Kidney Support Group (KSG)

✍️ ✉️ An open letter to all kidney disease patients. A must read. 📖 #ChronicKidneyDisease

“I laughed today… and felt guilty for it” 😢 I laughed today. Proper laugh. The kind that makes your stomach hurt a bit and for a second you forget everything. And then I stopped. Because for a moment I thought… “Do I look too okay to be this ill?” Living with CKD does something strange to your head. You start questioning your own happiness. Like you need permission to feel normal. So I’m asking honestly… Do you ever hide your good moments because you’re scared people won’t believe how sick you are? Because I do. 👇 I’d genuinely like to know I’m not the only one. #CKD #ChronicKidneyDisease #InvisibleIllness

Interested in how life with CKD can impact you and your work life? Listen to this podcast! 🌟

@ElliotCEvans1 Thank you so much for showing this. It is extremely important to share this kind of information and raise awareness. Especially the challenges between managing multiple chronic conditions! You have a lot going on.

@KSGSupportGroup I’m doing ok. Could probably do better but it’s a leaning process. I did recently do this though - buzzsprout.com/2158715/episod… 1 of 3 parts. Might be interesting for you.

How did you feel when you were diagnosed with CKD? 💭 Being told you have Chronic Kidney Disease (CKD) can bring a wave of emotions that are hard to explain. For many people, the diagnosis comes with shock, fear, confusion, anger, sadness, or even relief at finally having answers. You may have wondered: 🔹 What does this mean for my future? 🔹 Will I need dialysis? 🔹 Can I still live a normal life? 🔹 Why did this happen to me? 🔹 What do I tell my family? The truth is, there is no “right” way to feel after a CKD diagnosis. Everyone’s kidney disease journey is different. Some people feel numb. Others become motivated to make lifestyle changes. Many feel overwhelmed by medical terms, appointments, blood tests, and uncertainty. If you’ve recently been diagnosed with kidney disease, please know you are not alone. Thousands of people across the UK live with CKD and continue to work, raise families, travel, exercise, and enjoy life while managing their health. 💙 Your feelings are valid. 💙 Your journey matters. 💙 Support is out there. 👇 We’d love to hear from you: How did you feel when you were first diagnosed with CKD? Your story could help someone else feel less alone. #CKD #ChronicKidneyDisease

Sarah’s Story – A Journey of Strength in the Face of Stage 5 CKD 🌟 Rushed to hospital with shortness of breath, Sarah Eke discovered she had Stage 5 CKD with kidney function at just 2%. What started as a month of feeling unwell turned into shock, fear, urgent dialysis decisions, and a complete life reset overnight. Now on dialysis three times a week, Sarah has adapted her work, carefully manages her diet to control potassium and phosphate, and navigates fatigue, fluid changes, and the emotional rollercoaster — all while living with health anxiety. She’s on the deceased donor transplant list, with family stepping forward as potential living donors. Through it all, Sarah chooses strength: “Your condition doesn’t control you — you are in control.” 💬 “There’s always a way through. Embrace the good days with everything you have.” This honest and inspiring story is for anyone facing Stage 5 CKD, starting dialysis, waiting for a transplant, or needing encouragement on the tough days. 👉 Read Sarah’s full story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/sarah-s-s… Drop a ❤️ if Sarah’s words resonate with you. Tag a friend or family member who needs this message of hope today, and share one thing that gives you strength in the comments. #Stage5CKD #CKD #DialysisLife #KidneyFailure #KidneyTransplant

I can imagine, most people don’t know they have CKD, and can even get to Stage 5 without knowing, this is why checking BP and monitoring your health is critical. I hope you are keeping well. As a Stage 4 nearly Stage 5 patients myself, I am aware of the want, to keep stage 5 as far away as possible.

@KSGSupportGroup What happened to stage 1 & 2? Being told you are stage 3 is a major shock, especially when you think you’ve been doing ok but it’s about monitoring, maintaining and keeping stage 4 as far away as possible.

