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Hi! Whether you're here because you've recently been diagnosed with kidney-related issues, you're a long-time patient, a donor, or just curious—welcome! I'm so glad you're here. My goal with this blog is to share my journey living with kidney failure and as a transplant patient. I’ll be opening up about my experiences, the challenges, and the moments of hope along the way, with the hope that it helps you better understand what it’s like for someone living with kidney disease. Below, you'll find a section where you can ask questions or share your own thoughts—let's create a community where we can support and learn from each other. I hope you enjoy reading, and maybe even learn something new along the way!

FAT1 Gene
Diagnosis

Kidney Advice

The Anatomy of Kidneys

Whether you're here as a patient or just someone who’s curious, welcome! You might not think about your kidneys much —most people don’t—and they don't get as much attention as, say, the heart or brain, but they actually do a ton of important work behind the scenes in keeping our bodies running smoothly. Think of them as the body’s little cleaning crew, constantly filtering waste and balancing all kinds of things to keep us feeling good. I’m going to break down exactly how they work, what goes wrong when they’re not functioning properly, and why taking care of them is so crucial. Trust me, by the end of this, you'll have a whole new appreciation for those little organs and have a much better understanding of why the kidneys are worth knowing about and how they impact overall health!

Okay, let’s get into how kidneys actually do their thing. You might be surprised to know that each kidney is made up of around a million tiny filters called nephrons—think of them as little sieves that filter out the waste from your blood. Every time your blood passes through these filters, the kidneys separate out things the body doesn’t need, like extra water, salt, and waste products from the foods you eat. It’s like your kidneys are constantly making sure your blood is clean and balanced. Now, here’s the cool part—your kidneys don’t just filter waste. They also help keep your blood pressure in check by controlling how much salt and water your body holds onto. And, if you're low on oxygen, they send out signals to produce more red blood cells. It’s like having your own internal management team, keeping everything running smoothly! After all the filtering, the waste gets turned into urine, which is then passed out of the body through the bladder. But it's not all just about waste removal. Your kidneys also help manage the balance of important things like potassium, calcium, and phosphorus—things that help your muscles, nerves, and bones stay healthy. So, in a nutshell, your kidneys are working hard to keep you healthy and balanced every day, even when you don’t realize it. 

So, what happens when your kidneys aren’t working like they should? Well, since the kidneys are responsible for filtering waste and keeping everything balanced, when they start to fail, all of that important work starts piling up. One of the first things that can go wrong is that waste and extra fluid begin to build up in your body. This can lead to swelling, especially in your feet, ankles, and hands. And because your kidneys aren’t able to get rid of the excess fluid, you might start feeling bloated or short of breath. Another issue is that your blood pressure can go up. Since the kidneys help regulate blood pressure by controlling how much salt and water you hold onto, if they’re not functioning properly, they can make it harder to keep your blood pressure in check. Over time, this can lead to more problems with your heart and other organs. When your kidneys aren’t working, they also lose their ability to balance things like potassium, calcium, and phosphorus. This imbalance can mess with your muscles, bones, and even your nerves, making you feel weak, tired, or even dizzy. And since kidneys also help produce red blood cells, kidney failure can lead to anaemia, making you feel more fatigued than usual. What’s tricky is that sometimes kidney problems don’t show up right away. Symptoms can develop slowly, and by the time you notice them, the kidneys may already be struggling. That’s why regular check-ups are so important to catch any issues early before things get worse. 

Looking after your kidneys is one of the best things you can do for your health overall. They're doing so much for you behind the scenes, so keeping them in good shape means everything else runs more smoothly. But how do you take care of them? Don't worry—it’s easier than you think. There are a few simple things you can do to help keep your kidneys happy and healthy!

1. Drink enough water: Water is your kidneys’ best friend! Staying hydrated helps them filter out waste properly. Aim for about 6-8 glasses of water a day, but if you’re exercising or it’s super hot outside, you might need a bit more. Just don’t go overboard—too much water can actually be tough on your kidneys too. Balance is key!

2. Eat a healthy diet: A good diet goes a long way in keeping your kidneys healthy. Load up on fruits, veggies, whole grains, and lean proteins—they’ll get the nutrients your kidneys need. And try to cut back on salt and processed foods, since they can raise your blood pressure and put extra strain on your kidneys. Oh, and less sugar helps, too, since it can reduce your risk of diabetes, which can lead to kidney problems.

3. Get moving: Exercise isn’t just great for your heart and muscles—it’s also awesome for your kidneys! Staying active helps keep your blood pressure in check, maintain a healthy weight, and boost blood flow, all of which helps your kidneys do their job more effectively.

4. Keep an eye on your blood pressure: High blood pressure is one of the main things that can mess with your kidneys. So, if you’re keeping your blood pressure healthy, you’re also giving your kidneys a helping hand. Follow your doctor’s advice, eat well, stay active, and take any meds they’ve prescribed if needed.

5. Cut back on alcohol and smoking: I know it’s tough, but smoking and drinking too much can harm your kidneys over time. Smoking messes with blood flow, and too much alcohol can lead to kidney disease. Cutting back (or quitting) gives your kidneys the best shot at staying healthy for the long run.

6. Get regular check-ups: Even if you feel fine, regular check-ups are super important. Especially if you have a family history of kidney disease or other things like high blood pressure or diabetes that put you at risk. The earlier any issues show up, the easier they are to handle.

By doing these things, you’re not just helping your kidneys—you’re giving your whole body a boost. And the best part? These habits are pretty easy to add to your daily routine, and they’ll make a big difference!

My Kidney Story

I want to start by saying that everyone’s experience with kidney failure is unique. There’s no ‘one-size-fits-all’ way to go through it, and it can look completely different for each person. People handle it differently, both physically and mentally. The symptoms, medications, and treatment plans can all vary from person to person. That’s why it’s so important not to compare your own journey to someone else’s. My story will be completely different from yours, but I’m sharing it in the hope that it might help someone. So, here we are.

 In May 2019, just a week before I was about to sit my GCSEs, I was diagnosed with stage 3 kidney failure. As you can imagine, this news was incredibly overwhelming and stressful. The whole situation was so new and confusing for me, especially since I hadn’t even known my kidneys were failing. In fact, I didn’t really understand how kidneys worked or what symptoms I should be watching for.

Once my doctors explained the condition and its symptoms, everything started to click. One major symptom was fatigue, which instantly made sense to me. I had always been an energetic teen, balancing dance, Physical Education (PE), and core PE without getting tired. But as time went on, I found myself feeling more and more exhausted. Another symptom I was dealing with was shortness of breath. Given my GCSE subjects, I was exercising a lot—several hours each week—and walking to and from school. In other words, my cardio health should have been in pretty good shape.

Despite the fatigue and shortness of breath, what really raised alarm bells for me were the shocking number of bruises I had on my body. It didn’t take much—just a tap on the arm—and I would bruise. My mum booked me in for a blood test at the GP, suspecting that I might have diabetes, since my great-grandmother on both sides of my family had been diabetic. Weeks—honestly, it felt more like months—went by before I received the test results. I had visited the GP again for an ear infection, and during that appointment, they mentioned the blood test results. That’s when the doctor informed me I needed to be admitted immediately for further testing. Naturally, this caused a lot of worry for my family despite the fact they were no strangers to kidney issues in my family, I won’t go into the details though , as they were unrelated to my own condition.

 

Even though I was being admitted to the hospital for what seemed like a serious issue, I couldn’t help but be more focused on revising for my GCSEs—a bit silly, I know. After several days of blood tests and ongoing tests, I was told I would be transferred to St. Thomas's Hospital in London for a biopsy. I stayed there overnight, but, in the end, the biopsy never happened and I was discharged. After my discharge, I had frequent appointments at the Evalina, monitoring my kidney function which slowly depleted.

 

In August, I moved to the Midlands to start college, and my kidney care was transferred to the Queen's Medical Centre (QMC) in Nottingham. Unfortunately, my kidney function continued to decline, and by December, I had reached Stage 4 kidney failure. At that point, I could no longer urinate, which felt incredibly strange. I would still have the sensation of needing to pee, but nothing would happen. My period also stopped, which may not be relevant to everyone, but it was another major change. As a result, I had to start peritoneal dialysis.

Since being diagnosed with kidney disease, I had started several medications, including one to manage my high blood pressure, a tablet for my vitamin D, the occasional iron infusion, and a few others. My main struggle had been high blood pressure, which led to multiple hospital admissions due to hypertensive seizures. Another issue I developed was renal anaemia, which was initially treated with iron infusions. But soon, I had to start giving myself injections. The problem? I hated needles. I could just about tolerate blood tests, but the thought of injecting myself made me want to pass out. 

Going back to the seizures, I had several severe ones between 2020 and 2022. One seizure was particularly bad, causing me to struggle to breathe, which ultimately led to me needing a tracheotomy. I was placed in a medically induced coma for nearly two months to allow my body to heal—not just from the tracheotomy, but also from the damage caused by the seizures. The last seizure I had was in April 2022.

