Its My Kidneyversary
I’ve marked another year with my kidney, all thanks to my incredible donor. Each year, I feel immensely fortunate and deeply thankful. My results have remained consistently good, which pleases me greatly. The routine established many years ago remains unchanged 29 years on. In fact, my bloods have improved since I’ve stopped overexerting myself. I’ve always listened to my body, although I regret some of the hard manual jobs I have taken on over the years. It’s evident that this, along with years of strong medication, it has taken a toll on my body.
Routine
As I look back over 30 years, to the year I was diagnosed in 1994. I know what that year did to me and my first call on the 13th November changed everything. So, those that are waiting for the call, it can all change so quickly. When it does, grab hold of that wonderful opportunity we have been given. That is exactly what I did, learning whatever I could and asking many questions. The routine I put in place and how I have done things, I know I got that right. Although if you saw my medication draw, you would not exactly call it organised. No plastic compartments with the day on. Just a draw in the kitchen, where I take medication as part of that routine.
Sense of Humour
My sense of humour, is something that has seen me through some of the darkest times in my life. In fact joining TikTok back in April 2020, was very much part of finding myself again, after a breakdown. I lost who I was, as mental health was taking it’s toll on me. Watching performers on there and people showing their talent, its just lovely to see. I have fond memories of doing my impressions, when I had to make some changes in my life. The photo below is actually one of the first times back on stage post transplant. This was in front of a large audience of around 3000 people and I was shaking, holding the microphone. It was not so much nerves, more the side effects of the Cyclosporin 😁
The New Normal
Adapting to what I refer to as the ‘new normal’ post-transplant was important for me. I realised life would never be exactly as it was, and that was ok. Adjusting to the new side effects was challenging. From the onset of my transplant journey, I was committed to acknowledging my true feelings and being honest about my experiences. This came from my time on dialysis, though I’ll spare the details with Christmas coming up. The initial call, received three weeks earlier, marked a significant shift for me. Following my transplant, it took me around 18 months to get used to my ‘new normal’. Being honest regarding my post-transplant experiences has been instrumental in my growth as a resilient, independent patient. Acceptance was an important part of my journey. Kidney failure changed my life, but I was not going to let it define me.
I felt right from the beginning, that being honest about the diagnosis, was vital for me to move forward. You feel a bit left out from society, no longer being the person you once was. I felt there was pressure placed on patients, terms like ‘warrier’ and ‘fighter’ are used. I was now living with a disease there is no cure for, I had to solve the puzzle. Although, looking back I wish we had talked about mental health, as it has been tough. But I have to acknowledge, that ‘get on with it’ approach that is possibly true for many of my generation, has helped me. I worry about the pressure placed on patients now, as we all know it can be very tough. Patients in my view, should be encouraged to solve the puzzle themselves. When you do, the looking after yourself, the exercise, the independence, hopefully will naturally follow for you.
My Donor
Right from the early days, I knew the opportunity I had been given. The first call for a kidney was a very big moment in my life, because of how I felt back then. When the call came on the 4th December and it was confirmed, I knew I had been given an opportunity to turn my life around. I armed myself with as much information as I could as a patient, so I could help myself. Making the kidney work, making sure I drank plenty of fluids every day. Routine baked into my life and reacting to any changes in bloods. Each year on December 5th, I always toast my donor to say thank you. Been doing the same toast now for 29 years, to say thank you to my wonderful donor. What they did for me, as well as the team at the Royal London Hospital, is something I am so incredibly grateful for.
Keep well and thanks for reading – Stuart.