Personal stories

It’s all about communication … and cheese

Bill Dickson is a kidney patient and member of the Nottingham Team for Transforming Participation in Chronic Kidney Disease

A health crisis 10 years ago was when Bill learned that he had only ever had one kidney. Not so bad in itself but the kidney he had was only working at 40% functionality. Listed for a transplant for six years, while dialysing successfully at home (often keeping very odd hours to fit in with work), Bill kept working until the day he got the call.

Of all the kidney care Bill has received over the years, the most important element he believes, is communication. Bill has medics in the family so had people he could call upon to answer his questions and help him get the information he needed. After his transplant Bill joined the Patient and Public Involvement Group at the hospital where he had been cared for, and he thinks this has been useful. “Sometimes it’s just the small things that aren’t right when you’re in hospital. Things that can easily be changed. For example, after my transplant I was on the ward and hooked up to three drips but was determined to use the bathroom myself. I found that the loo roll was behind me and out of reach so at my first PPI meeting I mentioned it and within a day it was moved. Just a small thing, but these small things mean something big when you’re trying to maintain your dignity and independence”.

Bill continues “After my transplant I was determined to get my life back on track and at 68 I’m still working pretty much full time. I’ve been twice to the Transplant Games and I’m involved in the PPI in Nottingham and I assisted in restarting the Derby Kidney Patients Association, and now of course I’m involved in the Transforming Participation in Chronic Kidney Disease (TP-CKD) as a member of the team. I would say the most important thing about learning to live with kidney disease is communication. And that’s not just you as an individual but also your partner, your family, your clinical team. Don’t be afraid of telling people about your dialysis or transplant.  We need people to understand and be accepting and most I find, are generally very happy to accommodate you. Talk to your clinical team!!”

“I’m in a good position; I manage my drugs myself, adjusting the dose and I’m now stable with my new kidney working at around 40%. I still work full time. Yes, I’ve had some ups and downs but I’m scared of nothing. As a kidney patient you have to modify your lifestyle but can then achieve a lifestyle that suits you – you don’t have to change everything. You can live well with kidney disease and my advice to anyone would be don’t give up and don’t let dialysis slow you down, stay active and try to keep fit – it helps. And what’s more, when on dialysis I found I can buy a synthetic cheese with low phosphates which I could eat in moderation – life just gets better and better!”