At first, doctors suspected my seizures might be due to epilepsy, so I was prescribed phenytoin, an epilepsy medication, for a while. However, it was eventually discovered that my seizures were caused by high blood pressure leading to hypertensive encephalopathy. As a result of these seizures, I also experienced short-term memory loss for some time. Luckily I'm fine now. 

Some of the side effects from the medications I was on included developing a “rugger jersey spine,” which was incredibly uncomfortable on my back. Between 2022 and December 2023, the symptoms of kidney failure worsened, and my kidney function continued to decline, eventually reaching Stage 5. I felt constantly fatigued, with my daily routine revolving around waking up, taking my medications, napping until dinner (usually around 7 pm), and then going back to sleep. Another persistent symptom was feeling cold all the time. Even if it was 20 degrees outside, I would be shivering and wrapped in a blanket.  There was also the constant itchy skin, feeling faint and dizzy. I was also constantly nauseous, vomiting almost every night in the months leading up to my transplant. On top of that, I lost my appetite, especially for certain foods—particularly pork and fish, which would make me instantly throw up. (Sorry for the TMI!) On top of all the physical symptoms, there was the emotional weight of it all. It was hard not to feel overwhelmed with everything my body was going through, and at times, it felt like there was no end in sight. 

 

The transplant work-up began in the first half of 2023, involving several important steps. I had meetings with my surgeon, who was absolutely amazing, as well as an assessment with a psychologist to ensure that both myself and the donor were mentally prepared for the surgery. I was also given a tour of the hospital where the transplant would take place, and underwent a series of tests to make sure my body was ready for the procedure. I had a donor rather than going on the waitlist and I was extremely lucky to have family members lining up to donate. My grandad was the first to volunteer and get the work up to donate, unfortunately his history of heart issues meant he wasn't an appropriate candidate, which naturally he was disappointed about. Next, without hesitation my mum volunteered. She had to undergo various tests to make sure her kidney was suitable. This included bloodwork, urine tests, DNA matching (there has to be at least a 50% match), blood type match (She was an O negative, so she is a universal blood donor), a stress test (a test which monitors the heart rate during exercise) and a few others. After it was confirmed she could donate, a date for the operation was set. It was originally mid October 2023, but after a heart scan, they found I had edema around the heart (also known as pericardial effusion), so they decided to postpone the transplant because it would've been unsafe and potentially life-threatening to continue. This is when they started me on haemodialysis to remove the fluid from around the heart. 

Before the transplant, both my donor and I had to follow strict isolation protocols. This was crucial to minimize the risk of illness or infection, as any such setback could have led to the postponement of the transplant. Maintaining a healthy environment during this period was essential to ensure the success of the procedure.

It can be terrifying and overwhelming having a major surgery, especially with all the risks. In fact, the day I was due to have my surgery, I had major pre-surgery anxiety, and had a panic attack to the point I vomited - yes, I threw up. All I could think was if the surgery would go okay? Would it work? I also had the fear of waking up during surgery, even though I knew it was highly unlikely. When it came to sign the consent forms for the surgery, I fully freaked out. Reading through the risks put me in an irrational spiral and I almost wanted to rethink the surgery. I would recommend to any readers NOT to do that. Once I was spoken to about how rare these complications actually are, it eased my nerves. I came up with a way to calm myself and I'll share that with you, hopefully it will do the same for you. Imagine there are 99 Galaxy minstrels on a table, that is the amount of patients having a transplant. Now picture a skittle amongst all those minstrels - lets say it's a green one - that's the one unlucky person with a complication. You could probably actually do this with real minstrels and skittles, but being that I was sat in a hospital bed preparing for surgery meant that the best I could do was picture it. Obviously the statistic I've given isn't going to be 100% accurate because it depends on the complication. But the important thing to remember is you're going to be in a room with fully qualified surgeons and doctors, and no matter what complication arises they will be fully equipped and prepared to deal with it. 

 

 Though the road to this point had been filled with unexpected challenges, it also marked the beginning of a new chapter—one that would not only change my body but my outlook on life. In the next part of my journey, I'll take you through the treatment processes (dialysis), the transplant itself, and the physical hurdles that came with it. It's been a rollercoaster, but as I look back, I realize how important it was to face each obstacle with hope and the support of those around me. This part of my story may have been difficult, but the next one holds the promise of a fresh start—something I never thought I'd get to experience again. ​​​​

Treatment/ Transplant

So, like I mentioned earlier, I had peritoneal dialysis! It was my first treatment (aside from meds, of course), and I had no idea what to expect.They performed surgery for the catheter, and yes, I was put under anaesthesia (thank goodness!). It's been about 5 years since then, so some of the details are a little hazy now, but I’ll do my best to explain what I remember.  There are two main types of peritoneal dialysis: CAPD and APD. For me, I mostly did APD, which is machine-assisted, but by the end of my time with peritoneal dialysis, I switched to a little bit of CAPD too. 

