I started in centre dialysis in December 2016 and realised very quickly, my need for routine in order to maintain a degree of control, provide headspace and stability. The timings of the session, the iPad to pass the time, reading books, and, of great importance, the tea and biscuits to break up the passage of time into manageable chunks.
I am now quite settled, and time does pass well, I don’t need to clock watch and so even find I can nap. I trust the team of nurses and consultants implicitly so the only time I am a little nervous is when the needles are removed, and I pray for the gauze to do its job – that the bleeding will quickly and uneventfully stop!
Non-dialysis days have a greater importance now, I don’t have huge amounts of energy but try to get out and have some fresh air, usually at the seaside where I can reset my mind and soul. I therefore don’t feel sorry for myself for having renal failure and got on with living, planning to conduct a PhD around renal End of Life to keep my grey cells functioning.
Looking at a WHO Timeline [1] it was on 31 December 2019 that China reported a cluster of cases of pneumonia in Wuhan, Hubei Province. I cannot even recall seeing it. A day later WHO set up an Incident Management Support Team which put WHO on an emergency footing. By 22 January WHO issued a statement that there was evidence of human to human transmission. Jumping then to 11 March, WHO declared that COVID-19 be characterised as a pandemic. In those early moments in China no one could have forecast that in just 14 weeks the UK would be in lockdown, life changing beyond recognition.
Throughout these catastrophic times dialysis carries on, and being in social isolation they have become times when I get out of my home and have some ‘company’.
One significant consequence of COVID-19 for me is the suspension of kidney transplants, quite understandable. What scared me the most though was being categorised as extremely vulnerable. I once drove to my local Supermarket, saw the long queues, looked at my mask, and realised how much risk I would be putting myself in joining this band of shoppers, so turned around and went home. Does it frighten me, YES, it has knocked my confidence and even writing about it makes my stomach churn. I worry about my nurses becoming sick, the supplies not arriving, having to go to a different centre, cutting down sessions and trying to manage fluids. Will my EMLA cream run out, what if I catch COVID-19, would I, as extremely vulnerable, get a respirator? I wouldn’t be able to see those that I love in person.
This is the deluge of thought that has crashed into my headspace causing untold damage- and I am one of the lucky ones, so I then feel guilty about having selfish thoughts.
From a short news item at the start of 2020, to a world crisis, and uncertainty for an uncertain length of time.
As a dialysis patient I had come to terms with the consequence of stopping dialysis – death in a short space of time – but COVID-19 is so slippery that the fear of the unknown becomes overwhelming. Thus the title from invincible (dialysis works and keeps me ALIVE) to vulnerable (I don’t know what is going to happen).
Facemask and hand sanitiser at ready, a faith, and an amazing team of dedicated staff who ceaselessly strive to keep me safe and alive through extraordinary sacrifice.
Keep safe and see you on the other side
Over to the medics…please tell your story
renaleolresearcher@btinternet.com