How Peter overcame the challenges of the healthcare system in Poland. Episode 1

Monika Rachtan
Good morning, I welcome you very warmly to the first episode of the podcast. First of all, a patient. My name is Monika and I will have the pleasure of meeting you every Wednesday on my original programme, in which we will talk about patients' problems, and I will invite prominent Polish experts from various fields of medicine to join the conversation, who will answer my questions, but also your questions. Therefore, I already encourage you to ask questions in the comments. I will also try to keep you up to date with the profiles of the experts who will be guests on my programme. Ladies and gentlemen, a little bit of stage fright as this is the first episode, but today in pleasant circumstances with Mr Piotr Warszawski. Good morning, Mr Prime Minister, and in fact it's Peter, because we've just gone through the first episode on this one, and not a medical expert, but who? The patient?

Peter
Definitely not an expert, but let's say passionate, passionate.

Monika Rachtan
A passionate patient, but above all a patient. A young man, in his thirties, a peer of my own age, who is already moving efficiently in the healthcare system, and is moving efficiently because he has already been in the system for a few years and has to cope somehow, right?

Peter
Yes, that's right. I'm in the system because it's a bit of a health adventure in my life already, it's already happened. And in fact, being aware and planning a little bit, a little bit for your future and hoping that you will still live there in this world, as it may sound, well, it's good to pay attention to your health. And what it looks like. Anyway, I had alarming, disturbing signals, which somewhere in there and visually, which somewhere in there signalled that something was wrong, and a person living in such a daily work frenzy gets lost in it a little bit and despite everything, sees himself in the mirror every day and doesn't see these changes. And I remember a moment when, as a 22 23 year-old student, I wanted to go to an event called the Polish Academic Championships and I wholeheartedly did.

Monika Rachtan
Championship.

Peter
It was possible to choose from an area in which the student in question felt he or she was at a sensible level. Because it would be a long discussion. But generally, that sensible level is when someone just feels that they would like to prove themselves too. But if someone is good enough and will perform, I guess, well you can accelerate your career a lot by showing up at such events, but.

Monika Rachtan
Well he has just signed up for this championship and.

Peter
That's right, and my instructor, who was running a sports class, said this one sentence to me Peter, but you're obese. And that was such an effect for me. A cracking glass.

Monika Rachtan
Did you think to yourself that I am obese? I'm sick. Now of course it's such a trend that we all say obesity is a disease. Did you think to yourself He is insulting me? Who is he to judge me and say that? Am I skinny or am I fat? Have you thought have I, I'm fat, then I'm inadequate and I can't cope. Or have you perhaps thought yet What's that? If I'm obese, I can't do that.

Peter
It was such a strong statement, which I actually then started to analyse in different ways. In the beginning, all these straps came up somewhere along the way, but now, in retrospect, I saw in that person what it meant. It also takes courage to tell another person such a rather drastic statement. But going to the substance of the fact, I started to analyse. And maybe there is actually a little bit of something. Something has changed in me that I actually have some action despite being active. No, no, I don't sit around all day, not actively, I just spend my time quite dynamically as a student. Something in my everyday life is wrong, if my body started to change drastically, because it's in effect over a period of three to four months or maybe six. It's hard to judge, because at the time I wasn't watching myself that hard. I had put on almost 20 kilos, so that should already be a signal. It seems to me for someone.

Monika Rachtan
But I think it was more a question of some kind of abnormality in the body or the fact that even though you lived an active life, that fridge was not a fridge, such a model young person?

Peter
2 times yes. In the sense of these threads twice, because once that she was not the model fridge of a young person, maybe not model, correct about so I would say. And the other thing is my body has already started to say enough. This is the moment. I, like you said, I'm sorry, I'm not an expert, but I observe myself and now I have some observations. And as a result, I know that I have already reached that point where my pancreas, my organs related to metabolism have stopped functioning as they should. And all of a sudden those extra calories, that high glycaemic index started to turn into body fat quite dramatically. I was already at the stage of insulin resistance, where I was starting to become resistant to my own insulin and that insulin, instead of burning those carbohydrates, stopped functioning as it should. So I started to put on weight quite drastically.

Monika Rachtan
Amazing. Your level of knowledge in terms of how it works, what exactly is the mechanism of insulin resistance, because that's something that patients tend not to know and even when they find out from their doctor, they don't necessarily understand that process. But I would like to go back to the beginning, because it's amazing that as a 30-year-old man you are so focused on your health. When I talk to doctors, I often hear that it's the guy's wife who needs to see that doctor, the woman's mum otherwise. Well, because we start to take care of this health of ours. The moment we start trying for a baby. Then there's pregnancy. We get used to seeing this doctor quite often. Then we go to different specialists ourselves with the little one and there's also this light in the back of our minds. Well, I have to take care of myself, or at least I would very much like it to appear. I have to take care of myself so that this child can be brought up as a healthy mum, a healthy child. And with men it's different. They tend to be first studies, entertainment, then work. I have to build a house and before that plant a tree or first plant a tree and then I build a house.

Monika Rachtan
Anyway, there's a lot of life issues like that, and it's health somewhere down the line if you're showing an interest in health. Whereas you're in your 30s and I guess I can say that, I probably make a few visits to specialists every year from what we've talked about or before us in recent times you've been going to these specialists and different medics a little bit.

Peter
As far as all these issues are concerned, it's really a question of ideas, I guess, and what my idea is and who accompanies me in this life. I don't even think it seems to me. We know that a very big part of the credit for that goes to my wife, who supports me to take care of myself, but together we are also trying to have such a healthy future in the near future, but also in the long term. I hope so.

Monika Rachtan
Soon to be living healthily together.