So... peritoneal dialysis is having a catheter which is surgically placed in the lower abdomen. The catheter is like a flexible and hollow tube which allows the process of peritoneal dialysis (PD) AKA home dialysis, to be done. I don't know if it's the same for every person so don't quote me on it, but for me it was inserted through the belly button in surgery. It doesn't hurt or feel uncomfortable, but it feels strange, which I guess was to be expected because a foreign object in the body. And sensitive, but most surgeries are. The tube which hangs from your tummy can be a short one or a slightly longer one, which are normally switched out every few months for hygiene and comfort reasons. For me it was always depending on my preference. I don't know if you're squeamish, so if you are, I apologise, but you could feel the tube by your belly button. It's a strange thing to feel something that is inside of you. I had no complications and after they did the first round of dialysis, I was discharged within a couple of days after the surgery. 

 

 The whole PD process was definitely a strange sensation. It wasn’t painful, but it felt a bit like you need to pee (even though, obviously, you don’t!). It was kind of weird to get used to, but not uncomfortable. Essentially, the process of peritoneal dialysis involves the catheter allowing sterile fluid to be introduced into the peritoneum—the lining of the abdominal cavity. This fluid helps to clean the blood of waste products inside the body. This process is called diffusion. The catheter is connected to a long tube, which then connects to a machine that heats the dialysis fluid. This fluid is pumped into your peritoneum, where it acts like a filter to remove the waste. Then the waste empties into the waste bag, the waste kind of looks like pee, which in a way, I suppose except it is mostly the fluid.. 

 Dialysis is different for everyone, and it really depends on how much your kidneys are struggling. For me, I had it every night for up to 10 hours. But some people might only need dialysis every other night, for just a few hours. It varies a lot! There is also different strengths of the solution which is like a glucose mixture, which pulls the toxins from the blood. Some people, like myself, have to have a mixture of the two types of peritoneal dialysis because their kidneys simply just cannot do their job anymore, so the patient relies fully on the dialysis to support them. 

I didn't really have much experience with CAPD as I was only on it for a couple of months at most, but to the best of my knowledge, I believe it is very similar to APD except it is without a machine and instead done manually. Patients can do this up to 4 times a day.  You have two bags, one with fluid, one empty which are connected to your catheter. To set it up is simple, you hang the back of fluid slightly higher than your sitting height and connect the bag to you - and voila, it's done. First you empty the fluid out from the day before and then fill up with more. It takes between 20-30 minutes. I had to do one bag of CAPD a day, as well as using the machine in the night. I don't know the circumstances of why you would need a specific type of PD though, you would have to ask a medical professional.  

The way that doctors determine your prescription is very clever. They take your average weight and they will set up your machine to instil the amount of fluid according to your weight. So for example, I was around 53kg, so my doctor used this to decide the amount of fluid he should use for my prescription. Then when my dialysis does the final drain, I should weigh the same amount I did beforehand. If I weigh dramatically more or less, it means that the machine might be taking either too much or not enough fluid from my body. Another way of telling if there is too much fluid in the body is edema, which is the swelling of your body because of the excess of fluid. Edema will usually occur in the ankles, because gravity pills it down. You can tell if you have edema by pressing into your skin with pressure and a dimple remains. Waste removal is also where the strength of the glucose mixture comes into play, if blood or urine tests show too much creatinine and other waste product, it may need to changed to a stronger glucose solution. 

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Overall it's pretty alright. For me, I was on PD longer than the recommended amount of time which is normally around 1-2 years. I was

on it for almost 4 years. Towards the end, it became painful, with intense cramping, which kept me up at night and made me nauseas but that is only because I was on it longer than I should have been, so you shouldn't need to worry about experiencing pain. The only time your would probably experience pain is from peritonitis, which is like an infection,  which you can get if you accidently touch your exit site. The best way to prevent this is simply being sanitary at all times, cleaning your would regularly and always having completely sanitary hands while setting up your dialysis machine. I had switched from PD to haemodialysis. If you don't know what that is, in simple terms it is basically blood dialysis (dialysis done using your blood).  

