’t leave you, don’t worry. Let’s just wait and see the result of the sputum analysis to see what the real problem is and then we will start a more appropriate treatment”. She smiled at me and went to see her next patient. I really need to mention this doctor’s name because she deserves admiration. Some would say that this is her job, but for me, she was not just a doctor, she was my savior – Dr. Dimitrova. And so, luckily for me and for Dr. Dimitrova, I slowly but steadily started to recover and she was happy about it. On one of her many visitations she told me: “I think we are doing well, but you won’t leave from here before you get fully well”. I will never forget these words. Neiither will I forget the words of the associate professor present at the main visitation, who upon hearing “muciviscidosis” from my medical history and also “6 types of bacteria isolated” said: “But why is she here?” My doctor tried to explain what had brought me there, but he sneered: “Yeah well then try it, but I see no sense in this”. Those were his words of kindness. When another few days had passed and I was feeling much better, he came again and this time, laughing, he told to his colleagues: “You aren’t giving up, are you?” My doctor explained that things had turned in our favor and he answered: “Yes, but for how long and what is the point?” He saw no point in my being alive, but it is not he who decides, it is only God who can do this. I told him: “Excuse me Mr. Associate Professor (I didn’t know his name), but I am in such a condition because of colleagues of yours who do not care about how people feel, but only judge them by the disease they have. I wouldn’t be here if I had received adequate and timely medical care. Then I wouldn’t even need an oxygen mask”. He just turned and looked at me with an icy stare as if he was mad at my getting better and didn’t want it to be so. I stayed there for 13 days. I did need a little more time (considering the serious infection), but the worst had passed and I was released with a warning and a prescription to continue the treatment at hope. The warning was about my losing a large part of my lungs, which meant they were too damaged and there was no way back. I was advised to seek medical assistance even if I felt a slight indisposition or started coughing. I said I knew when to seek help, but I am often refused any help and even if I am given some, it is inappropriate – treatment with low medication doses and antibiotics for 10 days at the most, which is totally insufficient. And it does not depend on me.

