Marian Petre, 33: “I didn’t know anything about this disease”

I don’t know when I got tuberculosis, when I became ill. And I don’t know when I would have detected it if I hadn’t had some tests done, by chance. My wife went to the family doctor for a check-up and she also asked about my health insurance card. The doctor asked her about me and told her she had my insurance health card and I was supposed to visit the practice and receive it. I went there and she said: „There are some tests that are performed annually, if you want, you can have them done.” Since I was already there, I agreed and I did all the tests but the X-ray wasn’t among them and I said to myself if I did the other tests, I should do that too. The doctor told me it wasn’t included among the state-subsidised tests, I asked how much it was and when she said it was around RON 20, I had a chest X-ray done as well. I had done the other tests and the results had been good, so I thought nothing about it. The doctor performed two X-ray exams, a frontal and a lateral one and she detected TB. She said there was no time to lose and referred me to a pneumologist. This was around the beginning of May.

All the doctors asked me whether I had lost any weight, whether I was sweating and I don’t know what else… Of all these symptoms, I had none. On the contrary, because of the treatment, I feel bad now compared to how I was feeling before. I got weak at the knees, I started shaking, the person who performed the X-ray wouldn’t explain much to me, they only said someone from the internal medicine department would tell me all about it. I went there and the doctor spoke to me but I didn’t hear anything. I was… All I could think about was that I was going to die.

I didn’t know anything about this disease. I had heard about tuberculosis, I knew it was a lung disease and I knew the jokes with „you cough worse than a lunger”, but absolutely nothing about how one gets it or anything, nor about the disease itself or any other disease for that matter. I am 33 years old and I don’t think I had taken more than ten pills over the entire course of my life before this happened. I was even talking to an uncle of mine some time ago and he was saying „I had water in my lungs, I had a broken arm, a broken leg as well…” And I remember I said „I’ve had no health problems until now, but I have a feeling that when I do, it’s not going to be pretty”. Just like I had seen it coming!

This happened on a Friday. First thing on Monday I went to the “Dimitrie Gerota” Hospital, to see a doctor who proved to be a really special person, and she gave me a first line treatment. It was like I wasn’t taking anything. The doctors there were baffled by the absence of symptoms as well. They eventually performed a bronchoscopy to see what was actually going on, because I had no cavities in my lungs or anything of the kind. Two lines, as thick as a pen, were visible. I was hospitalised there for three weeks, they had me on that treatment which I didn’t complete because the antibiogram results came and showed that I had resistance to two drugs. The X-ray results were better after this treatment, compared to the first time, although resistance was present. They let me go home until the antibiogram results came. I resumed my life, but with less work, less effort. Then I got the news, which was like a second blow to me. I had never imagined that I would ever be hospitalised for anything else than an accident. I had never thought that I would become ill like this.

By that time, I was already better informed about tuberculosis, because after the first diagnostic the doctors talked to me and I also read a couple of things on Wikipedia, including about multidrug resistant tuberculosis. I didn’t know at the time that there were three types, all I was interested in was whether it was treatable or not. I found out that MDR, if the treatment was followed strictly, was curable but that one never quite returned to things just like they were before the disease. And I wasn’t affected by the fact that the treatment was lengthy, I mean this thing about the two-year treatment is not what is dampening my spirits, I am a fighter, but the treatment is very hard. Dizziness, sickness… I don’t know, just about until 6.00 in the evening you’re not yourself, you can’t do anything. When I am at home it’s easier, I don’t feel the treatment, but here, in the hospital, when I hear the sound of the drug trolley down the hallway and that smell of rubbing alcohol and… It’s hard. I’ve been in hospital for one month and half and I take 14 pills each day. I am negative, just as I was when I came, I have never been positive, I have never contaminated anybody.

When I told my wife I had tuberculosis, she said not to worry, that it will be fine. And she is supporting me. I’m not scared or anything. She had tests done and everything is fine, including with the little one, because we’re going to have a child.

Now what I have to do is continue my hospitalisation and hope that everything will be fine and I don’t get a third blow. A third blow would be if they detect resistance to other drugs as well. I am still waiting for some test results. And what also makes it hard is that I just sit around doing nothing. I haven’t gotten used, not even now, to just sitting around like this all the time. I am an active person. I fill my time here with long walks. When I get out of here, because we are not allowed too much effort, I will do light work. During the first six months in particular, we are not allowed to perform hard labour, like carrying bags of cement or similar. But carrying some merchandise or something like that from here to there is possible. It’d doesn’t mean that you can’t do anything for two years. This is how I am… I always have to do something; I can’t just sit around. I work as a driver but besides that, life has taught me to do a little of everything. I live in a house with a courtyard and I will be able to take out the garbage, I can help my wife with the chores, I can drive the car…

The group therapy sessions that the psychologist holds here are good, in particular for some of the patients… I encourage them a lot myself and I talk to them and try to make them be stronger because I know what they are going through, which is the same thing I am going through, and we talk from one patient to the other. I have always liked helping others.

