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  • Podcast interview with Candice McKenzie: what it really means to rely on dialysis

    Relying on dialysis is more than just a medical treatment As someone who has personally experienced the challenges of living with kidney disease, which has developed into end stage renal disease (ESRD) and now relies on dialysis to survive, I truly understand the importance of raising awareness, especially in the Black African Caribbean communities. This is why I founded the African Caribbean Kidney Education Enterprise (ACKEE). Recently, I was interviewed by Tony Fuel for his excellent House Music Connections Podcast (you may not know that I have been a DJ for 25 years!). We covered a lot of ground, including living with kidney failure, what it really means to rely on dialysis, faith, working in the music industry, and transitioning to founding ACKEE. Relying on dialysis is more than just a medical treatment; it affects every aspect of life. From the physical demands to the emotional and psychological impacts, and event how much it eats into your time, the journey is filled with both challenges and triumphs. During the interview, I shared some of these experiences and how I make it best work for me. I believe that it is so important to share your stories so others can learn from your experiences, be encouraged and inspired, and also for history and legacy purposes. Sharing stories is powerful. It creates connections, fosters understanding, and can be a source of strength for those facing similar challenges. What stories do you have to share with ACKEE? Have you or a loved one experienced living with kidney disease? We would love to hear from you! Your experiences could help someone else find hope and inspiration. Please share your thoughts and stories in the comments below. Together, we can build a supportive community and raise awareness about the realities of living with kidney disease. Watch the full interview on YouTube or listen wherever you get your podcasts. How can you help? Consider becoming a deceased kidney donor Share your decision with your family 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 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.

  • Living with Kidney Failure: How an Organ Donation Could Change My Life

    In early 2019 I was constantly tired.  I knew I was working hard as an events producer and also a DJ and radio presenter, so I began to be intentional with having early nights and also ensuring that I was eating healthily.  Despite my best intentions I didn’t notice a change, so I booked an appointment with my GP to request for a blood test.  My doctor called me whilst I was at work with my results and told me that I needed to go the the local hospital immediately for further tests. Hospital consultants carried out various tests including an ultrasound and a biopsy, and a few weeks later I was diagnosed with IgA Nephropathy, also known as Berger’s disease.  My kidney function was around 32% at that time. By 2022 I was diagnosed with kidney failure as my kidney function had declined to around 8%, so as part of my ongoing treatment I started dialysis.  I have very small veins so it was decided that I should do peritoneal dialysis rather than have a fistular for hemodialysis.  I had to administer four fluid exchanges a day, every four hours.  As a result, this made it impossible for me to continue working as an events producer in a busy central London office, and I had to change my role.   Doing peritoneal dialysis four times a day also made it very difficult for me to make plans that took me far away from home, as I would have to return home to do dialysis or carry the heavy fluid around with me to do it on the go.  My work as a DJ meant that at times I had to travel, sometimes overseas.  I tried my best to maintain this but the logistics of trying to send the dialysis fluid to the destination ahead of my arrival or to carry it myself in a very large, heavy suitcase, was very stressful. In January 2022, I was added to the NHS Organ Transplant Waiting List, and in a bid to help maintain my life, both of my parents were tested to see if they were a match, however it was confirmed that they are too old and that a younger kidney donor would be preferred. Unfortunately, in March 2023 I developed pneumonia due to complications with peritoneal dialysis and I was hospitalised.  There were complications with attaching the second chest drain to my body to drain the fluid from my lungs, and I had to have an emergency operation.  I spent 3 months in hospital and then a further two weeks in hospital in August 2023 due to infections.   Developing pneumonia and being unwell for a long period of time made me nervous about continuing with peritoneal dialysis, so I made the decision to switch to hemodialysis via a line, not a fistular as I have small veins.  I do dialysis three times a week, 3.5 hours a session. Kidney failure is an invisible illness, on face value, looking at me, perhaps you cannot tell that there is anything wrong with me.  However, kidney failure comes with many other health complications including anaemia, extreme tiredness, vitamin D deficiency, muscle cramps, shortness of breath, high blood pressure and of course needing dialysis to maintain life.  At the time of writing this blog there are currently 6210 people waiting for a kidney donation.  As I wait for the call to be offered the gift of life by having a kidney transplant, I do my best to remain positive.  Whist a kidney transplant is not a cure for kidney disease, it would significantly improve my quality of life. Currently, dialysis keeps me alive, but it also limits my freedom in many ways. The frequent treatments (3.5 hours a session, 3 times a week), which I am very grateful for, tie me to a very strict schedule and make it difficult to travel, work, and enjoy many aspects of life that others might take for granted. Receiving a transplant would remove the need for regular dialysis, freeing me from the machine and allowing me to regain more control over my day to day life. I could enjoy more flexibility, spontaneity, and the ability to make plans without constantly thinking about when I will need to do my next treatment. I would have the energy to focus more on my passions, such as my work in music and events, and to pursue new opportunities that are currently out of reach. That being said, I know that a kidney transplant is not a cure. It is another form of treatment and requires lifelong care, including taking immunosuppressive medications to prevent my body from rejecting the kidney. These medications come with their own risks and side effects, such as a higher likelihood of infections. Even so, a transplant would mean less restriction on my life and offer a level of freedom and normalcy that I have not experienced for a long time. The thought of being able to live more freely again, without the constant burden of dialysis, gives me hope as I wait for a donor. It is a reminder that organ donation has the power to transform lives, not only by extending life but by vastly improving the quality of it. By registering as an organ donor, you have the potential to save lives, offering hope to those like me waiting for a second chance. Will you consider signing up today and making the gift of life possible for someone in need? It only takes just two minutes to register your organ donation decision: https://www.organdonation.nhs.uk/register-your-decision/donate/ How can you help? Consider becoming a deceased kidney donor Share your decision with your family 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 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.