After Years of Being Told It Was “In My Head” – Becky’s Fight to Be Heard 🌟 Years of severe pain, blood in her urine, kidney infections, hospital admissions, and being dismissed by doctors who said it was all in her head. Becky endured unimaginable physical agony and emotional trauma — including moments so dark she thought ending the pain was the only way out. She was treated like she was attention-seeking instead of seriously ill… until one doctor on a kidney transplant ward finally listened. He suspected Nutcracker Syndrome and LPHS (Loin Pain Hematuria Syndrome). After being truly heard, Becky got answers, the right medication (Clonidine became her lifesaver), and began to regain some control. Today she still faces a rollercoaster — fatigue, hospital visits, missed family moments — but she’s grateful for compassionate staff, her support network, and the power of being believed. 💬 “If you think something is wrong and no one will listen… believe there is someone out there who will stand by you and help.” This raw, powerful story is essential reading for anyone facing chronic pain, invisible illness, misdiagnosis, or fighting to be taken seriously with kidney disease, LPHS, or rare conditions. 👉 Read Becky’s full story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/after-yea… Drop a ❤️ if you’ve ever had to fight to be believed. Tag someone who needs this message of resilience and hope today, and share your own experience in the comments — you are not alone. #LPHS #NutcrackerSyndrome

💤 Why is fatigue so overwhelming in kidney (renal) failure? If you’ve ever felt exhaustion that sleep just doesn’t fix, you’re not alone. Fatigue is one of the most common and life-altering symptoms of chronic kidney disease (CKD) and renal failure. When kidneys aren’t working properly, your body starts to struggle in several ways: 🩸 Anaemia (low red blood cells) Healthy kidneys produce a hormone called erythropoietin that helps make red blood cells. In kidney disease, this drops — meaning less oxygen gets around your body → leaving you constantly drained. 🧪 Toxin build-up Healthy kidneys filter waste. When they can’t, toxins build up in the blood, which can make you feel sluggish, foggy, and exhausted. 😴 Poor sleep quality Many people with renal failure also deal with restless legs, itching, or frequent night-time waking — all of which worsen daytime fatigue. ⚖️ Energy imbalance Your body is working overtime just to maintain balance, even when you’re resting. 💡 What does it feel like? Not just “tired”… but heavy, constant exhaustion that doesn’t improve with rest, coffee, or sleep. 📊 Why this matters Fatigue is often the earliest and most disruptive symptom of kidney disease — impacting work, exercise, mental health, and quality of life. 💬 If you’re living with CKD or renal failure, how does fatigue affect your day-to-day life? You’re not alone in this. #KidneyHealth #RenalFailure

Katie’s Story – Fighting on Every Front with Kidney Disease 🌟 From her teenage years, Katie has been battling persistent pain and symptoms that took years to fully understand. Now 37, she lives with Chronic Kidney Disease (CKD) and LPHS (Loin Pain Hematuria Syndrome). What started as a confusing condition in her early teens has progressed into dialysis, daily fatigue, pain, and constant adaptation. Every part of life — routines, energy, plans, and emotions — has had to change. There are overwhelming days where isolation hits hard, but Katie keeps pushing forward by listening to her body, adjusting, and finding new ways to enjoy what she loves. 💬 “You adapt. You adjust. You find new ways to do things you love, even if they look different now… Take things day by day. You’re not alone.” This honest and resilient story is for anyone living with CKD, on dialysis, dealing with chronic pain, or feeling the emotional weight of kidney disease. 👉 Read Katie’s full story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/katie-s-s… Drop a ❤️ if you know the fight of invisible symptoms and chronic illness. Tag a friend who needs this reminder of strength, and share one thing that helps you keep going in the comments. #CKD #KidneyDisease #DialysisLife

💚 Invisible Illness Can Be Lonely One of the hardest parts of living with kidney disease or chronic illness is that so much of it cannot be seen. You may look “fine” on the outside… while carrying exhaustion, pain, anxiety, brain fog, swelling, fear, and the weight of constant health worries on the inside. Because people cannot always see it, they may underestimate it. Comments like: 💬 “But you look well.” 💬 “Just drink more water.” 💬 “Everyone gets tired.” 💬 “At least you don’t look sick.” Often these words are not meant to hurt — but they can still sting deeply. What people don’t see 👇 They do not see the fatigue that hits before the day even starts. They do not see the fear after blood tests or appointments. They do not see the overthinking, the waiting, the stress of every symptom. They do not see the brave face you have learned to wear. Sometimes the people closest to us struggle most to understand what they cannot physically see. And that can feel incredibly isolating. A reminder ❤️ You are allowed to explain your condition gently. You are allowed to say: “Actually, this is serious.” You are allowed to correct misinformation. You are allowed to set boundaries. You are allowed to protect your peace and step back from conversations that drain you. The truth 💚 Not everyone will understand — and yes, that can hurt. But many people will listen if given the chance. Many people will care once they understand. And communities full of people who truly get it already exist. There are others carrying the same invisible weight. Others who understand the fatigue, the fear, the frustration, and the strength it takes just to keep going. You do not have to carry misunderstanding alone.