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Haemodialysis also involves a surgery to have a fistula or catheter, except you're awake for it (you don't see anything don't worry). Honestly it's not bad at all, unless you get queasy easily. In simple terms, a fistula is when two blood vessels are connected together to create a stronger flow of blood and a long lasting access point for dialysis. They use anaesthetic so you can't feel a thing, except maybe a slight twinge sensation. But to be honest the worst thing about it is the nerves and the sound of the clamps that they use to hold your blood vessels in place - and perhaps the smell of your flesh being cauterised, yeah that wasn't pleasant at all. But other than that you could basically just lay back and relax.  The procedure will normally be done months before you start haemodialysis, for example I had the procedure in April 2023 and didn't start haemodialysis until October 2023. During this time, you will be told to strengthen your fistula. Now you might think this means heavy lifting to make your arm stronger, right? Nope. The nurses gave me a stress ball to squeeze which I thought was great. It is also important to note that you shouldn't do blood pressure on that arm or a blood test unless it is a specially trained nurse.  Now, a haemodialysis catheter is different. It is normally threaded into a blood vessel in your neck or upper chest, to your heart. I don't know much about dialysis catheters or the way they do dialysis because I never had one, so​ if you want to know more, it is probably better to ask a medical professional. 

 Haemodialysis works similarly to peritoneal dialysis in that both clean waste from your blood, but it’s a bit more hands-on. For haemodialysis, they use a big machine and some needles, whereas peritoneal dialysis is more about having the fluid in your belly do the work. The machine used for haemodialysis is much bigger, and it’s done in a medical setting, not at home. The way this type of dialysis is performed is very different.  There are two needles that are inserted into your fistula, maybe an inch apart . One of these needles take the blood from your arm, puts it through the machine, through a dialyzer (which is like a big filter and an artificial kidney) and then back up through the other needle line and  back into your body. This process can last 3-5 hours and can be 3 or more times a week. Something I noticed was that the blood coming back into my body always looked a bit brighter than the blood leaving. It was kinda cool to see how the process worked!

I suppose this form of dialysis sometimes can be painful, it just depends how well you deal with needles. I admit, the needles are much thicker and it can feel uncomfortable, but as time goes on it does get easier. I found the most annoying part about it was not being able to move your fistula arm the entire time. To keep myself company I listened to music or read. Or sometimes I'd even just lay my head back and relax.  ​​

When you reach the point where dialysis becomes necessary, you’re usually given a choice between treatment options (at least, I was). I opted for peritoneal dialysis to start with. The reason? I was in college at the time and still wanted to maintain some normalcy in my social life. As a teenager, I didn't want to miss out on things like hanging out with friends or attending college because I had to spend hours on haemodialysis. But, like anything, it came with its own set of challenges. Peritoneal dialysis did affect my social life in ways I hadn’t expected. I ended up missing some nights out, parties, and sleepovers at friends’ houses.

That being said, my doctors and nurses were really understanding. They would give me the occasional “night off” if I had plans or just needed a break to feel like a normal teenager. It meant a lot to me, and I’m really grateful they were flexible. So, here’s an important takeaway: If you’re on dialysis and you’ve got plans that run late or you just need a little time for yourself, don’t be afraid to ask your medical team. More often than not, they’ll be willing to work with you so you can still enjoy life, although it is different for every doctor so don't take my word for it. 

Now, back to my point. Both peritoneal dialysis and haemodialysis have their pros and cons. The key is finding what works best for you—what fits your lifestyle, your priorities, and what you’re comfortable with. There’s no one-size-fits-all, so it’s all about making the right choice for your life. When it comes to choosing between peritoneal dialysis and haemodialysis, there are a few things to consider. Both have their upsides and challenges, so it really comes down to what works best for you and your lifestyle.

Peritoneal Dialysis

Pros:

  • Home Comfort: One of the biggest advantages is that you can do it at home, so it offers more flexibility and comfort. You don't have to spend hours at a clinic, which can be a huge relief.

  • Continuous Dialysis: Peritoneal dialysis works continuously, which can be gentler on the body. It’s less disruptive for your day-to-day routine

  • You can tailor when you do dialysis for you. If you prefer to do stuff during the day you can do your PD at night and vice versa.

Cons:

  • Surgery Required: You’ll need a catheter inserted, which involves surgery. While the procedure is common, it’s still something to be aware of.

  • Risk of Infection: There’s a risk of peritonitis, an infection of the abdominal cavity. It's important to be careful with hygiene, but thankfully, it can be managed if caught early.

Haemodialysis

Pros:

  • Effective for Severe Cases: Haemodialysis is typically more effective for people with severely reduced kidney function, as it’s a more intense form of dialysis.

  • Fewer Sessions: You generally need fewer sessions a week compared to peritoneal dialysis, which can be a plus if you’re looking for something that requires less frequent treatment.

Cons:

  • Clinic Visits: Haemodialysis usually requires you to visit a hospital or dialysis centre for each session, which can feel like a bit of a time commitment.