I do not think my life will change in any way because of this disease or because of the treatment. I don’t see any change. I don’t even talk about the disease or about the drugs unless someone asks me. It gets worse if you do that. In the morning, you get over taking the pills and then you’re a normal person. If you want to! I believe that if one wants to get over this disease and the hardship one must be positive about it. Just tell oneself “I am going to get over it.” If you do nothing else but think about it all day long… What I was interested in all the time was only if one dies because of it or not, because we have a baby on the way.

As far as work is concerned, I told them about the disease and everybody understood, I have no problems in this regard, they are waiting for me to get back. I also announced my friends and they are very upset about what happened to me but they didn’t shun away from me, they came here and visited me. I didn’t let them inside the ward, I met them in the yard, I don’t want them to come in here and it’s not even indicated.

Of course, I will remember this experience. No doubt about it! And now I know what I have to be careful about in the future. I don’t know who I took the disease from. I only suspect that I took it from one of my colleagues at work who had a persistent cough and to whom I often said: “Get yourself to the doctor’s for a check-up because this does not look good at all!” “I did go, man, but I’m fine”. Then he said he was going somewhere but from what I noticed he didn’t go anywhere but instead took a leave of absence for some treatment… But this is only my suspicion, that he had tuberculosis and said nothing about it and I took it from him. I just as well could have taken it from the tramway or from someone else who coughed in my direction or…

I can’t say I was under stress or that my immune system was weak, I felt fine, I could even say I was the happiest man alive. Perhaps I was tired, I was getting only a few hours of sleep. I don’t sleep too much now either. I spend all night on my tablet, until 5.00 in the morning, then I sleep until 7.00, when the drug trolley comes, then I take the drugs, I fall asleep afterwards and so on. I used to sleep around five or six hours a night. I can’t sleep more than that. I can’t have a normal routine. And I don’t like almost anything here in the hospital, When I was first hospitalised I weighed 55 kilos, and I got to 45 in three weeks. I spent two weeks at home and returned with 53 kilos. Now, I lost weight again, I’m at around 50. Nevertheless, it’s much easier now than during my first hospitalisation. I just stay here to get better, it’s that simple!

I haven’t thought about how my life will be after I complete the two years of treatment. I will resume the normal course of my life. But when I get out of here I will go to the mountains and to the seaside even if it’s winter. I will take my family and we will go somewhere because we didn’t get to go on holiday this year.

To those who are ill with tuberculosis I wish them strength to go through with the treatment, to complete it because it’s the only chance to live, if they want to go on. And then, they don’t get other people sick. Something should be done about the legislation too. And I mean this when I say it. Because what upsets me most is not that I got sick, because I finish the treatment and that’s it. But It does upset me that my body is bombarded with medicines like in the shooting range, I follow this hard treatment for two years and then I go home only to get the bacillus again from who knows what other individual who failed to take, failed to observe their own treatment. It hurts me if the state does nothing about it!

*The patient’s name was changed upon his request

Article by the Romanian Angel Appeal Foundation

Vasile, 45: “I had absolutely no symptoms. No cough, no sweats, no fatigue…”

Vasile C. knew nothing about tuberculosis when he was diagnosed with multidrug resistant TB. He doesn’t know who he got it from but, being from Bucharest, he says he could have gotten it from anyone in the crowded capital city buses, from citizens together with whom he stood in line to pay the bills or just as easily from the street. He can hardly wait to get out of hospital in order to catch a few beautiful days of autumn to go fishing in the Delta. Then, he can return without worries to his office where he works as an interior designer.

“I discovered I had TB at the beginning of the year. I had a coronarography done for a heart problem and then, among other investigations, they also performed a chest X-ray. And they told me that I had certain lesions and that I was a TB suspect. Without having any symptoms whatsoever, at any time, without even coughing… I first went to “Victor Babeș” (e.n. – the “Dr. Victor Babeș” Clinical Hospital for Infectious and Tropical Diseases in Bucharest), the doctor looked at my X-ray and said: “Mr C., it doesn’t appear to be tuberculosis, so don’t worry.” That was immediately after the holidays, in January.

