What is CKD?

According to the NHS ‘chronic kidney disease (CKD) is a long-term condition where the kidneys don't work as well as they should’ and the National Institute of Diabetics and Digestive and Kidney Diseases states that ‘chronic kidney disease (CKD) means your kidneys are damaged and can’t filter blood the way they should. The disease is called “chronic” because the damage to your kidneys happens slowly over a long period of time.’ In simple terms, it is damage that happens to the kidneys causing them to not be able to function properly for a long period of time.

The medical definition of a chronic condition is one that lasts 3 months or more. Due to the kidneys being damaged in CKD, it is lifelong because it can be irreversible. There are 5 stages of CKD, and each stage possesses different symptoms. In stage 1, there is mild damage to the kidneys and the kidneys can adapt to this. If the damage is detected during this stage, it is likely due to routine blood and urine tests for diabetes or high blood pressure. In stage 2, the function starts to decrease further. Stage 3 occurs when kidney function is below 60%. Symptoms can start at this stage and include fatigue, swelling of the hands and feet and urinating more or less than normal. Stage 4 then occurs when function is below 30%. There are increased symptoms, and it can cause complications such as high blood pressure, anaemia, and possibly increased risk of a heart attack. Less than 15% function is stage 5. Without dialysis, the life expectancy of a patient can be from days to weeks to months dependent on the percentage of their kidney function, if they do not go on dialysis. This can increase to 5 to 10 years on average if dialysis goes ahead. Dialysis is not a cure for kidney disease, but it is a process to remove waste and fluid from the body.

Some different types of kidney disease that cause kidneys to fail include:

· Nephronophthisis (what I was diagnosed with)

· IgA nephropathy

· Medullary cystic disease

· Nephrotic syndrome

· Autosomal dominant polycystic kidney disease

· Autosomal recessive polycystic kidney disease

· Glomerulonephritis

I didn’t want this to be a load of facts and figures for you so since we have covered the scientific part, I wanted to include what CKD was to some patients and provide an insight into how it affects people. I’ve kept them anonymous for their privacy.

“I am very passionate about mental health and kidney disease. The experiences you go through can be traumatic and will stay with you throughout your life. I remember being told very recently that a transplant is a treatment not a cure. I feel there is a common misconception from the wider public that when you have your transplant everything is fine. Your life is likely to improve dramatically but there are still mental health scars that need to heal as well as medical scars.”

“I only got diagnosed with CKD just over a year ago, but since then I have learnt to appreciate life more and try not to be so hard on myself. It’s a tough disease but you learn to be tougher than it and fight on to see another day.”

“I want to write something positive, but I can't think of anything I'm afraid. I was diagnosed 5 years ago, told I would need a transplant 4 years ago, and I've been on dialysis for 3. It makes me feel like I've been robbed of what should have been the best years of my life. All CKD means to me is that it's a massive inconvenience, especially the whole dialysis thing.”

“I was born with it so in essence it’s my normal but growing up it’s affected me with bullying, name calling due to side effects for one. Which I guess is also the start of mental health baggage.”

“For me, kidney disease has helped shape the person I am today. The people I have met throughout my life in the hospital and through the transplant games are some of the most inspiring people you’re likely to meet.”

“Living with kidney disease post-transplant is like living a normal life with the constant reminder that it could be taken away from you without much warning. For me that is the truth, and it is a daily thought, always on my mind and reminds me to enjoy life and my days whether I’m doing something special or just a normal day working etc.”

The one thing that stands out to me from all of these quotes is the mental impact that the physical illness has. CKD may be a kidney disease but dealing with the symptoms, treatments, medication, and side effects also can cause a mental strain and that is something we should all try to remember about any condition. With CKD, you have to go through all of this through no fault of your own, like any other disease, and it can be isolating at times and make you feel different, I know it has for me personally.

If you would like to read more about CKD you can head to any of the useful links, send me a DM with any questions or use the contact form. If I don’t have the answer, I will try my best to find it for you. Especially as I have only been through one type of kidney disease and there are so many!