The more you know, the less you are afraid

Judyta Borchet, 30, from Gdańsk, Poland, was diagnosed with kidney disease at the age of 27. She shares her experience with her diagnosis and the challenges she faced in coping with her disease. As part of her process of coming to terms with her disease, she takes the time to raise awareness about kidney disease and reminds us of the importance of early diagnosis.

I have a biopsy-confirmed IgA Nephropathy (IgAN). Before my diagnosis, I had little knowledge about chronic kidney disease (CKD) or symptoms that should have alarmed me. I did not know anyone who had chronic kidney disease. I was diagnosed when I was 27 years old. When I was diagnosed, I was during my Ph.D. studies, and I was convinced I am strong and healthy. Like many young people, I (sadly) was not paying much attention to routine checkups, as I had the misconception that ‘young people don’t get sick’. If only I had known how wrong I was.

 

My kidney disease was discovered by accident. I was feeling very low on energy, had repetitive anemia problems, and had trouble with sleeping (I had a strange feeling like my hands and legs were ‘on fire’/ about to burst). My GP doctor noticed that (1) I have way too high blood pressure for a person who is my age and that (2) after the urine examination, she noticed the proteinuria. The next step was kidneys USG [Editor’s note: Kidney ultrasound] (which showed my kidneys are smaller than average). My GP doctor made a wise decision to refer me to the hospital for a kidney biopsy – ‘Just to check if you are ok’, she said.

 

So I went to the hospital and had a kidney biopsy at the Nephrology Ward of the University Clinical Centre, Medical University of Gdańsk (Oddział Nefrologii, UCK Gdańsk). I felt strange, as I was the youngest person in my hospital room. I felt like I am surrounded by elderly people, and that I did not fit there. After all, I was convinced I was okay, maybe didn’t need the biopsy at all, and I had little knowledge about CKD symptoms. I remember being afraid of the biopsy procedure, but I could count on enormous support from the hospital staff. The doctors explained everything to me and offered their support. After the biopsy, when I could not get up from the bed for 24 hours, I felt that this was really happening to me, and then I finally started googling information about CKD. 

 

After a few weeks, the biopsy results came. The doctor explained to me that I have a chronic kidney disease called IgA Nephropathy, that I am lucky to be in good condition as my kidney function is mildly reduced, and that I have to take care of myself and do regular checkups. It is hard to predict how this disease may progress. IgAN is tricky; in some people, it progresses fast, in others – slowly, or even not at all, and patients remain in good condition for many, many years. However, I did not feel calm. The thought that (1) I have kidney disease and (2) that it is so unpredictable seemed very scary. My diagnosis really broke me, as all my life I thought I am a strong and healthy person. I became very worried and negative about the future. The fact that there were not many treatment options and not much information available (especially in my native language) was not helpful.

As time passed, my attitude changed. After the first shock and denial were gone, I started to gather more knowledge. The more you know, the less you are afraid.

I joined CKD patients’ online communities (Facebook groups – a Polish one, and one from the UK). I started chatting with other IgAN patients, for example, learning about their experiences and kidney-friendly diet. I started reading scientific papers on IgAN and looking for educational resources. For example, I attended an online conference for patients organized by the Leicester IgAN Research Group (many lectures are available here). I also discovered World Kidney Day’s website and Facebook profile.

I understood that I was very lucky to get my diagnosis early. I was neglectful when it came to checkups and now, I am ashamed of that – who knows if my IgAN could have been detected earlier. That is why now I am trying to spread the information about kidney disease, kidney health, and the importance of regular checkups. I try to educate my friends and family members – both in private talks as well as via social media (e.g., sharing educational graphics and articles on my Facebook and Instagram profile). If even 1 person gets convinced to do a blood and urine examination – I call it a win!

The funny thing is that after some time, my IgAN made me care more about my health, follow my dreams, or even balance my work and private life more. I am stable now, but of course, I am still worried that I may again not be one day. Until then, I try to embrace life and do the best I can do. If it all is about gathering moments – I want to have as many good ones as possible! Stay positive, learn more about your CKD, educate other people, tell them how important it is to do checkups (#creatinine, #proteinuria, #bloodpressure), follow clinical trials, and never give up.

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