Peter
Yes, yes and I guess it's so philosophical a bit. Well, because it is. It all depends on what a person's needs are. Because if a person's focus doesn't matter if they're a man or a woman has a need and they know that they want to take care of themselves for somebody, that's a big motivator in my opinion. Because like a mother for, for a son, for a daughter, a child or a father then she herself can also be motivated or a partner for a partner. And someone feels motivated to take care of themselves if that motivation is lacking. Whether by the kind of prism I've said or any other, if I don't have the motivation, then this, this, this, no action. And even somewhere in the management sciences it is said about motivation that a person is motivated. It is not possible to motivate him to act again. So if someone allows this motivation to drop to such a low level, they are unlikely to continue their activities. And that's when perhaps the specialists we've been talking about should step in.

Peter
And quantitatively there are actually some of these visits, but I'm now, at the moment focusing mainly on physiotherapy, where also in our conversations apart from the ones recorded there were statements like that, that physiotherapy is quite important and relevant. Well, because the overall day-to-day wellbeing matters a lot. And how did that come about? I just explored, I searched just like you mentioned between the lines, somewhere this engineering education in me, so I just engineer. I approach the subject, I look and I research one, two, three, four and then I find that here someone helps me, here comes someone more empathetic, as we mentioned and a medical doctor person that you just want to come back to and help. So that's another motivator as well. A person doesn't bounce back and look for it, and if they look for it and they have help, they say Aha, well then maybe it's worth continuing, because maybe there will be results of some kind in the future.

Monika Rachtan
OK, you've talked a lot about motivation, and now I'm going to ask about such a dark side of the Polish healthcare system. Well, because we know how. What the queues to see specialists are like. Tell me, do you happen to go to see a doctor under the National Health Fund, or do you rather take the commercial route and not bother with the National Health Fund?

Peter
This is an interesting question and in such everyday life, if the conditions let me categorise are quite basic, it seems to me that there is an opportunity just to contact a primary care doctor. But when, unfortunately, the conditions start to be so, let's say unpopular. Here I'll give my example, because that's probably the easiest way. Let me start. My condition is called corneal cone and up until about 10 11 years ago, as it somehow started plus or minus maybe 12. Little did it and little did any doctor know. She knew what the condition was. Ophthalmologists were not familiar. In fact, there was one specialist in Wrocław that I could go to on Stawowa Street. My warmest regards to Dr. Brzoza, who adjusted my first correction, but really was at all aware in the area of what the condition was and I was referred to her. And thank you very much too. It's a metric that I had contact with for the first time, who told me honestly I can't, I can't adjust your glasses, despite my experience, despite my education, despite the fact that I sign my name as a tourist on the sign, it's also a little bit about me that someone has some responsibility and you also have to have the courage to say I don't know, I can't, I won't do something for you on 800 quotes, just that, just help and say I can't do it.

Peter
Seek help from a specialist in ophthalmology. What the content of ophthalmologists is once, that it is necessary to distinguish at all, because this person who knows the technique of glasses and so on the physics of it all. It would be a long story, but a doctor, a doctor, a doctor is a person who, however, will examine this bottom of the eye, will get acquainted with this condition and my contact, the first one was private.

Monika Rachtan
What you said All the time I am in great shock. What a conscious patient you are, what a conscious, sick and aware person you are. You're also a consumer, because as if you're not. Going, buying glasses, because we buy them, you're a bit of a patient at that point, but you're also a bit of a consumer, because you're making a purchase. And now I would like to sensitise our listeners to the fact that it is very important to distinguish between certain specialisations and what someone does. Because it is not the case, for example, that when you go to your primary care doctor and he says, 'Peter, I cannot prescribe this medicine for you, because I am not a specialist. You have to go to a diabetologist, he will examine you, because he has in his basket of services, let us say in his briefcase, in which he can write such an examination, such a test, such an examination, an appropriate test, which will allow something to be examined and which will allow it to be determined whether this medicine is for you. I don't have that capacity. As you said, this person has the courage to tell us that he is not qualified for something or does not have the knowledge.

Monika Rachtan
And such a statement is really very much worth respecting. You cannot say about such a doctor that he is ill-informed, that he has bad will. He is simply doing his job, he has certain knowledge, he has certain competences, but in addition he is also limited by certain rights and duties, he has certain responsibilities. The National Health Fund also imposes on him a certain framework within which he has to move. He can't do everything the way he wanted, the patient just asked, So I think it's worth paying attention to that. And thank you for your words just related to the ophthalmologist and the tyre, Because I think people don't differentiate at all. Yes, but I would also like to draw your attention to the fact that just when we are going to make such an important purchase, like buying glasses, that is the thing. I get up at seven o'clock in the morning, I put them on and I take them off at twenty-three, that it is an important thing, it is more important, I would even say than the telephone, which we use every day. And it is worth considering whether we want that quality, because that quality can allow.

Monika Rachtan
But maybe it is better, when choosing between a mobile phone and glasses, to leave it. So I think that is very important. The third thing I would like to point out is that it is worth choosing those Optima ones though. Yes? So when we go to buy glasses, let's think about whether it's a person who can fit us with these glasses and whether they've been educated in this direction or whether they just work in a certain place and they're not exactly a tourist, because these situations happen, right?

Peter
This is where I'm a bit lacking in knowledge, it's certainly possible to be an entrepreneur and run an optician's shop. It's the same as you can run a clinic it seems to me without being a doctor, without being a doctor, but well once that I think it's such a social responsibility, empathy and professionalism and just being human to back up your decisions and recommendations to someone on some knowledge, experience and education. Hence the difficult, Difficult question it seems to me. Well, but one has to live in the hope that it actually probably is. Me thinks.

