Closing the Diagnosis Gap: Navigating Chronic Kidney Disease in the Young and Fit

Benjamin Stokes, 34, from Maidenhead, South East England, recounts his compelling journey through IgA Nephropathy, a diagnosis he received at the age of 22, leading to End Stage Kidney Disease (ESKD), and ultimately to a life-changing kidney transplant. In this poignant narrative, he shares the hurdles of accessing care, the impact of gaps in early diagnosis, and the role of family support. Reflecting on the national healthcare system, treatment costs, and his role as a Kidney Research UK Community Ambassador, Benjamin provides recommendations for policymakers to elevate awareness and support kidney patients on their journey to recovery.

What is your diagnosis and/ or your experience with kidney disease? Can you briefly describe your experience, or alternatively, do you have a close connection to the topics of kidney health and disease?
I was diagnosed with IgA Nephropathy at the age of 22. At that stage, my kidney function was around 40%. Despite the condition being managed, my kidney function continued to decline and at the end of 2022, I reached ESKD. I was lucky enough to receive a kidney donation from my cousin on 13th October 2023. I am recovering well, and so far my new kidney is doing a great job. 

If you are a kidney disease patient, could you describe the treatments you have received?
Initially, my condition was managed just using a class of medicines called Angiotensin-converting enzyme (ACE) inhibitors. This was to protect the kidneys and keep blood pressure in a healthy range. Dapagliflozin was added more recently, about 2 years ago, and I took that until a couple of months before my transplant.
As a result of keeping an active lifestyle, with frequent exercise and healthy eating, I managed to stay relatively well despite my kidney function being so low. 

Have you faced any barriers in accessing CKD treatments, and how would you describe those barriers?
The biggest barrier was the travel required to the various appointments, especially regarding the transplant. 
Throughout my care, my consultants were based in Reading. This is only about 20 minutes from home. However, Reading does not have a transplant centre so I was referred to Oxford for everything to do with the transplant. Oxford is about an hour from home. 
The actual operation was in Coventry due to increased availability. That is about 2 hours from home. Whilst we were in hospital, my mum and aunt (my cousin’s mum) paid for 5 nights stay in a local hotel so they did not need to commute back and forth.
My transplant aftercare is in Oxford, so I am still having to make that commute once a week. Luckily my mum is able to take me there whilst I am not allowed to drive.

My IgA Nephropathy is presumed to be as a result of me having IgA Vasculitis as a child. When I was discharged after 6 months, there was no mention of possible kidney issues later in life. If there was, I am certain my family would have had my kidney function checked as I grew up.This could have diagnosed the IgA Nephropathy before it did so much damage.

In your region, how do you assess the availability of quality treatment for CKD? 
Whilst I am lucky enough to have a family that has supported me throughout the process, and is always willing to take me to appointments, I am fully aware that many patients do not have the same privilege. Hospital transport is sometimes available, however, this often involves having to wait around after appointments for hours at a time. The last thing anyone would want after spending the day in hospital!
That being said, I could not speak more highly about the NHS (National Health Service UK). Especially during the transport process. Every nurse, doctor, and consultant I have encountered has been incredible. They made the most difficult period of my life that little bit more bearable., especially 

As a patient, have you been informed about dialysis alternatives other than hemodialysis (e.g., preemptive transplantation or peritoneal dialysis)? 
I was informed about the options for dialysis, and it was decided that I would have peritoneal dialysis if it was required. I was lucky enough to hold out long enough to have my transplant preemptively.

How do high treatment costs and misinformation impact your health behaviours and adherence to CKD treatment strategies?
As I am UK-based, my treatment costs were covered. Having seen how many people are involved in the transplantation process, I can only imagine how much it would have cost if that was not the case. 

If you are involved in advocacy or patient organisations related to kidney disease, could you describe how this involvement has impacted your kidney health journey and whether it has helped you make more informed decisions about your health?
I recently became a Community Ambassador for Kidney Research UK, however as my condition deteriorated quickly pre-transplant I was unable to do much with it. It is definitely something that I intend to get involved in more once I have fully recovered from the operation. The information that the charity put out has been extremely useful over the years, and it will be a privilege to represent them and the great work they are doing.

Based on your experience, what recommendations would you make to policymakers, government officials, and health services regarding support for kidney patients in accessing needed kidney care and treatment?
As someone relatively young when I was diagnosed, I would definitely say that more awareness needs to be brought to kidney disease. Back then I thought that kidney disease was something you were either born with or suffered from much later in life, usually due to poor lifestyle decisions. I never realized that someone so young, fit, and healthy could be so seriously affected by the disease. Policymakers should support charities like Kidney Research to promote their message. Especially as kidney disease continues to rise!

Disclaimer: The blog series is intended for informational purposes only and is not meant to endorse or promote any specific drug, product, or brand. Each individual’s experience is unique and should not be construed as medical advice or a guarantee of similar results for others. Always consult a qualified healthcare professional before making any decisions regarding your health and well-being.