My Kennedy moment came long before this, but work really began with the word
Anastomosis
Cramps, fatigue, oppressive fluid and dietary restrictions. The fact that you have hoses, tubes and needles invading your body. The fact that you are robbed of dignity as an organism that has lost its ability to get rid of its waste, dependent on the whirl of a machine to keep you alive, an unnatural entity. These are the conditions of kidney failure. And the time will come for describing all of this and more in detail, as I have experienced them.
But now I will describe my transplant. As that was the day everything began, a second birth from the mother who had already birthed me once before.
The day before my surgery, I was bed bound with high amounts of fatigue, nausea and a cracking headache. To those that know severe altitude sickness, this is broadly what it corresponds to. At the hospital, I was connected to my dialysis machine for the night. To my delight, the nurses had already set it up. This is a peritoneal dialysis machine. The dialysis fluid is pumped in to your abdomen with a permanent catheter, an open wound in to your body, yet your life-line. It dwells for a few hours, your stomach tightens like a drum, and it is pumped out, only to be replaced by more fluid. Such is the process of dialysis, which is different from the open blood-filtration most are used to hearing about. The night was fitful, but when the morning came I emptied my abdomen fully for the surgeon.
My mother was taken in first. And so all was set, the surgery would happen. There would be no last minute mind changing, no ifs no buts, it would happen. I went into the surgery room, feeling dreadful.
I woke up from the surgery, feeling much better. Never had I experienced such a step change in my state of existence. It was as if a magic ritual was performed in the operating room and the incantation was ‘‘Anastomosis’’. The man that went in and the one that came out, were not the same. I was wheeled in to my mother’s room. The nurses held out the urine bag to her like a newborn. The fluid that was trapped within me was gushing out, the blood full of toxins being cleaned. My mother was lying there, as the woman who had given me birth for the second time.
[Donor Monument: The Climb. Netherlands, Naarden]
The Artificial Kidney
I want to create the magic I experienced in that operating room for those much less fortunate than I was. I want to alleviate the suffering of those who are on the donor waiting list or can’t even receive a donor kidney. I want to end the spectre of returning to dialysis who have donor kidneys.
This substack will detail my climb to that goal. I and my colleagues at University Medical Centre Utrecht (UMCU) want to create an implantable artificial kidney that will end dialysis.
The main function of this page will be to detail our journey. From the small technical details such as, how do I get optical transparency in my 3D prints, to the psychology of disease, to the politics of scientific funding. Throughout this, I will also detail my own personal experiences that have led me to take up this challenge.
The Appolo Mindset
I define this as the mindset that Neil Armstrong had when coming in to office after ejecting from the lunar landing research vehicle, or how Appolo 13 was saved through improvisation of a ‘‘mail-box’’ with duct tape to scrub carbon-dioxide. Basically, courage, ingenuity and a can-do attitude with an unyielding resolve to evaluate rationally and stay the course towards the goal.
[Armstrong ejecting from the LLRV moments before it crashes]
With this page, my main aim is to raise awareness about kidney failure and our own Appolo project. But I also I want to engage with other people with the same Appolo Mindset.
I have talked to too many researchers that have been completely disillusioned with their work ever making real impact in the world. I want to eventually show that this is wrong and if we can foster the above traits, we can have our own moon-shots actually land too.