Throughout the process of starting on dialysis I’ve been relieved to receive answers to my endless questions from different groups of people. The first group who I’ve been consulting on a continuous basis are my medical team. My doctors and the dialysis sisters who I’ve met have consistently been happy to answer my questions about the medical side of what is happening to me. It’s help me make sense of what has been a massive change in my life.
However, sometimes the advice I’ve been looking for isn’t about the medical details. It’s about the more personal aspects of being on dialysis. I’ve wanted to learn from the experiences of other dialysis patients, or dialysis warriors as we typically call ourselves. And for those I have turned to Facebook, as I often do.
Back in December 2024, when I received the date for my AV graft operation, I began to search for Facebook groups related to dialysis. I found several groups, although many of them seemed to be resources for medical teams and nurses working with dialysis patients.
Eventually, I discovered a group that seemed to fit my needs perfectly. It was a large group of dialysis warriors, sharing their experiences, solutions and ideas of how to make treatments as simple and painless as possible. I requested to join the group and, later the same day, was accepted.
I have asked several questions and have received wonderful input from the group. My queries have ranged from topics like what to take with me when I go to the dialysis centre, to how to include soup into my diet considering my liquid restriction. Which reminds me, I haven’t discussed that particular part of my new reality, which I must do in one of these articles.
It soon became obvious that most of the members of the group were based in the USA. It became equally apparent that the process there differs slightly from what we do here in South Africa. Yes, I was able to gain valuable support and advice on many of my queries, but sometimes the information didn’t quite match what I was experiencing.
Which explains why I was so delighted to see a post on that group sharing another resource – A Facebook group for South Africans on dialysis. I have been a member of that community for almost two months and find it a great source of information targeted directly on my situation. In part, I enjoy engaging with other South African dialysis warriors, and it is a relief to know that there is a large local community going through the same experience that I am.
Overall, I find the global dialysis community exceptionally welcoming and willing to share their solutions and thoughts. My interactions with the groups have also highlighted that everyone’s journey on dialysis is unique, as are our needs and our attitudes to the treatments we’re undergoing. It is also important for me to mention that both groups make it clear that nothing shared on the community should be taken as medical advice and that you should always check first with your medical team.
I’ve made no secret of the fact that I consider dialysis a privilege that allows me to continue to live the life I choose to. I hope that feeling won’t change.
But I also know I’m fortunate that I haven’t yet experienced many of the side-effects that seem to impact many patients, and for that I’m grateful. From the groups I’ve learnt that many dialysis warriors struggle with side-effects that leave them feeling ill, dispirited and in pain. It saddens me to know that this is their experience of this life-giving treatment. In time, I too may experience more of the negative effects and, for now, I’m thankful that I am spared these.
Overall, I’ve found the Facebook groups to be a useful tool that have helped me navigate what I’m going through. If you live with a chronic kidney condition or want to learn more about what dialysis is like, I recommend joining one or both of the groups. I’ve included links below.
Here is where to find the Facebook groups:
LIVING!! On Dialysis
https://www.facebook.com/groups/livingondialysis
Dialysis Support & Talk South Africa
https://www.facebook.com/groups/dialysistalksa