So my lungs’ condition was gradually deteriorating and this is not because of the disease, but because of poor treatment. After some time had passed I decided to search for a good doctor who would dispensarize and monitor me, and would issue the necessary cards for me when I need help. My general practitioner recommended a doctor, but as there was no way I could be registered with my disease (as if it doesn’t exist), I was registered as a COPD patient. I had the right to a monthly visit and if I wanted more, I had to pay – those were the rules. I wondered how this could happen – if I needed to go there, I would have to go again at least two or three times in the days to follow, in order for everything to be traced in full. So I was registered as a COPD patient. Six months passed and I had my next infection. I didn’t lose much time and went directly to my doctor. He told me to have an X-ray examination. I did it and went back to him. Believe me, he was just staring at the result wondering what kind of antibiotic to prescribe. I said to him: “Excuse me, but could you give me a card for a sputum examination, so that we can see what the bacteria are sensitive to this time?” (so again I had to ask for the examination cards myself and to tell the doctors what to do). He said: “Oh yes, here you go”. I took the card, but I didn’t know where to go for the examination. It was the first time I had to do it on my own (without being hospitalized) and I didn’t know where to go. I thought of the St. Sofia pulmology and went there. Thank God, the microbiologist took my card and did the examination. I waited 4 days for the result and had to take an antibiotic, but still I got worse. The antibiotic was not working and I hardly made it through the days waiting for the result to come out. To my regret, the bacteria were again of several types. I took the result to my doctor. I felt that I would have to get hospitalized this time again, as my condition was getting worse. My “dear” doctor concluded that I needed no hospitalization and prescribed me Pancef. This was equal to nothing. I told him I could hardly breathe and that I won’t get better this way, but he snapped: “I am the doctor and this is my advice. Call me in a couple of days to tell me how it is going”. I decided not to listen to him. I didn’t want to die and I knew what would happen in front of the reception office – they would still have no beds, no clinical pathway, etc. The usual excuses. Still I went to my general practitioner to ask her to give me a redirection for hospitalization, as I had no other choice. I wished myself good luck. Of course, she gave me the redirection I needed (she never said “no” to me unlike all the rest. She was no expert, but she understood my problem). She understood everything only by looking at me, but – again – unfortunately, the ward was full again, even in the summer. I didn’t argue because I wanted to spare myself the stress and so I left. Then I remembered that my landlord was a doctor in the first aid of the Military Medical Academy. She knew about my disease and so I called her and she said: “OK, no problem, but I am not working today and tomorrow, so come on Wednesday morning and we’ll see what we can do”. I agreed and waited until Wednesday. We spoke on the phone on Tuesday evening and arranged for me to go there at 8:30 in the morning. I went there feeling quite bad, weighing 6kg less. I was losing weight very quickly. A doctor from the MMA pulmology came for a consultation at the first aid. They took me in immediately. His name was Dimitrov. I will never forget his name. He asked why I had waited for so long and I told him the truth, I told him I hadn’t waited at all, I told him everything. He just shook his head and told me not to worry because they would take care of me. I was already at the ward and they were asking me about the duration of my disease, about the duration of the symptoms, etc. My future doctor also came to examine me. He said: “you are not well at all, but you will be fine, I promise you” and smiled. I was indeed quite bad and started to recover only on the 8th day. I felt he was getting desperate thinking I would not get better. He had stopped smiling and was getting more and more serious. Unfortunately, my lungs’ capacity was low and it was difficult to fight the infection. This time I was also desperate. I lost another 4 kg at the hospital – a total of 10kg in two weeks. My weight was some 44 kg. It just wouldn’t pass, but my doctor would not give up – he changed the antibiotics and increased the dosage. Yes, I will call him my second savior – dr. Yanev, I doubt any other doctor would fight like this. Many bacteria were isolated, including Pseudomonas aeruginoza – the killer number 1 of CF patients. A few more days passed and my fever had gone, but I still needed the oxygen mask. My breathing was not good, but my appetite returned and after a couple of more days I was released. I am really happy I met this doctor. He fought for me and for my recovery and kept his promise. Even though I knew my disease and knew how cruel it was, I believed he would keep his promise. I registered with him. He had his office outside the hospital and he would always help me if I needed anything. Then 9 months later I had another infection and needed to be hospitalized again. I went to see him in his office and he said: “We won’t let you get worse again. Do you agree to be hospitalized at the ward tomorrow?” Of course I agreed and this time things were tolerable. We caught the infection at the start and dealt with it without any complications. However, my lungs were exhausted by previous infections. I had a permanent respiratory insufficiency and needed to start permanent oxygen treatment at home. Good people helped me find the proper apparatus so my hell disappeared or at least became smaller. I had my oxygen at home and whenever I had a problem, I could use it. 6 months later and I had a new infection, which was a little sharper and was developing faster. I was feeling pretty bad in just one day so I called my doctor and I was hospitalized effortlessly. The treatment was good – the classical treatment for CF.... but my doctor had to go on a business trip and had to leave me to his colleagues. For three days I only had one visitation – the main visitation, at which they concluded that my “pathway” is running out and that I should be released because I had no fever. My antibiotic treatment was stopped on the 7th day. I remained at the hospital for 2 more days with absolutely no medications because my pathway was 10 days and I couldn’t be released before they had passed. I couldn’t understand what was going on. I went to one doctor to ask for an explanation of why they were putting an end to my treatment and here is what he explained: “we stopped it because you will get fungi and they are quite difficult to cure, but we will give you Pancef – to take for some 5-6 days more”. I can’t help but be cynical about this: “what the hell is this for an answer?” I was totally astonished. I was released and I immediately started treatment with TOBI 300 (torbamycin) – an inhalatory antibiotic created especially for the killer bacteria of CF patients and zymax (orally). I was sent to me by other good people, to whom I owe the fact that I am alive and still breathing, even though through an oxygen mask. Just 4 days later I had run a fever again – reinfection. It was even more terrible and so soon. It could not be good, I was so terrified. I went to my doctors’ office and told him about my release. I told him about everything that had happened.  He was amazed himself. He wanted me to go through a scanner analysis as well as a new sputum examination to see what was wrong again and what was making my condition worse. The results were not too good. The scanner result was more or less OK, but the sputum analysis results were poor and the functional breathing examination was even worse. It was the killer bacteria again, but this time my greatest fear had become reality. The bacteria were sensitive only to two antibiotics, which meant they had developed a sort of resistance, which is the worst that could happen to a CF patient, as it limited treatment options. Both antibiotics which could treat it were intravenous, which meant I had to be hospitalized again but.... this time there were administrative barriers. I could not be hospitalized because less than 30 days had passed since my release and there was no way. So this time, even if there was a good will, it was the system that rejected me. I was getting worse by the day and I didn’t know what to do. The Mucoviscidosis Association undertook to search of the expensive antibiotic or to collect money for it. Meanwhile, friends of mine were sending me money or were buying the antibiotic to send it to me. Everyone helped as much as they could. That was really great. The Association found the antibiotic and I had to go take it. I did and I started the treatment on my own at home. I had to perform all the procedures by myself and the treatment began through an abbocat. That was a relief for me, but not for long. Despite the antibiotic treatment, I got worse. I don’t know if it was the fault of inaccurate doses (I didn’t have whom to consult as there are no CF experts in Bulgaria), or was it the bacteria who had become resistant, I never knew. A few more days passed and I was again running a high temperature. I had a serious breathing problem which was growing by the minute. It all happened suddenly, about 10p.m. I decided to seek medical help because nothing I tried was working. I tried using my usual breathing pills and my inhalator, but the pills need at least 30 minutes to take effect. I didn’t have 30 minutes. I couldn’t take a breath to breathe in the ventoline and atrovent. The only solution would be an intravenous treatment. I called first aid, but they refused to help me saying “you have this disease, that is what usually happens when you do and there is nothing we can do to help you. No doctor would want to come to you for such a thing”. I decided to go to the closest polyclinic, which was about a kilometer away from my home. I took a taxi to there, but the doctor there explained that this was only a polyclinic and he couldn’t help me in any way (he was right). He gave a redirection after examining me and told me: “You need to go straight to a hospital. You are not well and you shouldn’t wait. Where are you usually treated?” I told him about the MMA and my doctor, but I couldn’t call him as there was nothing he could do at 2:30 a.m. (many hours had passed). The doctor told me to go to the MMA emergency and to explain them everything. Hoping that they would help me I took a taxi and went straight there. I sat and waited for a doctor to come to see me, but I was again refused any help in almost the same way: “Why do you come here when you know what your problem is and you have registered with a doctor?” My reply was: “Yes, I do have a doctor and he knows I am not well now and I am under intravenous antibiotic treatment, but for the last few hours I have been struggling to breathe and that is why I have turned to you and have come here”.  What I heard in response was: “Now what do you expect, me to hospitalize you?” “But I cannot breathe, you can see for yourself”, I told him. He did examine me in the end and said: “I can’t help you. Call your doctor tomorrow and talk to him” “But I will call him tomorrow anyway, but now I need you and I don’t know what to do” His answer to this was: “You can easily make it through a couple of more hours as you did until now” and sent me away saying “I am sorry, but I really cannot help you”. I left not knowing if there would a tomorrow so that I could call my doctor for help. I decided to inject the urbazone by myself and so I searched for an open pharmacy. I managed to inject myself 40ml and thank God, it worked. Thank God, there was a tomorrow, so I called my doctor early in the morning and he told me: “OK, Lozinka, I will have you hospitalized, but that will be tomorrow. Now there are no beds free, but some patients will be released, so you could come tomorrow after 8 a.m.” I was afraid to wait, but I had no other choice. But again I started having problems with my breathing, so I went to the MMA. I don’t want to explain the same things all over again because the words and attitude towards me were the same as the night before. I left again without receiving the medical treatment I needed. I will say it again: “Thank God I made it through the following day when I was hospitalized and the necessary treatment was started. Together with the Association we decided to call the media to present everything that happened to me, as people have to know how a sick person is treated, especially a person with my kind of illness. Of course, they all washed their hands with the doctor in question stating that if I really had been in such a poor condition, I wouldn’t have made it through the next day. He said he examined me and didn’t consider it necessary to have me hospitalized or even provide any medical help to me. He said I imagined the breathing problem because I was scared. Yes, I was scared. I was scared I wouldn’t see the next day. Perhaps I should regret that I didn’t die, so that they would see that I really had needed emergency help and so that the doctor would get what he deserved.

