I found myself in mental health crisis struggling with multiple-health conditions related to kidney disease
A 59-year-old man from Chichester found himself in mental health crisis when his kidney disease left him needing dialysis and a triple heart bypass.
Phil West has managed multiple health problems over the past thirty years related to his kidney disease, from cardiovascular issues and skin cancers to renal bone disease and sepsis. Perhaps most significant, has been the impact of his conditions on his mental health, which has led him to make two attempts on his life.
Phil, who was an HGV driver and transport manager, says: “I can often feel worthless and useless because of the way in which my health prevents me from working and doing all the things I’d like to. At times I’ve felt I couldn’t carry on. My health puts a huge strain on my whole family. It is not only me who has been affected.”
Phil’s wife and registered carer, Caroline, says: “Mental health has really affected us, and I don’t think it’s recognised enough with physical conditions. I’d never thought of myself as a carer until the Covid-19 pandemic. You just look after the ones you love. However, it can be hard, and a lot of people find themselves in this situation.”
Phil’s kidney disease
In his late-twenties, Phil began to struggle with his health, regularly experiencing sickness. However, it took 18 months for doctors to uncover the true cause.
Phil says: “They thought migraines were to blame initially. I was prescribed anti-sickness medication and tried to carry on with life as best I could. However, my poor health seriously affected my work.
“My employer referred me to a new doctor to identify the problem. Only then was a urine test carried out. This identified blood and led to my diagnosis with a type of kidney disease called IgA nephropathy. Within days, I was receiving dialysis because my kidneys had failed.”
At 28-years-old, Phil was dialysing in hospital, three times a week, for four hours at a time. He says: “I was one of the youngest patients on the unit. It was horrible. I had young children and I was no longer able to do my job. The dietary and fluid restrictions were awful.”
After nine months of dialysis, Phil received a transplant via the waiting list. This kidney functioned for 11 years until failing in 2008. After three more years on dialysis, Phil received a second kidney transplant which lasted for four years, before he spent another six years on dialysis. He is currently living with his third transplanted kidney, which he received five years ago.
Phil says: “I’m very thankful for the time I’ve had off dialysis because of my donors and their families. I was relatively well for those first 11 years, then my second transplant enabled me to have a daughter with Caroline. It’s always in the back of my mind that my third transplanted kidney could also fail, but I try not to dwell on it.”
Caroline says: “Phil often says he might not be here to see our daughter get married or go to university. But I hope he’ll be proven wrong. He has come this far despite all of the setbacks. He’s had three transplants and we’re lucky to have him here. Phil lost his parents when he was younger than our daughter. She still has both her mum and dad. We’re a family engaging in life together. That’s a real positive.”
Managing multiple health conditions
Kidney disease rarely occurs in isolation, and Phil has been affected by several related health problems.
Caroline says: “Everyone focuses on Phil’s kidney health, and it can overshadow everything else. He regularly needs treatment to freeze and cut out skin cancers. He has also had spinal surgery to fuse vertebrae because of his renal bone disease. That continues to cause him a lot of pain.
“One of the most traumatic parts of Phil’s health problems was in 2016 when he needed a triple heart bypass, less than a year after going back on dialysis. It all happened so quickly. Phil was having periods of breathlessness and was referred to a cardiovascular specialist. Around two weeks later, he was having major surgery.”
Phil says: “Doctors told us that my arteries had become blocked due to being on dialysis for so many years. Without surgery, I would have had a heart attack. Going through that major operation had a big impact on me. I found everything a lot harder afterwards. I couldn’t concentrate and my energy levels were extremely low. Throughout this time, I was still having dialysis.
“I’d always gone back to work after time off for treatments and transplants. However, I had to give up work in 2017 because of how much I was physically and mentally affected. I’m only 59 and know I still have a lot to offer, but my body just doesn’t let me do the things I want to. It’s extremely frustrating.”
Mental health and kidney disease
Two thirds of kidney patients experience symptoms of depression and one in four have considered self-harm or suicide. Phil is one patient who has found themselves in this situation due to the impact of his physical health struggles.
Caroline, who works for her local council, says: “Kidney disease isn’t a visible illness and people don’t seem to understand that it cannot be cured. I support our family financially, but we have to go through PIP (Personal Independence Payment) assessments to access additional help. That can be a nightmare for patients. It’s incredibly stressful going through interviews, appeals and tribunals to justify that you’re unwell, especially when they are chronic conditions Phil will never recover from.”
Phil says: “I don’t want to be thought of as ill or have sympathy from people. I just want some understanding. It’s a hard balance. I’ve needed counselling but so much of my care has been about treating the physical problems, that the mental impact is often overlooked. I am very thankful for the support I’ve received from my former employer of 37 years.”
Looking forward
Phil and Caroline hope that by sharing their experiences and supporting research, they can help create a better future for patients – with more holistic care across multiple conditions.
Phil says: “I try to be pragmatic about my health and want to keep supporting improvements in healthcare. I know it may not make a significant difference to my life. But it could transform the future for others. Despite the challenges, I’m extremely thankful for the NHS. Without the amazing staff, I wouldn’t be here today.”
Mental health support
Find out more about looking after your mental health while living with kidney disease: Mental wellbeing and kidney disease - Kidney Research UK
Kidney Community
A dedicated online forum for kidney patients and carers, helping people connect with others who might be going through similar experiences.
Co-developed with patients and carers, Kidney Community is a welcoming, safe space where you can share experiences, ask questions and find information and support.