Az EULAR Kongresszuson voltam Barcelonában, 2025. június 11-től 14-ig.
Az EULAR éves találkozója, a reumatológia első számú rendezvénye hihetetlen lehetőség arra, hogy kapcsolatba lépjünk a terület szakértőivel, hozzájáruljon a tudományos párbeszédhez, és feltárja az úttörő kutatásokat. Ragyogó elmék, élvonalbeli kutatások és az immunológia jövőjét alakító szenvedélyes szakemberek vettek körül.
Sok barátot, betegtársat és támogató orvost ismertem meg, és sokat tanultam. Csodálatos napok voltak.
Szeretném honlapomon közzétenni a 2023-ban az Edgar Stene pályázatra beadott pályamunkámat, amelynek címe: „Mennyire javította az életemet a jobb minőségű kommunikáció az orvosommal?” (Ez egyelőre csak angol nyelven érhető el, hamarosan „visszafordítom” magyarra.)
Zoltan Purgel: How better communication with my doctor improved my life
(EULAR Edgar Stene Prize Competition 2023.)
I was very young, essentially still a child, when I was admitted to an active clinical ward. I was 23 and I was experiencing fluid retention in my feet and eyelids. I felt weak and I was suffering from fatigue. Everything happened so fast and unexpectedly.
I was admitted to the Internal Medicine and Nephrology Department at the University of Szeged Clinical Centre where the lengthy investigations began; eventually, the kidney biopsy results confirmed SLE. Unfortunately, my kidney function was so severely impaired that I needed to undergo acute dialysis followed by plasmapheresis and cytostatic therapies.
I was a difficult to manage, tense and despondent patient. Mentally, I found it very challenging to have to come to terms with such a serious disease at such a young age. I used to have an active lifestyle with lots of activities. After spending 60 days in hospital, I was allowed home for a week. Luckily, after three months, my kidney function had improved and I no longer needed dialysis treatment. This meant a lot to me at the time and gave me the strength to keep fighting.
From the very beginning, the person in charge of my care was the senior professor at the Nephrology Department and I also had my follow-up appointments with him. Though my condition was improving significantly, I did not initially have a good relationship with my doctor. This was all down to me; I was impatient, tense and apprehensive of further tests and more medications.
I believe the relationship between me and my doctor improved significantly when I opened up to him about my fears and insecurities and the mental struggle of living with this disease and also talked about my personal life. This was an important milestone, as from then on, my doctor was also more open and approachable. He told me that he had three sons and that he always thought of me as if I were his fourth child. From this moment on, not only our communication but everything else started to improve. Previously, I had been terrified of any new drugs and their side effects and used to find it hard to make the decision to change my medication.
Then, I started to strive for good communication and a good rapport. I would arrive for my check-ups well-prepared. I would have notes specifically on what medication I was on at the time. I also kept a blood pressure diary which made it easy to see several months’ blood pressure readings taken at home. I also kept a diary of episodes of feeling unwell and new symptoms. I always brought along a chronological list of discharge summaries and surgical interventions. On the day of the visit, I would record my body weight, so I always arrived with up-to-date information. Or for example, if I wanted to ask about something, I would always think ahead and decide how important it was and how I would formulate my question. Whenever a new clinical study came up in discussion, I no longer objected. I listened to what the professor had to say and in turn he also listened to me. I never refused to take part in a study, I never again said no to my doctor; instead, I took his suggestions on board 100%, and we effectively made decisions together.
I would like to point out that in Hungary, doctors and healthcare professionals are a lot more overburdened and the waiting lists are longer than in other EU countries. Proportionally, there are more patients for one doctor, so doctors have less time to spend on each patient. I would like to emphasise that my doctor was always available by phone and always helped me whenever I needed it. If my question was not urgent, I was encouraged to send him an e-mail. One time, a strange rash appeared on my legs. I took a photo of this symptom and sent it by email. My doctor acted promptly, and the following day, it was confirmed in the Dermatology Department that it was a case of vasculitis. We put a plan in place about which of his colleagues I could contact in case I could not get hold of him immediately.
I believe that good patient-doctor communication is an invisible but very effective “medicine”. It is important that the patient has confidence in the abilities of their doctor, that there is mutual trust and that all important decisions are taken together. Normally, SLE patients are treated by multiple doctors and therefore it is also important that the doctors treating them also have good communication with one another.
When I became the head of the Hungarian Lupus Group, I often asked my doctor for advice on various matters concerning the group. He accepted my invitation and gave a very interesting talk on kidney involvement in SLE at one of our patient forums. I received help from him on multiple occasions later on too, for example, with recommending doctors as speakers or choosing venues for patient forums.
Naturally, I am also trying to look at the situation from the perspective of doctors and support staff. Over the years, I have had discussions with several doctors about the possibilities of effective communication. In this regard, I have to mention first of all that instead of helping, the COVID pandemic only hindered adequate doctor-patient communication. During this period, at times it was even difficult to speak to your GP on the phone. For the time being, the pandemic era that involved potential immediate lockdown measures is over, and hopefully for good in Hungary.
However, the workload of doctors, as mentioned above, has not eased and is still enormous. I have talked to both doctors and patients about this matter. My doctor friends have highlighted that due to their jobs being so fast-paced, it is hard to find quality time to communicate effectively and honestly with patients and/or relatives. Yet this quality time is so badly needed! This, however, would require that certain key conditions and developments materialise. These instances of quality time would need to be separated from working hours. There should be up to an hour each day dedicated to this. Obviously, you cannot fit all patients into one hour a day, but if an hour was available each day, it would definitely be a step in the right direction.
At the end of my essay, I would like to mention that, since my diagnosis, my favourite hobby has been nature photography. Out of respect, I invited my doctor to my first ever solo photo exhibition, but I knew that he was exceptionally busy and the exhibition venue was far from where he lived, so I did not really expect him to attend. Much to my surprise and delight, he came and witnessed one of the most important events of my life.