Joshua’s Story – My Dad’s Battle with Polycystic Kidney Disease (PKD) 🌟 He was just 9 years old when his world changed. Joshua found out his dad had Polycystic Kidney Disease (PKD). What followed was a family’s fight through declining health, painful dialysis sessions, endless hospital visits, and the fear that never quite left. Joshua gave up sports, birthday parties, and normal childhood moments to be by his dad’s side. Then came the kidney transplant — filled with complications and uncertainty. Through it all, the family grew closer, learning the true meaning of love and resilience. Today, Joshua’s dad is doing much better and is now writing children’s books to raise awareness about kidney disease. Their bond is unbreakable, and they cherish every moment. 💬 “This journey has shaped who I am. Living through my dad’s illness taught me just how fragile life can be, but also how powerful love, family, and resilience truly are.” This heartfelt story from a child’s perspective is a must-read for families affected by PKD, anyone supporting a loved one through CKD, dialysis, or transplant. 👉 Read Joshua’s full story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/joshua-s-… Drop a ❤️ if PKD has touched your family, tag someone who needs this message of hope, and share your own experiences in the comments. #PKD #PolycysticKidneyDisease #KidneyDisease

🩺 Kidney Disease Stages by eGFR Hearing terms like Stage 3 or Stage 4 can feel frightening. Many people instantly assume the worst. But kidney stages are simply a way for doctors to understand kidney function, monitor changes, and plan the right care. They are medical tools — not labels of your worth or future. 💚 🟢 Stage 1 CKD – eGFR 90+ Kidney function is still considered normal, but there may be signs of kidney damage such as protein in the urine, cysts, structural changes, or inherited conditions like PKD. Many people feel completely well and only discover this through tests. 🟡 Stage 2 CKD – eGFR 60 to 89 A mild reduction in kidney function with evidence of kidney damage. For many, life feels normal at this stage. It is often a time for monitoring, lifestyle support, and protecting long-term kidney health. 🟠 Stage 3a CKD – eGFR 45 to 59 Mild to moderate loss of kidney function. This is often where closer monitoring begins. Blood pressure, medications, cholesterol, and diet may be reviewed more carefully to slow progression. 🟠 Stage 3b CKD – eGFR 30 to 44 Moderate to more significant reduction in kidney function. Some people may begin to notice symptoms such as fatigue, swelling, changes in urination, or higher blood pressure. Others may still feel well. 🔴 Stage 4 CKD – eGFR 15 to 29 Severe reduction in kidney function. This stage often brings conversations about future planning, transplant referral, dialysis education, and protecting as much remaining kidney function as possible. It can feel overwhelming — but knowledge and preparation are powerful. 🔴⚫ Stage 5 CKD – eGFR below 15 Kidney failure or near kidney failure. Some people may need dialysis or a transplant. Treatment decisions are based on symptoms, blood results, and overall health — not just one number alone. Important Truth ❤️ Your eGFR helps guide treatment, but it does not define your future. Some people remain stable for years. Some improve. Some need extra support. Every journey is different. You are not “Stage 4.”
You are not “an eGFR of 22.”
You are a whole person navigating something difficult with strength you may not even realise yet. 💚 #KidneyHealth #CKD #KidneyDisease

Mondeson’s Story – Life, Loss & Living with Stage 4 CKD 🌟 At 36, while fighting pneumonia in hospital, Mondeson received life-altering news: Stage 4 Chronic Kidney Disease. His kidney function had crashed as low as 11% (now fluctuating 24–30%). With a history of malignant hypertension, a ruptured kidney, obstructions, surgeries, stents, and a fistula already prepared for future dialysis — everything changed in an instant. His first thoughts weren’t about himself, but his wife Shauntae and their two-year-old son. He had to leave his beloved career as a classroom teacher, grieve the person he once was, and rebuild through deep exhaustion and emotional lows. Yet through it all, family became his anchor. Now he’s completed transplant assessments with an approved living donor, waiting for the right moment when his function drops enough for the transplant to go ahead. 💬 “CKD changes you. You will not be the same person you were before. But it is not the end of your story — it’s a new chapter.” This honest, heartfelt story speaks to anyone living with Stage 4 CKD, facing uncertainty, preparing for dialysis or transplant, or supporting a loved one through chronic illness. 👉 Read Mondeson’s full story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/mondeson-… Drop a ❤️ if you’ve had to grieve parts of your old life while fighting CKD. Tag someone who needs this message of resilience today, and share one thing that keeps you going in the comments. #Stage4CKD #ChronicKidneyDisease #CKD #KidneyFailure