Monika Rachtan
That it is worth simply checking and asking. And while we are these patients, but also consumers, we need to know our rights and our responsibilities. Amongst other things, it is our right to check who is giving us the advice in question. I think this applies to many specialities, for example to dieticians. Physiotherapy Yes, these are the kind of areas where it is really worth asking about that experience, asking whether, in fact, if it is a dietician I have finished my studies, whether it is a clinical dietician, whether, unfortunately, as it happens in our country, a dietician who has finished a two-week online course and obtained the title of dietician, because that is also possible, for example... Yes, there are such courses. I don't know if it exactly lasts two weeks, but certainly without graduating from university you can title yourself a dietician and often on the Internet there are such traps, so I also warn. Peter, at the beginning you mentioned your condition of visual impairment. I know that because of this condition you, as a twenty-something, have already obtained a disability certificate. And tell me, because I see before me a man who is generally independent on his own.

Monika Rachtan
You came on your own, you say you don't need the assistance of another person. However, that disability is there and I think it's also worth talking about, that you can look quite normal, however, and have some serious health problems that prompted the medical examiner to write on the certificate that you have a severe disability, right?

Peter
Yes, this is true. But it's worth pointing out that it's at certain points in time. I just take care of it and have learned my body and my daily life. Therefore, when I need to, I try to be as available as possible and not deviate from my availability in particular. Due to the fact that I provide services to other people, I am not someone who can sometimes go off the radar and hide somewhere at times and correct myself, although I do have those situations. I also provide services of a different nature, where I sometimes go out to people, I go between people, I attend conferences and there are times when there is a setback. However, me being a professional, I have to grit my teeth and carry on. This condition means that the main correction and the main help for me is hard lenses, hard type lenses. They are a little bit different from such normal lenses, but of course this is a topic for a longer conversation. If anyone is interested, they can contact me. In any case, there are situations in which such a lens can escape from the eye, fall out of the eye, remove itself, and so I, for example, have a problem with this.

Peter
I mentally stop seeing in one eye.

Monika Rachtan
That is, you can't see anything at all if you don't have these lenses.

Peter
If I don't have lenses I can see practically nothing, I wouldn't recognise you on the street, I wouldn't recognise you from a distance of say two metres.

Monika Rachtan
But you saw normally until these symptoms started to appear. Which is to say.

Peter
But it progresses very quickly. In the sense that if you don't take action with such preventive treatments, well, you can actually even lose your sight. If you don't take care of yourself, then what? Somewhere in there, in other interviews that I've heard you do, there have been various themes. That prophylaxis is not being taken, that you are not taking care of yourself, that was even said recently. What it can be is that there are big complications from it and that's what's most difficult about this one particular condition, because we could bring up different threads. But the most difficult thing about this condition is the decision-making, because in this condition we get to the moment. And here you can also talk a little bit about everyday life. The kind of dealing with a difficult illness. There is decision-making. Because just as the question was asked about whether I had contact with doctors, creep, whether they were typical. Typical let's say advice on the National Health Service. Whether they were private so it comes down to when I decide what form of treatment, what I would like to do about it. There are people around me that I know who downplay the problem for a period of time and then the problem fuels itself.

Peter
And the final stage in this type of disease is a transplant. Unfortunately, a corneal transplant. If the patient in question doesn't take care of themselves and doesn't take steps along the way and unfortunately doesn't have the predisposition to not have to, because there are different types, it would take a long time to tell, well, in practice there can be very serious, serious consequences. And what I'm getting at with this thought is that I had to undertake and consult a lot of doctors, a lot of people and make a decision myself. There was no one who told me this solution would be good for you and for 100%. I know no one will ever use such a statement, but on the 90% it will solve your problem, on the 50% it will solve your problem. It doesn't. There are conditions I suppose analogous to mine that no one will ever say this is a good solution. You have to make the decision, because we will not take the risk for you. You have to make the decision yourself and collect the data. Is this type of treatment a good one or another?

Monika Rachtan
But wait. Then what decision did you have to make? The most difficult one on this diagnostic and therapeutic path of yours?

Peter
I would have to go into detail, I will try to be general. But when the disease increases and aggravates, let's say, its course and you start to see changes in that ductus arteriosus, scarring on the outside and it's heading for a more difficult course, then you have to decide on the type of treatment and how you want to stop this progression of the disease. And there are different types of treatments. One of them is the so-called cross link king. It's so nicely called cross link king, which is an English association somewhere, some rope, something cross and so on. In practice, translating this into such, let's say an everyday situation that the viewers could understand, a podcast, it's a bit like doing hybrid nail cosmetics on the basis that doing hybrid nails means pouring some kind of liquid onto these nails, usually on a woman, and then using an ultraviolet lamp and making this substance, I don't know exactly what kind of substance there is, to harden it, that is, to create a kind of shell that will prevent changes, in this, in that eye, in that eye, and so on. And it's the same here, only instead of these specifics I don't know exactly what they are on the nails, you use off fish, off avalanches and appropriate portions of this fish, off avalanches, which you apply to one or the other eye and then you just shine this lamp to harden it.

Peter
And that decision is whether this is such a procedure or perhaps it will be to implant rings among the cornea, that is, to implant rings under the cornea of the eye to otherwise prevent the development of the disease. But at this stage. Option A or Option B bring further complications and, for example, one private doctor didn't mention to me completely that Option B would have a big impact on my daily life, and another doctor didn't, and even though these were private visits, man this is a decision on which your whole future life could look different. And it was a very difficult decision. It may seem like a trivial A or B, but it's not, because in option B life could look different. In option A it could look different and even though it's a private visit you still have to make the decision yourself. It doesn't matter if it's National Health Service or private. When you get to a certain point in the development of a condition, unfortunately, you have to make that decision yourself with the support of your family, your partner, your partner, or unfortunately there are also single people who have, who have some specific problems.

Peter
So I hope I have been able to answer. And say Lord.

Monika Rachtan
And tell me I understand that such a procedure has been carried out on you.

Peter
And in one eye as well as in the other, but it was necessary just to have sort of to be available, to be able to function, that and in one eye. I had the procedure done one year, then I waited a whole year to get that eye as functional as possible, because I would also have to go into detail, but only after a year in. I uploaded another one so that I could kind of have one eye available with similar functionality, while also stopping and arresting the progression, the progression of the disease. And I would just add that on the National Health Service there is absolutely no chance of getting in a reasonable time for such a procedure, because any step and pathway I would have to start privately. As if diagnosing the disease, any treatment and everything has to be done privately. And if the patient in question is unfortunately trying to get to a specialist who first of all knows the condition, which was a problem a while ago, now it's more common, which I'm very happy about, that and the content and the doctors also of primary care know the condition, so it's great that this is developing very, very much. But unfortunately first of all the place most recognised, maybe once I'm not going to give the most recognised in this area and in this disease it's the same getting into clinics.

Peter
In general, telephone contact is virtually impossible. That is to say, not at all.

Monika Rachtan
Something to eat, you have to register.

Peter
Probably yes.

Monika Rachtan
This is one place in Poland.

Peter
There are probably several, but this is one area. That's it, that's it, that's the area around Krakow, Sosnowiec and so on. But once I managed to get a call I gave up, because the deadline for the first inspector was five years from now, five years from now, and I had to take action myself. I learned that you have to focus on the positives, you can't just complain. If I hadn't focused on the positives and taken action myself, I probably wouldn't have seen it.

Monika Rachtan
It's amazing what you say, because when I listen to you I think you are my dream patient. Maybe I don't mean your illnesses, because obviously we don't wish such illnesses on anyone, and I'm very sorry that you've suffered such a severe illness, but how educated you are is amazing. I really wish that every patient, no matter whether they have diabetes, heart failure or cancer, had the desire to be educated in this way, because the healthcare system in Poland is what it is. We could complain a lot here, although I do and will host amazing experts on the programme who tell us that it is getting better. But there are some flaws. But when we focus on the fact that the doctor is bad, that the doctor is reluctant, that there are no appointments, that I can't, that it's not possible, I've just lost my sight in a few years. I am a profoundly disabled person and my life is what it is. But it's also possible to take that path, those symptoms if extreme, just an extreme path where I say, my goal is to live comfortably and I will do anything.

Monika Rachtan
I'm going to stand on my head to be in this place in a few years' time and be a healthy person, at least a reasonably healthy person who can function both in society, can have a family, a person who can just live a reasonably normal life. And that's why I think this is where you should be such a leader. Haven't you thought about setting up some kind of association to talk about how to be a patient? To be well looked after in this system, she has to manage First of all.

Peter
This is a difficult question. Rather. I have been socially active all my life, in various, different forms, and often, often this question comes up somewhere indirectly. Privately, I was thinking that if I were to go back to social activities, and I'm thinking about it slowly, so that what was also said between the lines, a little balance of life and work, it would be more of a hobby, I think, to educate young people a little bit, not even a little bit, somewhere in the period of 19 23 about nutrition and also about focusing on oneself, because a person being a student, a student or 3 or just a person of a certain age, such a dynamic person who is looking for entertainment, attractions, wants to know a little bit, a little bit about life, opportunities. It's not indestructible, it's not indestructible and making decisions at this period, at this period is, is, is important, is important, as to different areas, yes or even prevention, getting to know yourself and how this organism functions and how it works. So if I had to do that answering that last part of the question, I would feel good about that.

Peter
Because I felt that I was kind of leaving something behind and some kind of actually tangible value for. For them to just focus on themselves, on their own, on their health. And the first part of the question is the need for help kind of slipped my mind.

Monika Rachtan
Like I was talking about we have this type of patient who is just educated and who wants. And we have that type. That was kind of my summary of a little bit of what you said. We have this kind of patient who unfortunately is not educated and I was left. How do you motivate that to. To be where those, because conscious though. A patient, in my opinion, is a patient better taken care of if we don't get certain information about ourselves. That is, if we don't get it, we don't ask, then nobody will come and tell us. The doctor has 15 minutes in the office 20 minutes.

Peter
Agree. They agree. Already, already. I already know what I was thinking about during your speech. Psychological care.

Monika Rachtan
Did you benefit from as much care as I wanted?

Peter
I am trying. I am heading privately just through the National Health Service. Slowly. Speaking in zero-one terms. A substantial degree makes it a lot easier, i.e. you can use public healthcare on much more preferential terms, although not always. This would also be a long thread. But that may be about that in a moment. As far as psychological help is concerned, in my opinion, if I had to sum up my person and what you said thank you, I am also very pleased. What I'm getting at is that I had this disorder at a young age, let's say young, relatively young. Those 19, 21, 23 were somewhere in there developing the most, but I had time to work through certain things, i.e. to think internally. What I remember at the very beginning. It was a bit of a phase and a moment of denial, i.e. there is this illness, there are some solutions, but ok it is, because it is. I live on, but also.

Monika Rachtan
No.

Peter
Yes, but I also took action, so I don't know how to call it, I'm not a specialist and I don't know how to call it, but it was a bit of my task-based approach, because that's just the way I am. I have to take action, otherwise it's going to be bad, zero-one. I'm that specific, maybe other people are. Of course, this has to be translated into your own, internal in the sense of an individual situation, but, but this is the action I have taken. And what could I compare it to? To an everyday situation like this, where often when someone asks me about my eyesight defect etc., I'm asked about it. The most common question is what kind of eyesight defect do you have, that you say you can't see, and I can't see with glasses, I could go on for a long time, but the essence of it is that people often tell me I wouldn't touch my eye, my eyeball with my hand or my finger, in my life. I mean putting on a lens, for example, operating in the eye area. Yes, it's the person who wears glasses who doesn't have to take care of the hygiene of these eyes every day, because these hard lenses are characterised by the fact that they eat.