  • From Personal Journey to Public Advocacy: Initiative Launched on World Kidney Day to Educate Black Communities on Kidney Health

    On World Kidney Day, 14 March 2024, DJ & Radio Presenter Candice McKenzie is launching the African Caribbean Kidney Education Enterprise ™ (ACKEE), a community interest company dedicated to addressing the disparity in kidney health within Black African Caribbean communities. ​ Did you know that people from Black communities are five times more likely to develop Chronic Kidney Disease (CKD) than other groups? Factors such as hypertension, diabetes, genetic predisposition, dietary habits, and a lack of health discussions within the community contribute to this disparity. ​ Candice McKenzie understands this challenge firsthand. Diagnosed with IgA nephropathy in 2019, she experienced the complexities of kidney disease and its impact on life. IgA nephropathy, also known as Berger’s disease, is an autoimmune condition with varying symptoms that may go unnoticed for years. As kidney function declines, complications such as high blood pressure and the need for dialysis or a transplant arise. ​ In 2022, Candice’s kidneys failed, leading her to start dialysis to sustain her life as she waits for a kidney transplant. Her journey underscores the pressing need for awareness and action within Black communities. 2022/2023 NHS data reveals a stark reality: although Black people represent 13% of the kidney transplant waiting list, only 2% of deceased kidney donors are Black. ​ Candice is committed to changing this narrative, which is why she is launching ACKEE on World Kidney Day. ​ "This World Kidney Day, I am keen to speak about my personal experience in a bid to raise awareness on the importance of kidney health so others can avoid being in the same situation that I find myself in," says Candice. ​ Through advocacy and education, Candice strives to reduce the number of people in the black African Caribbean community developing kidney disease and going on to have kidney failure and needing a transplant. ​ "I also want to raise awareness on the strong need for Black African Caribbean people to donate their organs when they die," she adds. ​ "This World Kidney Day, we need people from the Black African Caribbean community to: ​ Make a commitment to learn more about looking after their kidneys, a good place to start is the African Caribbean Kidney Education Enterprise ™ - follow @ wearetheACKEE  on major social media platforms. ​ Record their organ donation decision and share their decision with their family members. ENDS Notes for editors ​ The African Caribbean Kidney Education Enterprise (ACKEE) ™ is a registered Community Interest Company passionate about educating Black African Caribbean people to care for their kidneys in life and to donate them in death. ​ For more information, to request an interview or to sign up to receive ACKEE press releases, please get in touch with our team: news@ackee.org.uk

  • Why you should consider becoming a deceased kidney donor

    As we launch the African Caribbean Kidney Education Enterprise™ (ACKEE) on World Kidney Day, 14 March 2024, there are 5808 people active on the kidney transplant list, including myself. It is estimated that around 7.2 million people in the UK have chronic kidney disease (CKD) stages 1-5, making it the 10th biggest killer worldwide. As CKD progresses, kidneys can fail (known as end-stage renal disease), losing their ability to function properly. This results in the need for dialysis or a kidney transplant (from a living or deceased donor) to survive. Neither is a permanent cure, they are only temporary treatments to help sustain life. I completely understand and appreciate that being a living kidney donor for someone in need of a kidney is a major life-changing decision, one not to be taken lightly. However, if done, it can give the gift of life that I, and so many others, desperately require. However, there is a strong need for Black African Caribbean people to donate their organs in the event of their death. Let me explain why. Donated organs can be used to save or transform the life of someone urgently in need. The best match for organ donation typically comes from someone of the same ethnicity due to the need for similarities in blood and tissue. The NHS Blood and Transplant Annual Report on Ethnicity Differences in Organ Donation and Transplantation 2022/2023 shows that Black people represented 2% of deceased kidney donors, 12% of deceased kidney donor transplants, and 13% of the kidney transplant waiting list. The report also shows that Black patients wait on average 649 days for a kidney, highlighting the urgent need for more Black people to donate to reduce the waiting time. Black patients have to wait significantly longer for a successful match than white patients due to a shortage of suitably matched donors. If more Black people donated their organs after death, transplant waiting times would reduce. Unfortunately, nobody lives forever, and we cannot take our organs with us when we die. What we can do is leave a rich legacy and help another person live a little longer, as our organs can be used to save or transform the life of someone urgently in need. How can you help? Consider becoming a deceased kidney donor Share your decision with your family 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 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.

