25 Mar 2024

Patient story: Living with Chronic Kidney Disease

The Health Innovation Accelerator is focused on rapidly improving diagnosis and treatment in disease areas where early diagnosis can improve outcomes and save people’s lives, including heart failure, liver disease, chronic kidney disease, lung cancer, and respiratory conditions.

But what does improving early diagnosis really mean for people who are living with these conditions? What does it mean for those who may be at higher risk, who could benefit from earlier diagnosis?

We hear from Fez, a patient advocate for those living with chronic kidney disease (CKD) and who has lived with CKD his whole life. He shares his experiences of living with CKD, the importance of early diagnosis and tackling health inequalities within underserved communities.

Living with Chronic Kidney Disease

Chronic kidney disease (CKD) is a long-term condition where the kidneys do not work as well as they should. Fez was born with kidney failure. He had his first kidney transplant at the age of 3, and since then, he has received two further kidney transplants.

“In essence, there was a blockage at my bladder, so the urine was emptying incorrectly. The urine would then build up and return back to my kidneys, and that inevitably damaged my kidneys to the point where I needed further interventions.

“My first transplant was when I was three years old, which I have foggy memories of. The second one was a live donation from my father in the year 2000 on Star Wars Day – so that’s kind of easier to remember! Then I had my third kidney transplant in July 2020.”

Living with CKD has not been a smooth journey. As well as the physical impact, including severe pain and fatigue, Fez notes that the toll on mental health is not to be underestimated.

“Living with CKD is difficult, especially when you have to navigate a health system and an illness that’s long-term. There will be times where you can be very fatigued. You can be in a lot of pain. You can get fed up with having blood tests so frequently. It can become very stressful, so on the mental health side of things are very important to try and look after as well.”

The importance of early diagnosis and tackling health inequalities

 

Whilst Fez was born with CKD, CKD is usually caused by other conditions that put a strain on the kidneys, including high blood pressure, diabetes, and high cholesterol. Fez highlights the importance of early diagnosis, especially in preventing the progression of kidney disease.

“In regard to early diagnosis of CKD, I feel it’s very important. CKD is closely interlinked with other conditions. It is the 8th leading cause of death in the world, so I think sometimes CKD doesn’t get as recognized as much as it should.”

CKD is also more common in people who are black or of south Asian origin. In Greater Manchester, it can also be those communities who face greater inequalities, including later diagnosis of CKD, reduced access to healthcare services, poorer outcomes and lower quality of life.

Being from the South Asian community, Fez acknowledges the importance of both earlier diagnosis and tackling health inequalities in communities that are generally more susceptible to certain conditions.

“It is really important to tackle these health inequalities. I don’t want more people to suffer. Especially for those who are at higher risk of these conditions, including CKD, diabetes and hypertension, it is very important that we try to encourage, engage, and have appropriate conversations with those people.

“The main advice I would give to people who may potentially have CKD? Get checked. Go to your GP, or if there’s a health centre nearby, or get your blood pressure checked – that might be a first sign to see if your blood pressure is an issue. It’s a blood test, which granted isn’t pleasant, but if it can help you avoid a lot of other things that will happen if you end up with CKD, I think the test is worth it.”

Supporting those living with CKD

Fez has done a huge amount within his lifetime to raise awareness of and support those living with CKD within his communities.

He is an organ donation ambassador for NHS Blood and Transplant (NHSBT), works closely with kidney charities including Kidney Research UK and the UK Kidney Association, and is also chair of the Renal Patient Led Advisory Network (RPLAN) – a group run by patients, for patients and their carers.

“Through RPLAN, we are there to help people try and navigate the health system because it can be very complicated; so whether you want advice, you need to be signposted, you’re having issues with finances because you may have lost work, or you may have had to leave university… whatever your situation in life, we are there to support and help those people.”

Fez selflessly spends a huge proportion of his time giving back to his community.

“I’ve always been a kidney patient. I’ve learned from a very young age that my life is going be different, and I want people’s journeys – whether that be in paediatrics, transition, adult care – to be as easy as possible and not have to go through the ups and downs and tribulations that I and other people have had to go through. So they can have the best quality of life they can.”

Thank you, Fez, for sharing your experiences of living with CKD, and for all the work you do within your communities to raise awareness and support others living with CKD.

 

Further information for CKD patients

  • Renal Patient Led Advisory Network (RPLAN): Advocating for & supporting Renal Patients in England. Follow them on X/Twitter, Facebook and Instagram.
  • UK Kidney Association: the leading professional body for the UK kidney community. https://ukkidney.org/
  • Kidney Research UK: the largest charity in the UK that funds research that focuses on the prevention, treatment and management of kidney disease with the aim to free lives from kidney disease. https://www.kidneyresearchuk.org/
  • Research for the Future: Research for the Future is an award-winning, NHS supported campaign that helps people find out about and take part in health and care research. https://www.researchforthefuture.org/

 

Further information about the Health Innovation Accelerator

The Health Innovation Accelerator has been established to rapidly improve the diagnosis and treatment of disease across the 2.8m Greater Manchester population.

The Accelerator encompasses two projects, the Advanced Diagnostics Accelerator and the DEVOTE programme, delivered through a partnership between Health Innovation Manchester, Manchester University NHS Foundation Trust (MFT), The University of Manchester, and industry partners.

Read more about the Health Innovation Accelerator here.

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