Published 11 May 2009, doi:10.1136/bmj.b1595
Cite this as: BMJ 2009;338:b1595

Practice

A Patient’s Journey

Polycystic kidney disease

K Schipper, PhD student1, Tineke A Abma, associate professor medical humanities and research coordinator, department of medical humanities1, Ronald J Hené, consultant in nephrology2, Guy A M Widdershoven, professor in medical ethics and philosophy1

1 VU Medical Center, EMGO Institute, Department of Medical Humanities, Postbox 7057, 1007 MB Amsterdam, Netherlands , 2 Consultant in Nephrology, University Medical Centre Utrecht, Heidelberglaan 100, PO Box 85500, 3508 GA, Utrecht, Netherlands

Correspondence to: T A Abma T.Abma@HES.unimaas.nl

Polycystic kidney disease is inherited, so most patients have seen how it has affected their relatives. Young adult patients have no symptoms and need no drugs, but kidney function will slowly deteriorate

The first 150 words of the full text of this article appear below.

My journey on the "PKD path" started when I was a child, but my family’s journey began earlier. My grandmother died of polycystic kidney disease (PKD), and my mother was diagnosed as having it shortly after my birth, after having a cerebrovascular accident, which she surprisingly survived. The doctor told her that she shouldn’t be afraid: "She would be able to raise her own kids." He was right; she only started dialysis after several years of having nausea and tiredness.

When she started dialysis I was 16 years old. I always knew that my mother had a hereditary kidney disease and that I too might have it. But I hadn’t understood the consequences of the disease and its impact on life. I only knew that my mother needed to take her daily medicines and I always thought: "If this is PKD, then I can handle it. It’s not that bad . . . [Full text of this article]


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