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Breaking Denial: The Race For A Transplant To Overcome Polycystic Kidney Disease – World Kidney Day 2024 –

Stephen Adams, 45, from Scotland, discovered he had Polycystic Kidney Disease (PKD) seven years ago, following a routine examination. Despite leading a seemingly normal life, the progression of PKD led to a sudden need for a kidney transplant, prompting a whirlwind of medical procedures and emotional challenges. Through the generosity of a friend’s donation, Stephen underwent a successful transplant in November 2023, marking the beginning of a new life chapter.

I am Stephen Adams, 45, from Glasgow, Scotland. Seven years ago, during a routine examination after moving house and changing GPs, I received the unexpected news: I had Polycystic Kidney Disease (PKD). The discovery came as a shock, particularly considering my mother’s untimely death at 47 from calciphylaxis, a rare and severe condition characterized by calcium buildup in blood vessels.

PKD, an inherited disorder, causes clusters of cysts to develop within the kidneys, gradually enlarging them and impairing their function over time. Unlike the swift progression of Calciphylaxis, PKD tends to manifest as a slower deterioration, allowing individuals to lead relatively normal lives for years.

Initially, I attended Renal Clinics every six months, where my health was monitored closely. Over the years, these appointments became more frequent, eventually leading to monthly visits. The nephrologists were clear: a transplant was the ultimate goal as there is no cure for kidney failure. Despite this, I maintained a semblance of normalcy in my life, engaging in family activities, work, holidays, and sports.

Fast forward to October 2022, I received an unexpected call from the Renal Department of one of the hospitals in Glasgow, summoning me to meet a surgeon urgently. During that meeting, the surgeon discussed PKD and what it means – which I already knew by then – and he said: “You need a transplant”, to which I replied: “Yes, I know”. The consultant then followed up with “You need a transplant now. Do you have a donor?”. 

What followed was a stark revelation: despite my outwardly normal life, my condition had worsened significantly. I had been in denial all these years.  Further examinations revealed the need for a nephrectomy to make space for the new kidney. 

Surgery preparations included discussions about potential dialysis, a prospect that became a reality post-operation. The first operation for the insertion of a fistula for blood access in my left arm did not work, so they tried again in my right arm and this time round they were successful.

On May 31, 2023, I had a nephrectomy through a huge insertion across my stomach and delivered an 8lb Kidney! In the following couple of days, I took a turn for the worse and ended up having to get dialysis. They had tried to use my right arm fistula, but the vein had burst due to it being so deep and ended up with an emergency neckline and then a chest line.

Amidst the chaos, I had two people offering to donate a kidney, both of whom were compatible: my wife and a friend of +20 years. At first, my wife seemed to be a better match, but she failed one of the kidney tests four or five months into the process. Therefore, my friend was approached instead, and after rigorous testing, he emerged as a viable candidate. 

I was discharged from the hospital in July but required dialysis three times per week. This was not an issue because I knew it was only short-term until the surgery, which I was told was going to take place in August. However, as August approached, communication between the coordinators and myself had become poor and non-informative with things like “Do not call us, we will call you”, which I found very frustrating. In the meantime, I was trying to have a full-time job, and this took a toll on my mental health.

Dialysis was torture and boring, but necessary, and I found myself “crashing” on the machine often which is your body’s way of shutting down.

My recommendations to policymakers, government officials, and health services would be to make dialysis a better experience by having the option to do education courses, have musicians or some form of entertainment, have the nurses engage with patients, and have different things dialysis patients can look forward to in the sessions. 

Finally, at the beginning of November 2023, the long-awaited transplant date arrived: November 30. Since then, I have been on the road to recovery, with minor setbacks but a resilient new kidney. Both my donor and I have returned to work, and I will be eternally grateful for the second chance at life.

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.