Peter
You have to take care of hygiene on a daily basis, you have to clean your lenses every day for a maximum of 2 years. So you have to take care of the hygiene of these orthopaedic devices. Therefore, this, this statement of mine was aimed at the fact that how is the only way to solve the fact that I can see at that moment like it was those 10 years ago, either hard lenses or not. You see? And even though I never wore correction on the basis of lenses I had worn glasses which stopped helping at a certain stage and it was said either you will wear lenses or you can't see. But the change was so positive for me that I remember that when I first put the lenses on they hurt. In the sense that you get used to it. It's a bit of a feeling of such a fly in the eye, that is. So. So it's quite unpleasant, but I remember that the change was that when there's a stop at the Main Post Office in Wrocław, there's a bench there and cars are driving. I didn't know at the time yet, I sat down and watched the women. I watched it straight as they looked, that I knew, that I looked, that I was so moved, that I could see that someone had helped me, that someone had guided me.

Peter
And it's kind of this whole path from responsible to metric that said I won't help. Then I somewhere had to work through certain things for myself, I said ok, you need to get on with it. I went to see a specialist. This correction was fitted, and as a result there was a chance to live a relatively normal life with some dysfunctions, because these lenses can be worn for a certain period of time. Some patients can't tolerate them at all. I don't either. It's a specific moment in the day, not all day.

Monika Rachtan
That is, how many hours you wear.

Peter
And if I'm forced to, it's long only afterwards. This has its consequences, i.e. I can wear them for example so comfortably two, three, four hours, but then I can wear them longer, but the next day I won't wear them at all.

Monika Rachtan
OK, so you also have to manage that time of yours so responsibly when you're a full-fledged disabled person. And tell me once you've taken off, then what?

Peter
I.e. I perceive the distances reasonably. Yes, it is like that. This again I would have to go into technical details. But there is a point at which the contents put on in patients who cannot see such a gap. It's very much this kind of narrow, narrow vision. They put on such glasses with such a very narrow still line and when there is such a very short slit, one sees through this slit. Why? Because you only look through a specific part of your eye in the horizontal plane. And I am able to achieve such vision when I close my eyes very tightly.

Monika Rachtan
But it's something you can put on some glasses for example.

Peter
Also no. It's very individual, it's how each doctor will answer, it's very individual, because some people can be helped by such glasses. To some they can't. To me, the tourist who fitted me with these hard lenses says let's try, let's try to fit glasses. Let's try and do something about it, so that you can also function in the evening or at certain other times of the day you're not able to, because the cylinder is so big that it makes me momentarily sick. It makes me momentarily sick, just as I am trying to squint. Even as a young person, I just wrinkle my face, some of my features have developed as a consequence of this illness. And when it comes to this kind of responsibility, I made a decision that. And I have observed that most of these difficult decisions, as has already been said today, have to be made by myself, and if I am to make decisions by myself, I have to be educated. And it's a cause and effect sequence for me, so I don't see any other option. Or I can give up as I said and get to that point where I'm motivated and I'll say hard, at most I'll lose my sight.

Peter
Strong statements. Well, but that's the way it is. I'm kind of pushing it out as well and to be honest at the moment it's like when some complication comes along, when I go for an examination and the doctor tells me and you have a new scar, I have a new scar because they just appear.

Monika Rachtan
Your back, don't you feel it? It's only when he tells you something that you go and you have to be prepared for anything. Yes.

Peter
Yes, and I go for a check-up. And even though these treatments should stop it, they don't always stop it. And there are patients who downplay the problem to some point and then there's no going back, no treatment. This treatment that I have had performed is not performable and it's over. And in terms of that cornea ruptures at some point and people have either a transplant or I don't know how I didn't get to that stage and I don't even want to, I don't allow that situation. It's not about remembering and focusing on the negatives.

Monika Rachtan
Yes, but I'm going to ask you about such a thing quite difficult, but I think the overtone will be very, very cool to this statement of yours. Because that's what I'm thinking, when you're 19 and for 19 years you've seen beautiful women, you've seen flowers, you've travelled still or men, you've generally looked at the world with healthy eyes. And then one day something started to happen. I see a little less, I see a little less, I see a little less. I'm 19, I recall, I'm studying, I go to discos, I play football, I do a lot of different things. And generally if I started my hair at 19, well I can buy myself a dye. I can say to myself ok, it's the fashion now. When something happens to my hand, I always have another one. But you? I think the most important sense was taken away. The sense of sight was stopped. And you had it in your head that tomorrow you could. Maybe you didn't have it, but it could happen that in a few days you would wake up in the morning and see nothing. So. And you talked about these difficult decisions.

Monika Rachtan
And I don't know how you did it. I totally don't know how you did it. And what did you say to yourself then? What did you say to your surroundings? Because there were probably times when you waited for the treatment and didn't join in. To put it in youth language like that.

Peter
Well actually at some point some complications started, some changes started and. And in my opinion. Well, it's really a question of this awareness and working through certain things, understanding a certain thing. I don't know if I did it right, maybe. Maybe I did before. There was a moment when it was a bit trivialised. I mean, I took steps, there was a correction, that is, the vision somehow became more stable, but the controls on my part were not perfect. It's not that all my decisions were, were, were sensibly made. There was a point when, despite wearing this correction, my vision started to deteriorate and there was a progression. I didn't really take those steps, not having perfect knowledge. I could have taken these stopping procedures two or three years earlier. I could have and I didn't take them and I didn't have that perfect knowledge. So it seems to me that, that what I have worked out for myself somewhere, is that communication between the doctor is the most important thing. It doesn't matter what arm, the private branch or the National Health Service.