Why Blood Pressure Matters So Much in CKD? 💪 For many people, high blood pressure is the first warning sign that something may be wrong with their kidneys. It often has no symptoms, no pain, and no obvious signs — which is why it is sometimes called the silent killer. You can feel completely normal while damage is quietly happening in the background. What is blood pressure? Blood pressure is the force of your blood pushing against the walls of your arteries as your heart pumps it around your body. It is written as two numbers, for example 120/80: 🔹 Top number (systolic) = pressure when the heart beats
🔹 Bottom number (diastolic) = pressure when the heart rests between beats What is a normal reading? In general: ✅ Around 120/80 is considered healthy for many people
⚠️ 140/90 or above may be high (guidelines can vary)
⚠️ People with CKD are often advised to aim lower depending on their doctor’s advice Why is it important in CKD? Your kidneys contain tiny delicate blood vessels that filter waste from your blood every minute of every day. When blood pressure stays high for too long, it places extra strain on those filters. Over time, that pressure can cause scarring and reduce kidney function. High blood pressure can both: 🔹 Cause kidney disease
🔹 Worsen existing kidney disease It can become a cycle — damaged kidneys can also make blood pressure harder to control. Why is it often the first indicator? Many people discover kidney problems after a routine blood pressure check. That is because kidneys help regulate blood pressure through salt, fluid balance, and hormones. When kidneys are under stress, blood pressure often rises early — sometimes before other symptoms appear. What can help control it? 💚 Take prescribed medication regularly
💚 Reduce salt intake
💚 Stay active where possible
💚 Maintain a healthy weight
💚 Manage stress
💚 Monitor readings at home
💚 Keep regular appointments A reminder ❤️ Checking your blood pressure is not about fear — it is about protection. One small cuff on your arm can give vital clues about your heart, kidneys, and future health. Sometimes the simplest checks can save the most function. #KidneyHealth #BloodPressure #CKD

Michelle’s Story – Choosing Strength, Mindset & Control After Kidney Disease 🌟 Diagnosed in 2011 after a routine scan for stomach issues, Michelle (now 39) heard the words she half-expected but still wasn’t ready for: you have kidney disease. It runs in her family, and like many, her first reaction was determination — “I’m going to fix this.” Instead of letting fear take over, Michelle chose to take control of what she could. Through consistent movement, meditation, breathwork, and nutrition, she has kept her kidney cysts stable and even improved her kidney function compared to her initial diagnosis. 💬 “CKD has made me stronger — mentally and physically. There is always something positive if you choose to look for it.” This is a powerful story for anyone newly diagnosed, living with Chronic Kidney Disease (CKD), or feeling overwhelmed by it. Michelle shows that mindset and daily choices can truly shift your journey. 👉 Read Michelle’s full inspiring story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/michelle-… Drop a ❤️ if mindset has helped you on your kidney journey, tag someone who needs encouragement right now, and share one positive choice you’ve made in the comments! #ChronicKidneyDisease #CKD

🩺 What Is eGFR Really? For many people, the first time they hear the word eGFR is during a frightening conversation with a doctor. Suddenly, one number on a blood test can feel like it holds your entire future in its hands. You may find yourself checking results obsessively, panicking when it drops, feeling relieved when it rises. That emotional rollercoaster is incredibly common. But understanding what eGFR actually means can help take some of that fear away. 💚 What does eGFR stand for? eGFR means estimated Glomerular Filtration Rate. That sounds technical, but simply put: it is an estimate of how well your kidneys are filtering waste and excess fluid from your blood. Your kidneys act like your body’s natural filtration system, cleaning the blood every minute of every day. The eGFR number is calculated using a blood test (usually creatinine), along with factors such as age and sex. It is an estimate — not a perfect measurement. What is a normal eGFR? In general: 🔹 90 or above = Usually considered normal kidney function (if there are no other signs of kidney damage) 🔹 60 to 89 = Mildly reduced function, which can sometimes be normal depending on age, especially if no other kidney issues are present 🔹 Below 60 for 3 months or more = Usually indicates chronic kidney disease (CKD) A reminder ❤️ Your eGFR is an important tool, but it is not your identity. It is one number doctors use to guide care — not a prediction of your worth, future, or strength. If your number worries you, speak with your renal team and look at the bigger picture, not just one result. ✨ You are more than a lab result. #KidneyHealth #CKD #KidneyDisease