  • Possible Complications: Some people experience complications like low blood pressure or infections, especially from the needles or the process itself.

  • It can affect your personal life and what you do during the day. You have to plan around it. 

So, now that we’ve talked about dialysis options, let’s dive into something else that many people with kidney failure consider—kidney transplants. While dialysis can be a lifesaver and a way to keep things going, a transplant offers the chance to get back to a more “normal” life. It’s definitely not the only option, but for many, it can be the long-term solution they’re hoping for. Let’s take a look at what a kidney transplant involves and why it’s often seen as the next step after dialysis.​ In the end, choosing between the two depends on your lifestyle, the severity of your kidney function, and how you feel about the treatment options. It’s always helpful to talk with your doctor to weigh the pros and cons and find the best fit for you.

My Surgery

The surgery went really well, and I remember the feeling of sheer relief when I found out that my kidney function had improved so much. I went from having almost no kidney function at all to actually having 117% function in the transplanted kidney. It was honestly a huge surprise—not just for me, but for the nurses too. They were amazed at how quickly I recovered. Apparently, most patients are thrilled if their kidney function reaches 50% after a transplant, so the fact that mine was doing so well—and even handling the work of both kidneys—was pretty remarkable!

It wasn’t just the kidney that was recovering so well, either. Once the anaesthesia wore off completely, I felt this sudden surge of energy that I hadn’t had in years. It was strange, in the best possible way, to feel so... alive again. And something else I noticed was a shift in my mood. I felt this deep, lasting sense of happiness. It was like I had finally found a reason to be hopeful and positive again. I hadn’t realized how much I’d missed that feeling until it came rushing back.

The hospital staff made sure I had a “pain pump,” which allowed me to control my own pain relief after the surgery. But here’s the thing—I didn’t really need it. I wasn’t in pain from the surgery at all, which was a huge relief. The only discomfort I experienced was from my urinary catheter, which was necessary for draining my bladder at first. Sometimes, it wasn’t draining quite right, and that caused a bit of discomfort. But the nurses were so helpful—they showed me how to adjust the drain line so it wasn't so uncomfortable, which definitely made a big difference.

There was also the drain bag, which was another source of mild discomfort. The drain was inserted into the side of my abdomen, into the transplanted kidney, to collect any fluids or "icky" bits while my body adjusted. It was a bit awkward at times, especially when I accidentally leaned on the drain bag, but honestly, I didn’t mind it too much. The discomfort was nothing compared to the huge relief I felt knowing that everything was healing well.

There was one small, but significant, complication during the surgery. I didn’t know this at the time, but I still had a lot of PD (peritoneal dialysis) fluid in my body from previous treatments. My surgeon discovered it and had to drain it before continuing with the transplant. When I say a lot, I mean it—my weight dropped drastically from 53kg to 34.7kg in just a few hours. I was borderline anorexic, and I couldn’t believe the difference in such a short space of time. Thankfully, once that was taken care of, everything went smoothly.

The best part? Even with those little discomforts, I was told that everything looked fantastic, and it made my discharge from the hospital happen much quicker. The doctors were so pleased because they could see the amount of urine I was producing, and there was no unusual drainage in the drain bag. That was great news! It felt like all the hard work and patience leading up to the transplant had paid off, and my new kidney was doing exactly what it was meant to do.

In the end, my recovery went much smoother than I expected. I didn’t experience the pain that some people do after surgery, but I know that everyone’s experience is different, and it’s totally normal for others to feel more discomfort. What really mattered was that I felt better in so many ways—physically, emotionally, and mentally. And for me, that made every moment of the process worth it.

 

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When your kidneys aren’t working as they should, a kidney transplant can offer a chance at a new lease on life. It’s a treatment that can restore kidney function and improve your overall health, giving you more freedom and the potential to feel better in the long run. Of course, the process of getting a transplant involves a few important steps, and it's not always a quick or simple fix. But for many, it’s the opportunity to live a fuller, healthier life. I'll explain what kidney transplants are, how they work, and what you need to know about this life-changing procedure.

What is a kidney transplant?

A kidney transplant is a surgical procedure where a healthy kidney from a donor is placed into the body of someone whose kidneys are no longer functioning properly. The new kidney takes over the job of filtering waste and excess fluids from the blood, a task that the kidneys would normally do. This procedure is often recommended for people with end-stage kidney disease, where other treatments like dialysis are no longer enough to keep the kidneys working.

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Transplant List

I’ve touched on the kidney transplant process before, but now I want to dive into what the actual transplant involves. When it comes to receiving a kidney, there are two main ways you can get one: through a living donor, which can either be someone you know or an anonymous donor. When you’re on the waiting list, there are two main ways you can receive a kidney transplant: through a living donor or a deceased donor.