Peter
It's that communication and wanting to understand the patient. But as we know, it is not always possible, it is not always possible because there is no time to have that conversation.

Monika Rachtan
I'm going to ask something else, because when I think of this young student who is studying hard at the polytechnic, at least for me, as a humanist, the polytechnic is really where I would like to end up. So you're in these heavy studies, Do you have classes, do you have colloquia, do you have any career plans? Did you have these thoughts when you found out you were ill and these symptoms were already bothering you so much? As if you also knew what could happen that you thought to yourself I'm throwing it all away, what's the point? I won't be able to see college anyway, after all I won't be able to work.

Peter
I don't think I allowed such a thought. No, she didn't even allow herself such a variant. And to the question also, the previous one was just kind of evoking that energy, that. That. That I also kind of lost the thought that I was aiming at, that I was aiming at the fact that complications are arising and that also indirectly answers this latest question of yours. That they were such, such comments having that. That despite the fact that I was making a decision about that. That I'm taking action, I'm doing something, it's pretty much ok. But then, when a complication arose, well there were actually moments like that, that. That one falls into such light states, a bit of such sadness and that. That. That there might be some more difficult variant of this developing. But what I hear and read somewhere now and. And my wife, who also supports me in all of this, well supposedly there are some directly proportional links of energy and attitude to how the body reacts. This is getting into a bit of that slightly metaphysical realm of Where, where, where care.

Peter
That calm, that energy, that foundation. Physiotherapy, psychology. And that wellbeing influences the development, the development of the disease. So I don't know if pushing it out was the right way to do it. I don't know, because I'm not a specialist in this field, but certainly what I heard from doctors and what I can repeat. Well if someone has an autoimmune disease, which is simply attacking this immune system on its own, in my case it's also related, because when I have my eyesight, it's very common with this corneal cone to also have skin problems, where it's called seborrhoea, this dermatitis, and it's just very common for people with this condition to have problems with spending. And it's very often said that if someone is stressed, feeling unwell, this condition and I know there's also atopic, it's a much more severe dermatitis. That's also what I hear from people who, who, who have these conditions. It's that when there's stress there are symptoms, when there's no stress these symptoms are certainly less, because again it's an individual situation, but if there's stress and I start to worry about it then indirectly it's a bad feeling, possibly some itchy skin there, not taking care of my diet like itchy skin is rubbing my eyes, Neither can I absolutely touch my eyeballs.

Peter
I mean hygiene yes, but minimally etc. It is not allowed to rub your eyes as I would like it to sound. If I may, of course, if you see children, if you see younger people rubbing their eyes with their fists very tangibly, very strongly, it means that something needs to be looked into. This is what I do privately. I used to do it quietly, as they say colloquially. My parents didn't even know I was doing it. I now know in retrospect and I was, that I had these eye sockets, I was all itchy, and I sat and comforted them. And it's also very much a cause and effect sequence. Often doctors say that mechanically normally you just damage those eyes. So in my opinion it all comes down to overwork anyway. I hope that's the answer to those two questions of overworking, understanding that, that psychology and wellbeing and maybe.

Monika Rachtan
Some.

Peter
To push it out, but in such a sensible way that you have to take steps, you have to act, you have to surround yourself with specialists if you can, well once the financial issues. 2 have persistence, if financially someone can't afford it, because you can get to it like that, we all know you can, but that path is difficult. It was with me too. I just make it so that I take private steps at the same time as I take steps on the National Health Service. Because unfortunately, if I were to, to put it mildly tangentially, perform such transplant procedures, the sums involved are so horrendous that hardly anyone can afford it. And unfortunately, such prophylaxis on the NFZ also has to be taken. You have to get through to this doctor at some point, but unfortunately I have been trying to get through for two or three months, and there is no option. It's just like you said. I guess I will have to go in person to sign up for the clinic.

Monika Rachtan
So you're facing a trip to the mountains, say to Silesia.

Peter
A trip to Silesia awaits me.

Monika Rachtan
You know, I'm still wondering about that, because we talk about this path of yours all the time, and also you told me before that you met good people on your path. Both the lady who guided you, but you also told me that it was at university that you could ask for some support for you. Very important, a bit of that kind of uplifting support.

Peter
Now I don't know if the emotional thread is one I would probably skip because.

Monika Rachtan
That's not what I meant. I was more referring to the fact that there is a lot of it and you need your eyes to study. And if these eyes are missing, then you are not able to, for example, read something, learn something. And I know that there were times when you asked for support. Not emotional support, just a human look at you and you got it.

Peter
Yes, yes, that's right. Here I was mentioning, I was mentioning that on one occasion somewhere, but, but the tutor gave me a bit more leeway in terms of preparing for the exam, because it was just such a moment where I was diagnosed. It was the kind of moment where once, despite everything, this emotional thread would come back a little bit and that once, that was a bit of a bucket of cold water for me, that there is something and and that the fact that I have a problem in this session, that is, in this period of time with preparing for these colloquia is related to eyesight, not to some laziness of mine, because when a person sees less, has a problem with reading, it doesn't even talk about this scale that I have somewhere. It's only when a person can't see and tries to read that he gets momentarily sleepy, doesn't his head start to ache and is unable to absorb, assimilate this knowledge. Already there I was beginning to observe that something was wrong. Even at a certain point I was already diagnosed and and again I was trying to catch that balance.