Then, for my own peace of mind, I also went to the Vitan dispensary, where they recommended me to get a tomography exam. Indeed, on the first X-ray, you could not see very well what it was, but the CT showed very clearly that I had TB. Then, I started hospitalisation, first at “Victor Babeș” for three weeks. I got out of the hospital feeling better and I continued the treatment at home for another month, through the dispensary. When the antibiogram result came they found out I had resistance to Sinerdol and Isoniazid and since then, I’ve been here. So, for three months or so.

I knew nothing about tuberculosis. I knew it was a rare disease, and that for the most part it had been eradicated, but I had no idea. I didn’t even know how it manifested, how it is treated, for how long… The only thing I knew was that this disease causes coughing. But I didn’t know one feels tired, drowsy…

I didn’t even know that it was contagious, that you take it from other people. I have no idea from whom I took it. Neither from whom, nor when. I realise now that I could have taken the disease from the public transportation means, from the post office where I would go to pay the bills, from the family doctor’s office too, because it’s crowded… from anywhere. Now I am very well informed about what it means. When I was diagnosed I started asking about tuberculosis, I did some research to see what this disease meant. I had this state of anxiety at first, because I had had absolutely no symptoms. Not a single one! No cough, no fatigue, I didn’t even lose two pounds…

I don’t know whether this happened because I arrived at the doctor’s when the disease was in its early stage, if this is even so, because the X-ray showed a cavernous area – a hole – but probably the body resisted longer. What I was told at the dispensary about the absence of symptoms was that had I waited for a month or two, the symptoms would have certainly started.

My daily treatment consists of 17 anti-TB drugs, plus one injection, for six months. This is in addition to the supplements I take to mitigate the side effects of the anti-TB drugs, which are vitamin B1, two liver supplements, two pills for the stomach… When I found out how many drugs I was going to take… The first time, at “Victor Babeș,” I was shocked. There, I would take 14 pills. When I saw them, they seemed quite many, when I came here, I was given even more! At “Babeș” it wasn’t so hard for me to take them, because I wouldn’t take them all at once. I would take one pill every ten or fifteen minutes and would not feel any side effects. Instead, here I take them all at once… It’s not hard for me to swallow them, but afterwards, when they start working, I feel sort of dizzy, I feel discomfort in my stomach for half an hour or so… In the end, it is a handful of pills… It’s a state of general sickness, but I’ve gotten used to it. As for side effects, I have nothing except the pain in my knees which is caused by the increased uric acid that cannot be eliminated properly. Nevertheless, thank God, I don’t have serious problems!

I have become negative, this is what the first two tests showed, now I’m waiting for the results on the third. It’s a little less than three months since I’ve been here, I could be discharged in a week or so. I also had an X-ray done, and Dr. Popa said it looked pretty good, that the evolution was favourable.

What I do know is that this treatment will not affect my job, because my work does not involve physical effort, staying in the sun and so on. I work mostly at the office. I do field work too, from time to time, but I will not be doing that for a certain period. I am on medical leave but I will work out a schedule for my medication anyway. Now I cannot work, I have the injections too, but afterwards I will go to work. I announced all my colleagues, they had their tests done, everyone is fine.

I didn’t have any problems because of the disease. Neither my bosses, nor my colleagues who are closer to me and with whom I work said anything about it. It’s something that can happen to anyone and it simply happened to me. My colleagues didn’t know anything about tuberculosis either, but I told them. I explained it to them, they also had their X-rays done… My family members also had their tests done and have no problems. I talked to them about tuberculosis, because they didn’t know anything either.

I see this period of my life as a trial. It just happened, it’s nobody’s fault. It is hard, it’s true. One whole summer in the hospital… It will remain a less pleasant memory but I will get over it. I didn’t need private counselling, meaning to talk to the psychologist here, but the group therapy sessions were helpful because I got very good information from Ms Andreea Dumitrescu. She gave us homework, so that we could read a thing or two, she encouraged me… These meetings were very useful. But it’s good that I didn’t lie in bed, that would have made things very hard. Perhaps the first week was the most difficult for me, because I kept thinking that I was going to stay here three months, but then I got used to it. I told myself that was how things were, I was to stay here for three months, get better and be done with it!

When I leave this place, it’s all up to me to take my pills and that’s it. My friends know about my disease, they are by my side, I have no problems from this point of view. Just like my family, they came to see me in the hospital, we talked, they didn’t shrug away from me, I didn’t feel marginalised.

The very first thing that I am going to do when I get out of here, out of “Nasta,” will be to go to the dispensary and work out a treatment schedule. Then, for what is left of the autumn I want to go on a small trip to the Delta. I like fishing. In fact, what I am most sorry for is this, that I couldn’t go fishing. Then, in two years, when I finish the treatment, I hope I will be completely cured.”

* The patient’s name was modified upon his request.
Article by the Romanian Angel Appeal Foundation