When it comes to getting a kidney transplant in the UK, the first thing you’ll need to do is get on the organ donor list. This is managed by the NHS Organ Donation and Transplantation Service. They’re the ones who work behind the scenes to match available kidneys from donors with people who need a transplant. It’s all part of making sure the process runs smoothly!

​So, if you're wondering how to get on the kidney donor list, here's the process: not everyone who needs a kidney will be eligible for a transplant right away. First, healthcare professionals will check things like your overall health, the stage of your kidney disease, and whether you're healthy enough to handle a transplant. They’ll usually do things like blood tests, imaging, and a few other checks to make sure you're in the best condition possible for the surgery. Once you pass the assessment, you’ll be added to the kidney transplant list! But it’s important to keep in mind that getting on the list doesn’t mean you’ll get a kidney right away. There are a few factors that can affect how long it takes, so it can take some time before you're matched with a donor. Patience is key during this part of the process.​

What affects your wait time?

When it comes to how long you'll have to wait for a kidney, there are a few factors that come into play:

  • Blood Type: Just like with any organ donation, your blood type needs to match the donor’s. If you have a rarer blood type, it might take a bit longer to find a match. The NHS works hard to make sure the matching process is fair and efficient.

  • Tissue Typing: The NHS also looks at your tissue type and specific markers in your immune system called human leukocyte antigens (HLAs). The better the match, the more likely your body is to accept the kidney.

  • Age and Health: Your age and overall health are considered, too. If you're younger and in better health, you might be prioritised because your body may handle the transplant better. If you’re older or have other health concerns, this could affect your position on the list.

  • Location: In the UK, kidneys are usually offered to people in the same general area to reduce the time spent transporting the organ. So, if you’re closer to the donor, you might have a quicker chance at a transplant.

  • Time on the List: The longer you’ve been on the list, the more likely you are to be prioritised. If your kidney function has declined significantly, your name might be moved higher on the list to reflect the urgency of your need.

  • Priority Status: Your medical condition plays a role too. If your kidney function is critically low or you're on dialysis, you could be moved up the list, depending on how urgent your situation is. Your healthcare team will help make sure you’re prioritised based on your specific needs.

So, a lot of different things influence your wait time, but the NHS works to make sure everyone gets the best chance for a transplant.

What happens once you're on the list?

Once you're on the transplant list, it’s really a waiting game. When a kidney becomes available, NHS staff will look at how well it matches with people on the list. They’ll consider things like your blood type, tissue typing, your medical condition, and the donor’s age and kidney function. It’s all about finding the best match for you.

If they find a match, the transplant centre will contact you as soon as possible to let you know. You’ll need to head in quickly for the transplant, so it’s super important to keep your contact details up to date with your transplant centre.

Now, while most kidney transplants come from deceased donors, there are also living kidney donations in the UK. This means someone like a family member, friend, or even a stranger could donate a kidney to you. If you have a living donor who’s a good match, your transplant could happen much sooner.

And if a loved one wants to donate but isn’t a match for you, there’s a program called paired kidney donation. In this case, donor-recipient pairs can swap kidneys, so your friend could donate to someone else, and you could receive a kidney from a different donor. It helps create more chances for everyone involved!

What happens if you've been waiting a long time?

Waiting for a kidney can be really tough—it can take months, or even years, to find the right match. During that time, your medical team will keep a close eye on your kidney function and overall health to make sure you're in the best shape possible for the transplant when it finally comes. If your health starts to decline, your doctors might adjust your treatment plan to keep you as well as possible while you wait.

It’s definitely a long and sometimes draining wait, but remember, you’re not alone. Many people have been through the same thing and have come out the other side with a fresh start. Having the support of your family, friends and your medical team can make all the difference while you wait. You’ve got a community behind you!

The kidney transplant waiting list can definitely feel like a bit of a lottery, but rest assured, it’s all based on careful planning and matching systems that are designed to give you the best possible outcome. It can take time, but there are people working hard behind the scenes to make sure you get the right match when the time comes. It’s a long wait, but you’re not in it alone!

Live-Donor donation​​

Living kidney donation is when a healthy person, known as the donor, decides to give one of their kidneys to someone who needs it, the recipient. The amazing thing is that people can live perfectly healthy lives with just one kidney! After the donation, the donor will be closely followed up by the hospital or their GP to make sure they stay healthy and recover well. It's a huge act of kindness that can truly change someone's life.