Peter
Well it was either that I could stay up all night and probably make it worse, because at that time I still didn't have the correction, or say to myself ok, at most you won't pass, you won't take it, maybe there will be another term, you'll approach it in a while, so it was also already a bit of a learning experience that not everything is stet unfortunately for me. And after this one it's in the next period or I'll pass it in the next semester, because the Polytechnic just gives such. Generally on a day-to-day basis students would also be another story, but what I'm getting at is that it was the support here once from just a human tutor that said to me okay, you can come in a fortnight, I'll give you a bit more time to assimilate the material and that was nice. That was the cool thing. I felt. I felt that there was that support, but also maybe a few positive words about the Wrocław University of Technology in general, because I think it's worth saying. One, that they support people with disabilities, they have a circle of students, student people, people with disabilities who. Which also supports such people.

Peter
In addition, they have interesting charity events where they raise money for scholarships for people with disabilities. That is, an active person like me, who was active socially. Somewhere out there in the student council I took various actions, or in the study circle I received it more than once, because it was a fresh creation at the time. I simply received financial support from the university as an active disabled student, which was also very nice in a way, that someone wanted to support me financially, and there are also so-called benefits. This means that if a student is in a difficult situation, he or she can apply to the university, through the student government, to receive such an aid. If I remember correctly, I received such assistance twice. It was very helpful because the correction I was wearing at the moment, at the moment I can't go back to the rates of, let's say, 5 7 years ago, but now I am at the stage of financing new contact lenses. Well, a set of such lenses is in the region of £2,000 for two years. Admittedly, for two years it's not that bad, but how do you.

Monika Rachtan
One-off for.

Peter
Student, for a student this is a solid amount.

Monika Rachtan
I'm asking you about this support of people, Because I think about the fact that people often don't say that they have a disability, they hide this fact. And when you said, you got support from the tutor, you got support from the university. You had a completely different life when people knew about your problem. It's not that in Poland we all ridicule disabled people. We consider them inferior, that we want to get rid of them from the system, because we think that they are somehow, well, don't want to use the word useless, but that maybe they bother us, that we have to support them with some resources. No, they can really give us a lot from themselves too, and I think it is worth talking about this disability so openly, because it is nothing terrible, and above all it is nothing bad.

Peter
Yes, that is true. And also there are situations where with me, for example, you can't see like that every day I can. There might be a situation where I'm walking somewhere with a person supporting me because I don't have my lenses. Even recently I was walking in the Poznań market square and the Poznań market square is all in the works and it was very windy. My biggest enemy on a daily basis is the wind, because if it blows into my eyes, it dries those eyes out, and when it's dried out that foreign body in the form of lenses is much more noticeable. It's uncool, intensely uncool. And I'm actually walking around as a socially perceived, able-bodied, reasonably well-groomed man all of a sudden, I'm standing on a street corner and I can't move. I have to have support just from my wife, who catches me by the hand somewhere. We travel around, but it's just something I've worked out for myself somewhere. But what I'm getting at with this thought is that there are people who are more visible and whether it's a person with a white cane, whether it's a person, whether it's a person in a wheelchair?

Peter
I'm sure it's nice if we support such a person socially somewhere. I simply identify with such a person and I also try to go, if I have the opportunity and the time, to help them get on the tram or to take a seat, because it hits me, it hits me hard. If it could be some next step. I don't allow that to happen because I try to take care of myself. But. But it's so tangible, But what you said, that, that, that a person is healthy at some point in their life, but they never know if in three days, four days, six months. Well, it gets fatal, tangentially a little bit, but you can change that way of approaching life and what I think is important is the support of other people. People who surround you around. But well in my opinion it's backed up by the support of psychology professionals, psychologists, but I think it still takes time. Because even I go in the sense of I mean as a person who has already worked with and processed various topics.

Peter
In terms of working with primary care etc. If it rings out and says out loud that I would need a referral to a psychologist, I would want to talk to someone. Socially it might be perceived differently, that this person probably has some problems. I don't know if I want to deal with that person. And a psychologist is not only about psychological problems, but also existential ones, where a person has to work out some solutions for themselves.

Monika Rachtan
Not everyone is yet ready for this perception of psychological help in our country. However, we more often even confuse a psychologist with a psychiatrist and say, don't want an ugly word, but someone who goes to a psychologist is a madman, or someone who goes to a psychiatrist is a madman. Isn't that the case? Depression, anxiety disorders Nowadays these are very normal problems that really affect many people in our country. Just not everyone has the courage to talk about it. But I would like to ask one last thing, because this conversation of ours is getting very long. But you said about your wife and you said about support. And this is, it seems to me also a very difficult, personal topic, so I don't know if you will agree to answer this question. But at what stage in the relationship did you tell your wife about the disability?

Peter
By. I'll certainly answer, only the question is difficult insofar as I can't remember a bit. I don't remember a bit, but I didn't have a problem with it. It seems so to me.

Monika Rachtan
I would just have to think about it or ask my wife.

Peter
Or ask your wife this, this, this. That would seem to me to be good, but, but our relationship just from the very beginning, has always been built on such general honesty. Anyway, I think that in any relationship, in any relationship, not even such a closer one, it's only good to bet on honesty, because then everyone knows what it's all about, what they're building this relationship on or whether they felt cooperation. Just. But, but here we just got so matched that it was possible, that. That we built on that. On that sincerity. But I think privately I was at a stage in my life where I was rather unapologetic about it, that. That I had these lenses, that I had this no-seeing thing. Admittedly, I didn't go and paint at university and amongst my peers that listen, hey. But it's like I don't know, it's common enough. That said, maybe I'll end on such a sympathetic, kind of indirect joke, that you asked about support at university. It rains a lot of stories from the period of this university, well because that's where most of it happened in the case of this one.

