Living on dialysis
It began with a feeling of queasiness. I knew something was wrong, although not quite wrong enough to feel serious. In a few days, the queasiness became nausea. In a week, it became the most overpowering nausea I had ever experienced. In a few weeks, I was taken to hospital and told that my kidneys had failed completely.
Around 63,000 people in the UK undergo treatment for kidney failure. Around 30,000 people, including me, are kept alive by a machine filtering our blood. Dialysis is a lifesaver, but also physically and mentally gruelling. It is not a permanent solution to kidney failure, as it places too much pressure on the heart over time.
My life drastically changed earlier this year, just as the world was beginning to ground to a halt. I was a (relatively) healthy 27 year old with no real medical history to speak of. Feeling increasingly ill, I was first told by my GP to self-isolate as I may have COVID-19, until eventually on Easter weekend an ambulance took me to hospital where I was diagnosed with acute kidney failure.
I was quickly started on dialysis and transfused with blood. After a whirlwind of tests, I was diagnosed with an auto-immune condition called Goodpasture’s syndrome which had attacked my kidneys. I stayed in hospital for two weeks, and due to the pandemic, neither my partner, my family, nor my friends could visit me. The doctors and nurses showed me tremendous kindness and generosity even as the hospital was clearly stretched.
I held the delusion then that I was dealing with the news with relative stoicism, but in truth I was still in the shock phase of grief. The dialysis rescued me from the depth of my sickness, but I couldn’t process how much my life would change. I thought then that this was simply an event — that I would feel better once I had left hospital — not a lifelong and life changing condition.
Since leaving hospital in April I go for in-centre haemodialysis three times a week, every Monday, Wednesday, and Friday evening, for four hours a time. Tubes from a machine are hooked up to a dialysis line in my chest, and my blood is pumped in and out of a filter separating out toxins. This reproduces a fraction of the function of human kidneys, but enough to keep me alive. The rest of the time I am being slowly poisoned by everything I eat and drink building up in my blood.
The process of dialysis itself is not painful, but it is exhausting. This is, however, not an exhaustion that goes away after a good night’s sleep. It is a constant and unrelenting exhaustion. After an evening of dialysis, even if I can sleep well, I will not wake up until the early afternoon and feel awful the rest of the day. The next day is better, but I still feel tired and in the evening I repeat the cycle all over again. Not all dialysis patients are affected this badly, but due to an active metabolism, the dialysis can’t filter out the toxins from my body fast enough. The exhaustion is often worsened by restless legs and arms keeping me up at night, a common symptom of kidney failure.
My lifestyle has had to change in other ways too. As my body can’t produce much urine, I can only drink very small amounts of water. All fluid I consume has to be taken out of my body during dialysis, and the more fluid taken out, the worse I usually feel after dialysis. I have to follow a ‘renal diet’, which means low levels of potassium, phosphate, and salt. These are present in a wide range of food, for example, no tomatoes, potatoes, spinach, cheese, or chocolate. I can’t drink alcohol or coffee, which for a coffee addict has been hard! I take seven medicines a day alongside weekly injections of iron and EPO for red blood cell production.
I hope that I can receive a kidney transplant so that my life can return to something resembling ‘normal’. I began tests in September ahead of being placed on the transplant list for a deceased kidney, but unfortunately an echocardiogram discovered that my heart is enlarged and severely dilated, what is known as cardiomyopathy. This was difficult news to take in especially after my bad luck earlier in the year. The good news is that I am taking medication that may repair my heart over time. I am also fortunate that the Goodpasture antibodies that destroyed my kidneys are also now negative, reducing the risk that my body will attack a transplanted kidney.
2020 has been an awful year for most, and I cannot disagree, except to say that in one sense this year has been the best year of my life. After ten months of pandemic enforced separation I was finally reunited with my partner Atasi in London in October. Spending such a long time apart, especially with my illness, was a nightmare for both of us, but now we both have cause to look forward to 2021.
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In the run-up to Christmas, Atasi and my friend Gabriella are walking 12,000 steps each to raise money for Kidney Research UK. They have already raised an incredible £600. The charity works towards better prevention and treatment of kidney disease and kidney failure. In short, they give people the gift of life. I would be very grateful if you could donate here.
Happy Christmas!
Best wishes,
Alex