  • Over 80 Years of Dialysis: A personal reflection on relying on life sustaining technology to survive

    Did you know that the first dialysis machine was invented more than 80 years ago? ​ A Brief History of Dialysis Dialysis is a remarkable medical treatment that has played a crucial role in saving lives since its development in the 1940s. Dr. Willem Kolff, a pioneering Dutch physician, is widely recognised as the father of dialysis. In 1943, he constructed the first dialyser, also known as an artificial kidney, laying the foundation for modern dialysis treatment. Dialysis performs essential functions that your kidneys normally do to maintain the body's balance, such as removing waste and extra fluids, regulating mineral levels in the blood, and helping to control blood pressure. My Personal Journey with Dialysis ​ In 2019, I was diagnosed with IgA nephropathy, also known as Berger's disease, a kidney condition with autoimmune origins. As the disease progressed, my kidneys failed, and in 2022, I began dialysis as part of my ongoing treatment. ​ Initially, I underwent peritoneal dialysis, a form of home dialysis meant to offer flexibility. However, looking back, I found it to be quite restrictive for my lifestyle. I had to administer four fluid exchanges a day, every four hours, making it challenging to plan activities away from home. As someone with a portfolio career, balancing different professions including being a full-time podcast producer, a freelance radio presenter, and a travelling DJ, this restriction proved overwhelming. Traveling, especially overseas, became an incredibly stressful endeavour as I had to manage the logistics of carrying dialysis fluid with me. In March 2023, complications with peritoneal dialysis led to pneumonia, resulting in hospitalisation. It was then, in June 2023, that I decided to switch to hemodialysis via a line. This decision proved to be the best for my health. I now undergo hemodialysis three times a week, with each session lasting 3.5 hours, and I am thriving! I feel that it is important to note that alongside this life-saving treatment, several other factors contribute to my wellbeing. I am fortunate that my dialysis centre is close to my home, and that my sessions are scheduled at midday, allowing me to maintain a balance between work and treatment. I also prioritise a healthy lifestyle, ensuring I eat well, get enough rest, and take necessary supplements to keep my body balanced. Dialysis is not a cure; rather, it is a life-sustaining treatment. Without it, I would not survive. The Mission of ACKEE Having experienced kidney failure firsthand, I am immensely grateful for the availability of dialysis treatment. However, my journey has also taught me the importance of preventing kidney disease as well as having these amazing treatment options available. This realisation led me to establish the African Caribbean Kidney Education Enterprise (ACKEE). Our mission is simple yet profound: to educate Black African Caribbean communities about kidney health and the importance of organ donation.  By fostering dialogue, promoting healthy lifestyles, and raising awareness, we aim to create a future where kidney disease is less prevalent in the Black community. Our vision is to reduce the number of people dependent on dialysis by advocating for kidney health and encouraging organ donation. I invite you to join us in our mission to advocate and educate. A great place to start is to follow us on social media @wearetheackee where you can engage with our posts and learn more.  Together, we can make a difference in the fight against kidney disease. ​ ​How can you help? Consider becoming a deceased kidney donor Share your decision with your family 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 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.

  • Black patients wait 6 months longer for a kidney transplant than white patients

    "Black patients wait 6 months longer for a kidney transplant than white patients." This stark reality was highlighted in the NHS Blood and Transplant Annual Report on Ethnicity Differences in Organ Donation and Transplantation 2022/2023, first published in October 2023. The NHS data shows that Black patients are waiting significantly longer for a kidney transplant than white patients. Median waits are 649 days for Black patients compared to 463 days for white patients (page 13 of the report). In 2021/2022, median waits were 735 days for Black patients and 488 days for white patients. While it is encouraging to see that the waiting times have reduced, there is still a long way to go. There is an urgent need for Black African Caribbean people to donate their organs in the event of their death. Unfortunately, nobody lives forever, and we cannot take our organs with us when we die. What we can do is leave a rich legacy and help another person live a little longer. Our organs can be used to save or transform the life of someone urgently in need. How can you help? Consider becoming a deceased kidney donor Share your decision with your family 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 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.

© 2024 African Caribbean Kidney Education Enterprise ™

Community Interest Company - CIC registration: 15550042

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