Peter
With this disease, there were the most variables and and dynamics. As to my, as to my everyday life. And answering the question indirectly, that's what I was open enough to say somewhere in the lectures, that I say could you or could you read again? Because unfortunately I can't see and remember and you can have different approaches to this, that is, either the person you are asking to behave in this way has an approach that is so normal, human, or not really. I can have two stories. The first is that the tutor didn't know enough already to see that I was learning reasonably well. But I remember such a joke that he said very well. Mr Peter, for you two points instead of one, because Mr J. So, however, he answered I managed. I managed to give the correct one, but unfortunately I just have a reading problem. But it was sympathetic enough, such a joke. All in all it felt cool that sort of to such an everyday level this, this my let's say dysfunction was brought down, but again in a different direction.

Peter
I remember when I started having problems with my eyesight, because it was already in high school. It was in high school when you started having your first sight problems. And I remember feeling so bad internally that it was impossible to see. There was something on the projector being projected. And what, it was just the beginnings, so it wasn't some super resolution. You also didn't care about the lighting conditions, so that if there was a projector it would be visible. It was just that kind of classroom. In high school we would project something there. And I asked, I asked if you could give me that address again, because unfortunately I couldn't read it. And I remember that the reaction was not very positive from that instructor. And then I remember that I got a little bit inside myself and went on a break and said what I thought about it.

Monika Rachtan
And what was the reaction.

Peter
Fortunately such a positive one in the sense that. Because maybe, you know, students make jokes to diffuse also the very sympathy for the other side, so maybe it could have been perceived as a joke. But I think what I said, you have to call a spade a spade. I then remember saying that I just wish you would remember that I really am a person who doesn't to see, even though I don't carry. I don't think I remember if I wore glasses at the time, but that it was in no way directed at you as a joke, I just needed help to read it. Well it would have been nice to. That you would just remember that. That I am such a, such a specific person. We don't have, because it wasn't a big, big high school, but I remember so internally this person, because as a presenter I liked a lot, it kind of lost me a little bit with me energetically, and because I wanted it to not be weird in the future, I thought I would explain why there was such a question and where it came from.

Peter
Situations vary either someone reacts kind of positively, openly or not really. It's always, but you have to try to explain to yourself this, that, this, just to explain. And as far as the situation with my wife kind of at some stage, I just don't remember at what stage it came up, but well I had it worked out from the very beginning what I'm saying is that I kind of knew that it was, that it existed, that it was my everyday life and I wouldn't change it and that if someone wants to be in a relationship with me and live with me every day. It has to be someone who accepts that and in the more difficult moments will just support me.

Monika Rachtan
I am very happy that you found such a person. I keep thinking about what a well-rounded patient and probably human being you are. And like you say, that certain things need to be worked through and that you need that help from a psychologist. I'll tell you that I don't quite agree with you from our conversation either, because of course I can't talk about all the threads of your life, but I think that when it comes to the issue of the illness and this life with the illness I think you've got it very much sorted out. And so I think to myself, I would like that after these 26 episodes of my podcast, every listener at least in their own field, for example, if I'm hosting an expert in the field of let's say cardiology, that after this conversation they are at least 10% educated like you are. Then this system will be easier, easier to embrace healthcare. And what you said and that was amazing too. As a 30 year old with a very serious illness, with a disability, you talk about empathy all the time. And it's not about empathy for the person who is ill, it's about the empathy of the person who is ill for everyone else they meet on their journey.

Monika Rachtan
It's very difficult to get to that state at all, but I think it's really worth it to also look at the world in that way, to look at people regardless of whether you're a patient of the general public. I think it's worthwhile in human relationships to have that empathy and to look at yourself as a human being again. You will probably hear this phrase many times in the podcast, but that's how I think every patient should look at the doctor they come to as a human being. And the doctor has no choice but to look at the client as a human being. So that's what I wish for myself, but most of all for you I wish for you to meet these cool, good human doctors on your way. Ideally, you should have to use them as little as possible. Prevention as much as possible, but I hope that there will be very few such situations when you need the help of a specialist. Thank you so much for sharing your story, for this honesty and for being here first and foremost for the patients.

Peter
I agree, I like to share knowledge. I'm very happy to do that and if there's an opportunity I'll be happy to answer more questions, even not as part of the podcast. If anyone would like to approach me e.g. how, how, how? What might the process of getting or obtaining disability status look like? Go ahead and write, I'd be happy to help.

Monika Rachtan
I think you are also a help when it comes to eye diseases. You have that if someone is that 20 year old who is observing symptoms in themselves and is going to make a decision about treatment then and substantively though you say all the time that you don't because you're not an expert. But I think the emotional support you have for such a person.

Peter
I am so keen. I know it is, I know it is needed, and for what? What I would also like to call for. If I may, this, this, take care of your eyesight, please, and once in a while it is good to do and to go and see an ophthalmologist, not only the OPS, who, of course, also have a lot of knowledge, but nevertheless an eye examination, a fundus examination, a more serious examination, maybe not more serious, but a more meticulous examination. There's just the selection of glasses and looking for these, these glasses, orthopaedics or whatever you want to call it. Generally, it's not the only solution to sight problems. If someone says to me in conversation with me very often and because I also need to get my glasses fitted, I say if you think so, the first thing is to invite you to see an eye doctor, to stay, to be examined, and only then to get the correction, because it can happen. It could be that the correction will be selected and the disease will develop in the process. As it was with me.

Monika Rachtan
Then I leave our listeners with this appeal. Ladies and gentlemen, let us use specialist doctors if we have the National Health Fund available, and if it is difficult there, well, if something happens, you cannot be afraid of this commercial healthcare either. You can make use of it, and wait, for example, in the queue to see a doctor on the National Health Fund, and then realise these costs.

Peter
You cannot give up.

Monika Rachtan
Yes, you can't give up. Thank you very much for your attention and welcome to the next episode of the podcast. First up is the patient, which is next week.