So my treatment began and it was good. I have always been happy with my doctor as he did everything he could for me. The clinical pathway under which I was hospitalized was “pneumonia” which covered a 7-day hospitalization with the NHIF paying 500 BGN for it (I’m not sure if this is the precise amount, but it is more or less 500). My treatment cost 200 BGN per day, not including the examinations that needed to be done, and all of this is paid with these 500 BGN. What would this small amount be able to finance – my antibiotics or my examinations? And as there was no other way, I had to leave again after 7 days, not fully recovered. After this reinfection I needed much more days and much higher doses than before in order to recover completely.  The Association decided to call the ward head and to ask him to leave me in the hospital for a couple of more days, but he firmly refused saying: “Lozinka is costing us too much”. We also took other measures – we called the hospital director to ask him to take care of the hospital treatment (and not the NHIF as it should have been) because of my financial difficulties. We received a positive answer. We all were happy and I stayed another 3 days in the hospital – for a total of 13 days. They still weren’t enough, but were still better than the initial 10 days (3 days after the expiry of the clinical pathway of 7 days, which my doctor had given me together with the new 3 days became 13). Still, they were not enough for me at that moment because I continued the treatment for 5 more days at home using the same antibiotic, which cost me about 160 BGN per day, but I didn’t use the full doses because they would cost me 300 BGN per day. How could I afford to pay for all my medications with my pension of 96 BGN and 8 BGN for medications per month?... But, thank God once again, I got a little better after the intravenous treatment and I continued taking an antibiotic orally for 20 more days, in order to have a complete treatment (as good as possible).

Yes, I am fine now, thanks to our Mucoviscidosis Association and to my dear friends who managed to raise the money for my expensive, but life-saving antibiotics and fought together with me for my life.

So to all of you reading this story now, please pray with me and with us that there be no other cases like mine, not only for me but also for my friends who also suffer from CF and for all other people suffering from this disease. There is a cure for us, there is a good treatment available, through which we would not even notice the disease and would live as all normal healthy people, but we have no access to this treatment. I sincerely and firmly hope that our nightmare will end soon, soon enough for everyone to receive an adequate treatment.

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