Consumer Editor, Cochrane Kidney and Transplant
Ten years ago, when I was first diagnosed with chronic kidney disease (CKD), if anyone had told me I would be living well with kidney disease, I may have just laughed at the thought. The idea of a chronic illness with no cure and living well seemed to be opposing concepts. Now, looking back, it has been a slow road and at times very bumpy, but I definitely love my life and feel that I live very well with kidney disease. I could never have dreamed when I commenced peritoneal dialysis seven years ago that my life would be as interesting, challenging, and as adventurous as it is now. I enjoy gardening, travel and returned to do further study, which is something I have longed to do.
Our journey with CKD is fraught with decision making and choices, and at times this is very overwhelming, particularly to people who may not have had much experience with healthcare settings or health issues. So much information is readily available on the internet regarding kidney disease, but it often contradictory, further confusing patients and their families, already trying to make decisions under extreme pressure. There are Facebook discussion groups, with many people ready to offer an opinion and a story of their experiences, “Dr Google” at the end of a search engine, and family and friends readily available with advice, even when not asked for. It can, at times be an overwhelming experience trying to navigate the information and determine its legitimacy, all the while being unwell, tired and very unsure where to go. One of my kidney friends followed advice on the internet regarding herbal remedies for kidney disease, which actually exacerbated his condition and contributed to his worsening kidney function.
Each decision we make regarding our care has an impact on our prognosis, our families, but especially on the quality of life that we experience at each step of our CKD journey. For me, this has always meant that I am consciously aware of what is important to me and my family, to try to make decisions that assist with my goal of living the best life possible, no matter the stage of my disease or treatment for it. I have learnt along the way that I have reliable sources of information and not so reliable sources, particularly when making decisions that impact my care. My working relationship with my specialist team of doctors, nurses and allied health professionals is one of my most valued inputs for decision making. I also rely on reading research literature which at times can be difficult to understand, but for me the Cochrane Kidney and Transplant Plain Language Summaries of topics has been an invaluable source of knowledge to me and my family.
Many people with CKD and their families are unaware of Cochrane, what it is all about and where they can find free access in Australia, to all the plain language summaries (PLS) of all the Cochrane Kidney and Transplant reviews. The goal of Cochrane is to gather and summarise the best evidence from research to help people, doctors, researchers, and health professionals, to make the best-informed decisions about treatment that they can (https://www.cochrane.org/evidence). The plain language summary at the start of the document sets out to provide a short, simple summary of the important facts in a language and format that is easily understood by non-research people, but equally due to its ease of reading and length, is utilised by many health practitioners and researchers too.
Some of the information that I read to keep me living well with kidney disease include, but are not limited to:
- My diet – this is different for all stages of kidney disease and one of the areas that can significantly impact my blood pressure, weight and energy levels.
- My sleep – Prior to my diagnosis with CKD, I slept well and a lot. This has not always been the case post diagnosis and specially on peritoneal dialysis and post-transplant. Particularly leading up to starting dialysis and being on dialysis, one of the biggest impacts on my sleep was restless legs.
- Exercise – a significant factor in my weight management and mental health wellbeing is my ability to exercise safely. There is limited information available as to how to do this safely.
- Bone density – part of my ongoing post-transplant medication regime is steroids, which can have an impact on my bone health, this combined with being a post-menopausal female in her 50s, puts me at a greater risk of bone density issues.
- Itchiness - while on peritoneal dialysis, one of my biggest issues was itching. It was so constant, and it made sleep hard. No one had any solutions and I truly did not understand what was causing it.
- High blood pressure – this has been an ongoing struggle for me since diagnosis with CKD.
IgA nephropathy – This has been the underlying issue with my kidney disease
The most important part of my living well is self-management where possible and being able to make decisions that are in my best interest and are well informed. For me to understand why it’s important to do these things and not just be told its important, is vital. I look forward to living, learning and continuing to make the informed decisions I can, by relying on my care team and reliable and tested information in a format that is easy for me to understand, for as long as possible.
The World Kidney Day 2021 position paper – Towards Patient-centered care for people living with kidney disease presents top line
World Kidney Day 2021 Scientic Editorial - Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere. Kidney International 2021; 99: 278-84