Shall we start with the good or the bad news?
I have been busy, stressed, exhausted, happy, sad, worried, elated, deflated, probably like many of you!
Wow what a sentence to start on, it's all too easy to just reply with, "I'm ok, I'm cool", when people ask but when it boils down to it, I am not being totally straight with you all because in truth, I am fucking scared. I don't often use such a strong word in newsletters but the truth is, I am scared.
I went to see the doctor recently, my kidney specialist (Nephrologist) to be precise, whom I have been seeing for many years since I had my transplant in 2008. His team saved my life back then and not to forget the most important person, my very own Dad who through live organ donation, gave me one of his...
...Dr Andrews broke the news just a few weeks or so ago that the transplanted organ was on the decline and we must now start making plans to prepare for the second transplant. My world felt like a ship sailing across a calm ocean and into a sudden turbulent storm. My mind spun into a maelstrom of terror, with the thoughts of potential dialysis and my comfortable life being ripped up. Then I thought of people in a far worst situation than myself and my brain started recalibrating itself between fear and calm. I began to rationalise. I can deal with this.
Since that appointment my wife, family, friends and colleagues have all been supportive and all I can do now is hope that things will be actually alright in the end.
They will be. All will be fine. It has to be. The other option is not an option.
FSGS, Focal Segmental Glomeri Sclerosis is the disease that originally attacked my kidneys and caused ESRF End Stage renal Failure, well not quite but very nearly, we nabbed it in the nick of time. I don't think the cause this time is that, I think it's just age and time going against me.
Kidney disease doesn't get as much funding as cancer and I think this is a bit of a problem. A lot of people get ill through it. Talking of which I actually feel pretty well right now, I am leading a normal life still. So that is not a bad thing. I celebrate this every day, as I have done for the past 17 years.
Apart from the illness I face, I am good in all other respects.
I have been following developments on the Paragraph.xyz platform and it looks like some innovative stuff is taking shape here. I will perhaps write some more here soon but I've got a lot on my plate.
Let's test Soundcloud embeds with something I have been up to recently...
Nick Lewis