One in ten people worldwide suffers from kidney disease. With March being the month during which we’re all asked to focus on this illness here’s one person’s experience of living with this illness.
My journey with Kidney Disease began in 2018, I had successfully lost just over 3 stones and was exercising regularly and had started 2018 with many plans for my development and future; but over the course of the months, I began to feel progressively ill. It felt like flu like symptoms; I felt hot, sweaty, and run down, and even though I progressively felt worse and stopped training at the gym and had started to regain weight, I continued to explain it all away.
I told myself, “I’ve overcome a series of highly stressful situations so of course I would be tired. I have annual leave coming up soon. I’ll rest then” but then I started having very intense headaches and this was what finally forced me to go to A&E to get myself checked out.
The Doctor ordered a series of blood tests and when the results came back she explained that I needed to be admitted immediately. This came as a shock because I expected that I would be told that I had nothing to worry about and send me on my way.
The 2nd night of my stay in the Hospital I began fevering, these fevers continued all night every night for 7½ weeks.
One week into my stay in the Hospital, the Doctors told me that my kidneys were failing and they didn’t know why. This came as a huge shock because I’d never had kidney problems before. I had been drinking plenty of water. I don’t drink alcohol, I don’t smoke, I was taking care of myself, so it made no sense.
My weight dropped by 12kg and my kidney function plummeted. The Doctors said that I was spiralling close to needing dialysis and my immediate response was “no!” I was not going to accept that this was my fate. I continually declared, “I don’t want to end up on dialysis or need a transplant, I want my kidneys to recover and be healed”.
My light in the darkness were my many visitors: family, friends, work colleagues and managers who brought cards, gifts and sent messages; all pouring love, hope and prayers into my suffering and lifting my severely broken and exhausted spirit. The irony was through this kidney failure experience I have felt more loved than at any time in my life before.
Then, finally, after weeks and weeks of testing, the Doctors said that an infection had caused my kidneys to fail, but they didn’t know what caused the infection. I was a rare case. The Doctors started me on steroid medication and after one dose my fevers reduced and after the second dose, they stopped completely. A week later, my kidney function improved slightly and I was discharged from the hospital, officially a Kidney Warrior and not knowing what was going to happen to me.
Two months after being discharged from the hospital, my Kidney function dropped again, the Doctors tried an aggressive treatment to see whether this would help my kidney function. The risk of the treatment was that the treatment could have killed me, it was literally what didn’t kill me would make me stronger. However, the treatment failed and I was now confronted with the reality that my Kidney Disease wasn’t temporary, it was for life.
As part of coming to terms with my diagnosis of Chronic Kidney Disease I decided to start a Vlog which I named “Diary of a Kidney Warrior” where I shared what was happening in my journey and shared what I was learning. The Vlog was very cathartic for me as I felt that if someone could be helped through me sharing my journey then all of the trauma I had been through wouldn’t be for nothing.
In May 2019 my Consultant told me that he believed that I was 6 months away from Dialysis, my immediate response was “No I’m not! I’m not going to be on dialysis in 6 months’ time!” “I’m going to prove you wrong, God’s going to prove you wrong! I’m not going to be on dialysis”
I left my appointment and experienced all sorts of emotions: anger, fear, dread and then despair. I went to see my health coach and she said something that transformed my thinking, “You have to choose to live.” I sat there and repeated the words, “I choose to live,” over and over again until my spirit was recharged and the defiance came back. I would fight to get myself as healthy as I could be. The reality for me was that I couldn’t afford to do nothing. I had to do everything in my power to combat dialysis and fight for my own life. It was literally ‘do or die’.
I started slowly by exercising once a week and started sharing my weight loss journey online and encouraging others to train too. I started to eat healthier foods and began to think that everything I ate could either take me towards, or away from my goals. It was worth all of the sacrifice.
In August 2020 I started a Podcast called Diary of a Kidney Warrior. Every aspect of chronic kidney disease (CKD) is open for exploration in the podcast and I have covered subjects such as mental health, sleep hygiene, understanding renal blood test results, deceased and living organ donation, and advice for newly diagnosed kidney warriors. I hope that kidney warriors (people living with Kidney Disease) will feel educated, empowered and inspired to thrive within their own Kidney Warrior journey.
I am pleased to say that now in 2022 I am not on Dialysis and my Kidney function is higher than when my Consultant made his prediction. I sincerely believe that I have managed to achieve this first and foremost by the grace of The Almighty, by making the choice to live; by having a mindset that is focused on life, not living in fear of death. By making healthy lifestyle choices and by “paying it forward” in the form of Kidney health advocacy: raising awareness of Kidney Disease via Diary of a Kidney Disease Podcast & Vlog, social media and presentations.
Kidney disease is not just a death sentence, you can live a full life whilst living with this disease and I am living proof of that.
Follow Dee Moore:
Diary of a Kidney Warrior Podcast is available on all Podcast platforms: