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Kidney disease ends here.

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From denial and blame to anger and acceptance, Emmanuel writes a book on his journey with kidney disease

20 August 2020

Emmanuel Gonzalez-Escobar is still unsure how he became ill with kidney disease. 

The confusion led to a painful world of anger, frustration and blame by the 28-year-old research scientist, who has written a book on his journey from denial to acceptance. 

Originally intended to privately vent his feelings, the research scientist found the writing process so cathartic, he decided to self-publish his book in case his words helped others come to terms with their illness. 

“For anyone struggling emotionally with finding acceptance, I cannot  recommend enough the power of writing it down, be it in an email, a letter to yourself, a few notes, a diary or just writing on scraps of paper then tearing it up,” Emmanuel said. 

Emmanuel Gonzalez-Escobar in hospital gown.
Emmanuel Gonzalez-Escobar in hospital gown.

Finding healing through writing

Currently in stage five of kidney disease and on the transplant waiting list, he added: “When I go through stressful situations, I tend to forget a lot and block it out. I thought it was a good idea to collect my thoughts to help put a clear picture in my mind. 

“Writing helped me focus on the whole journey. If reading it helps one other person then that is great, but primarily I did it for me as a healing thing. It has helped me move on.” Life De(fined): Living in the Shadow of a Silent Killer is being self-published via Amazon in paperback and e-edition. Due for release in October, it weaves a web of anger, denial, blame and acceptance with facts and a final chapter on where to go for support. 

Writing helped Emmanuel realise he feels exhausted a lot of the time. “I didn’t realise how much before committing that to paper!” he said. 

“For me, the impact of kidney disease on my life is subtle. Maybe that is because I am used to it. I am very tired and can lack motivation because of this. I also have digestive issues with a lack of appetite or being hungry at unusual times. Mental health has been an issue for me, as it has for many kidney patients.

“I don’t know if it is a recent decline or long-term since I was little. Nobody will ever know. At least I am now at peace knowing this is part of who I am.”

Time to process

Emmanuel felt unheard until being transferred to the Lancaster renal unit when he moved home in 2016 and said his new consultant helped massively by being friendly with a personal approach enabling him to talk freely.

“This is when I realised I had gone through a lot and needed to process it,” said Emmanuel, who went back and forth to medics since 2016, after suffering an unexplained fever, back pain and skin infection.

“Out of the blue my skin blistered with painful, sore open wounds,” he said.

He initially blamed staying in a dirty hotel room during a trip to a conference in London, then blamed a colleague for booking the venue, but in time realised that this blame was futile.

Mystery illness

“The skin infection was never diagnosed. I had a mystery illness with severe back pains, which is why I wondered if there was a kidney function decline. It felt as if my concerns were not being taken seriously,” he said. 

I then wondered if I had suffered kidney damage in childhood from an infection, similar to a UTI. However, I was given the all-clear from a comprehensive health check in 2010, before moving from Germany to the UK for university. 

I was left wondering, was my kidney function failing from a child or was it this strange undiagnosed skin infection that caused it? The truth is, none of it matters, because the biggest thing is accepting my kidneys are failing and I will need a transplant at some point. 

Not currently on dialysis, his function is at around 16 per cent. 

Transplant wait

“I am waiting for a transplant, but for me family and friends are not an option as I am not comfortable with it,” Emmanuel said. 

Most of my friends are young and haven’t started families yet, so I do not wish to ask them. My mum has underlying health conditions and my dad is diabetic so that is out of the picture too. 

For Emmanuel the biggest thing now is staying healthy physically and mentally while awaiting transplant. 

Writing is a very powerful tool. We all use it without noticing, for example, writing shopping lists and ticking off jobs. People underestimate its tool as a psychological process. 

“Even writing things down, then crossing it off can render it obsolete on a psychological level. It helps to see your own words. Why not give it a go?” 

Emmanuel is active on our Kidney Voices for Research Facebook group, and is happy to answer any questions or comments about his book from anyone who come across his story. Visit his website at https://pressureink.org/books/life-defined.

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