From Stage 5 Kidney Failure to an Unbelievable Break – GB’s Story 🌟 Working in Canada one day, feeling “off” the next — headaches, breathlessness, then hospital. GB’s blood pressure was 220/190, lungs full of fluid, and kidneys barely functioning. Diagnosed with Stage 5 CKD (eGFR 4–7), he flew home to the UK and started an intense journey: central line struggles, painful dialysis sessions in Windsor, passing out, blood pressure crashes, and all the emotional toll that comes with it. At 150kg, GB decided to take control. He transformed his diet, lost an incredible 60kg (down to 90kg today), became transplant-list ready… and then something extremely rare happened. After pushing for a line change, doctors noticed his creatinine had stabilised. They took him off dialysis in August 2025 — and he’s still off it, now monitored remotely. Even the doctors called it unusual for someone at Stage 5 to come off after two years. 💬 “I’m grateful for this break, even if it turns out to be short-lived.” This story is full of raw honesty, resilience, massive weight loss motivation, and hope for anyone on dialysis or facing advanced CKD. 👉 Read GB’s full inspiring story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/from-stag… Drop a ❤️ if you’ve ever fought through dialysis or celebrated a win against the odds. Tag a friend who needs encouragement, and share your own experiences in the comments! #Stage5CKD #KidneyFailure

“You don’t look ill.” 😮 Those four words cut deep — every single time. They’re smiling in the photos. Showing up for family. Cracking jokes like everything’s normal. But inside? Their kidneys are quietly shutting down. They wake up exhausted before their feet even hit the floor. Their body swells with fluid it can’t flush out. The constant itch never stops. Brain fog turns simple tasks into a battle. And the fear — that heavy, silent fear of what’s coming: dialysis, transplant waiting lists, or worse. You can’t see the toxins building in their blood. You can’t see the hours spent hooked to machines. You can’t see the nights they lie awake wondering if they’re becoming a burden to everyone they love. This is invisible illness. Chronic Kidney Disease doesn’t always show until it’s already advanced. Millions are walking around looking “fine” while their bodies fight a brutal, silent war. 9 out of 10 people with CKD don’t even know they have it until serious damage is done. Next time someone says “But you don’t look sick…” Remember: That doesn’t make their pain, fatigue, or daily fight any less real. To every kidney warrior reading this who’s been dismissed, doubted, or told to “just push through” — we see you. Your struggle is valid. Your strength is unbreakable. You are not faking it. You are surviving something most people could never understand. Drop a ❤️ if you’ve ever heard “you don’t look ill.” Comment your biggest unseen battle below — let’s remind each other we’re not alone. Tag someone who needs this today. Share it wide. Awareness saves kidneys and lives. Join the real talk and support in our Discord community — link in bio. No judgment. Just understanding. #YouDontLookSick #InvisibleIllness

The Call Came at 5AM… Christian’s Incredible Kidney Transplant Story 🌟 One day you’re living a completely normal life. The next? You’re in A&E, told you were born with only one kidney — and it’s failing fast. At just 28, Christian’s world flipped overnight into end-stage kidney failure. From emergency dialysis (the physical and mental toll is real), battling fear and uncertainty, to leaning on his mum, brother, and friends for support — Christian kept going. Then came the moment every waiting patient dreams of… ☎️ 5am phone call from Addenbrooke’s Hospital: “We have a kidney for you.” Now post-transplant and in recovery, Christian is stepping into a new chapter with hope and gratitude. 💬 “Dialysis kept me alive while I waited… but that call changed everything.” This powerful patient story is a must-read for anyone facing chronic kidney disease (CKD), on dialysis, on the transplant list, or supporting a loved one. It’s honest about the tough days and full of hope for what’s possible. 👉 Read Christian’s full story on the Kidney Support Group blog: kidneysupportgroup.co.uk/blog/the-call-… Drop a ❤️ if you’ve ever waited for that call, tag someone who needs encouragement today, and share your own transplant or dialysis journey in the comments — your words could give someone strength! #KidneyTransplant #CKD

Think you’re fine? CKD often shows zero symptoms until stage 3 or 4… 😮 👀 Watch for: • Foamy/bubbly urine (protein leak) • Swollen feet/ankles • Constant fatigue or itchy skin • Peeing more/less than normal • Shortness of breath or nausea • Increase in Blood Pressure If any of these sound familiar, it’s time to talk to your doctor. A simple blood + urine test can catch it early. You’re not alone — thousands in our group have been there and are thriving with support. ❤️ 🏷️ Tag a friend or family member who needs to see this. 💬 Join Discord: chat.kidneysupportgroup.co.uk #CKDSymptoms #KidneyFailure