The Truth About Dialysis: What No One Tells You

As a person living with kidney failure and relying on dialysis to survive, and also as the director of the African Caribbean Kidney Education™ CIC, my mission is to educate and raise awareness about kidney disease and kidney failure, particularly within the Black community, where the risk is disproportionately high.

Did you know that Black people are five times more likely to develop kidney disease than other groups? Despite this, kidney disease is rarely discussed in our communities, and by the time many people are diagnosed, it is already too late to prevent long-term damage. I want to change that.

I am sharing my personal experience of dialysis, not to complain, but to reveal the truth about what it really means to rely on a machine to stay alive. If this blog inspires even one person to take their kidney health seriously, it will have been worth it.

The Harsh Reality of Dialysis

When people hear the word "dialysis," they often assume it is just a regular medical treatment - something you undergo and then carry on with your day. The reality could not be further from the truth. Dialysis dominates every part of your life, from your energy levels to your career, your ability to travel, and your mental well-being.

Extreme Fatigue: The process of having your blood removed, cleaned, and returned to your body leaves you completely drained. Some describe it as feeling like you have run a marathon - except there is no sense of achievement, just relentless exhaustion.
Strict Dietary Restrictions: Everyday foods like bananas, tomatoes, dairy, and even too much water can be dangerous. Managing potassium, phosphorus, and sodium levels becomes a full-time job, and even small mistakes can have serious consequences.
Muscle Cramps and Bone Pain: Painful muscle cramps can occur during treatment or randomly, such as in the middle of the night or while driving. Kidney disease also weakens the bones over time, making them brittle and prone to fractures.
Emotional and Mental Struggles: The constant hospital visits (typically three times a week for four hours per session), lack of control over your schedule, and uncertainty about the future can lead to depression and anxiety. Many dialysis patients feel isolated, especially when friends and family do not fully understand their experience.
Hair Loss and Skin Problems: Many patients experience hair thinning or patchy hair loss due to the medication administered during dialysis, stress, or nutritional deficiencies. Skin can also become dry, itchy, and discoloured, affecting self-esteem.

The Hidden Struggle: Dialysis and the Menstrual Cycle

One aspect of dialysis that is rarely discussed is menstruation. This issue is often overlooked because the majority of dialysis patients are older or have experienced menstrual irregularities due to advanced kidney disease. However, for younger women like myself, dealing with menstruation while attached to a machine for several hours is both physically and emotionally challenging.

The fluid removal process can exacerbate cramping and muscle spasms, especially in the abdominal area. Additionally, the natural loss of blood during menstruation can lead to low blood pressure, which is already a common issue for dialysis patients, causing dizziness, fatigue, and even fainting.

There is very little support or guidance available for women who are still menstruating while on dialysis. This lack of research and awareness leaves women like me feeling isolated and unheard, adding to the emotional toll of dialysis.

Risk of Infections and Complications

I began my dialysis journey in 2022 with peritoneal dialysis, which uses the lining of the abdomen to filter blood. However, in March 2023, I developed pneumonia due to excess fluid in my body. An initial attempt to drain the fluid failed, leading to a life-saving operation on Easter Monday.

Following my recovery, I switched to Haemodialysis in June 2023. This more common form of dialysis filters the blood externally through a machine but comes with its own risks, including infections, blood pressure fluctuations, and clotting.

Dialysis and the Challenges of Work

When I was first diagnosed with kidney disease in 2019 and experienced kidney failure in 2022, I never imagined it would impact my career. I had to change my role at work to fit around my treatment schedule. Even with this adjustment, I often work late into the evening to make up for the time lost during dialysis.

I've also worked as a DJ for the past 26 years, travelling around the UK and internationally is essential to my work. However, living on dialysis makes this incredibly difficult. Whether you are a DJ, delivery driver, graphic designer, or shop assistant, dialysis will affect your ability to work. On average, treatment takes 16 hours per week, not including travel time, which can be significantly longer if you rely on hospital transport.

The Struggles of Travelling on Dialysis

Travel is another challenge if you are going. to be away from your regular dialysis days, for example for a holiday. Before going on holiday, you must find a dialysis unit at your destination, which is not guaranteed and often requires extensive paperwork and tests.

I have used the Freedom, the dialysis holiday specialists, to book into a unit in Dubai, the service was excellent, but it was an additional cost on an already expensive trip. If you are travelling outside the UK, you will also have to pay for dialysis - often upwards of £350 per session. A two-week holiday could cost thousands of pounds. Additionally, some units will not accept unvaccinated patients, limiting travel options further.

Other Challenges I've faced

Hospital Transport: Unreliable and frustrating. After treatment, you may wait up to 90 minutes for collection, and depending on how many other patients are in the vehicle, the journey home could take up to two hours.
Racism and Racial Bias: I have experienced racism from other patients and racial bias from medical staff, leading to making formal complaints. This process is time-consuming and stressful at the best of times, but especially when you are balancing life on dialysis.

How Can You Avoid Ending Up in This Situation?

I share my experience to highlight the severity of what can happen if you neglect your kidney health. Here’s how to protect yourself:

Stay Hydrated - Water helps your kidneys filter waste properly.
Eat a Healthy Diet - Reduce salt, avoid processed foods, and eat fresh, whole foods.
Monitor Your Blood Pressure and Blood Sugar - High blood pressure and diabetes are leading causes of kidney failure.
Limit Painkiller Use - Excessive use of ibuprofen and similar medications can damage your kidneys.
Get Regular Check-Ups - Kidney disease has no early symptoms, so routine tests are essential.

This is just a snapshot, there are lots more things that you can do, visit our website and social media for more

Final Thoughts

Dialysis is not just a treatment; it is a lifelong commitment that affects every part of your existence. Whilst I am grateful for the treatment that keeps me alive, I want to be honest about the struggles that come with it.

Black people are five times more likely to develop kidney disease than other groups, which could lead to kidney failure. We cannot afford to ignore our kidney health. Regular check-ups are your MOT for your body - take them seriously.

How can you help?

Share this blog and the work of the African Caribbean Kidney Education Enterprise™ (ACKEE) to help inform and educate others. Also find us on social media @wearetheackee on all platforms

Do you have ideas on how we can promote deceased kidney donation within the Black African Caribbean community? We welcome collaboration and partnership suggestions. Reach out to us via our contact page if you believe we can work together.