Most people who choose to donate a kidney do so to help a family member or close friend. For example, a parent might want to give a kidney to their child, and this is called a directed donation. But it’s also possible to donate to a complete stranger, which is known as altruistic (or non-directed) donation. Before donating, there are a lot of tests to make sure the donor's kidney is the right blood and tissue match for the recipient. The medical team will also check that they're healthy enough to handle the surgery and that they have enough kidney function to live with just one kidney going forward. It's a big decision, but it can make a life-changing difference for someone in need.

What is a paired or pooled donation?​

If someone wants to donate their kidney to you, but their kidney isn't a good match for you, they can still help through something called paired or pooled donation. This is part of the National Living Donor Sharing Scheme. In this scheme, their kidney is given to someone who is a good match, and in return, their donor will give their kidney to you . It's a great way to make sure both people get a kidney, even if the match isn’t right at first! It’s an incredible way to create more opportunities for people in need of a kidney. It’s all about building connections and giving everyone the best possible chance at a fresh start.

Donating a kidney

If you’re reading this because someone is donating a kidney to you and you want to learn more about the process, or maybe you’re considering donating a kidney to someone you know, or even just curious about it—this is the place to find some helpful info. It’s a huge decision and act of kindness, and whether you’re involved directly or just want to understand the journey, there’s a lot to know. So let’s dive into the details!

If you're over 18 and in good health, you could be considered as a living kidney donor. There are a few tests to make sure you're healthy enough for the donation and that your kidney is a good match for the person receiving it. However, you won’t be eligible if you've had cancer, or if you have conditions like diabetes, heart disease, or issues with your kidneys. Donating a kidney is a huge decision, so it’s important to talk things over with your family, friends, and doctor. And remember, you can change your mind at any time, all the way up until the surgery.

How to find out if you can donate

If you decide to donate, there’s a thorough testing process to make sure that both you and the recipient are healthy enough for the surgery. The process can take a few months, but it’s designed to ensure that everyone is in the best possible condition for the donation.

The first step is to reach out to your local kidney transplant centre or perhaps ask a medical professional and let them know you're interested. You can find the contact details on the NHS Organ Donation website. Once you contact them, you'll be connected with a Living Donor Transplant Coordinator. They’ll have a chat with you about your reasons for wanting to donate and explain the whole assessment process.

What tests will you go through to donate a kidney?

The tests can vary from hospital to hospital, and some might be done in one go, while others may require separate visits. The testing process is split into two parts:

  • A questionnaire to check your general health and medical history.

  • Height, weight, and blood pressure measurements.

  • Blood tests to check your health and screen for illnesses or infections.

  • Blood group tests to see if you match the recipient.

  • Urine tests to check for kidney issues or infections.

  • An ECG (electrocardiogram) to ensure your heart is healthy.

You’ll get the results from each test, and if anything abnormal comes up, the team will talk you through it.

 If all tests from Phase One come back fine, you'll move on to Part Two. This part includes more specialized tests like:

  • A chest X-ray.

  • A CT or MRI scan of your kidneys.

  • A test to measure how well your kidneys are functioning.

  • Blood and tissue tests to check compatibility with the recipient, especially if you're donating through the National Living Donor Sharing Scheme.

You'll also meet with a kidney doctor and possibly a psychologist to make sure you're fully prepared for the donation, and you'll go over the surgery details with a transplant surgeon.

If everything checks out and your doctor and surgeon give the green light, you’ll meet with an independent assessor (trained by the Human Tissue Authority). This is to confirm:

  • You are who you say you are (you’ll need ID for proof).

  • You are choosing to donate freely, without any pressure.

  • You understand the process and what the surgery will involve.

How long does testing take?

It usually takes between 3 and 6 months to complete all the tests, but it could take longer if some need to be repeated or if extra tests are required or if any abnormalities come up. While this may seem like a long time, it’s all part of ensuring that both you and the recipient are as safe and prepared as possible for the donation.

Will I get paid for donating a kidney?

Noit’s illegal to pay for kidney donations in the UK. 

What happens if my request to donate is approved?

Once you’re approved, a date will be set for the operation. The timing will aim to work around both your and the recipient's needs.

During the surgery, you'll be given a general anaesthetic, and your kidney will be removed and transplanted into the recipient. If you're donating to a family member or friend, it will usually happen in the same hospital, but if it’s a non-directed donation or through the Living Donor Sharing Scheme, your kidney may go to someone else in the country.

Are there any risks to donating?

Like any surgery, kidney donation has some risks, but it’s a common procedure carried out by experienced teams. They'll talk you through the risks during your assessment, and you can ask any questions. If you have concerns at any point, don’t hesitate to reach out to your transplant team.

What happens after the operation?

You’ll stay in the hospital for a few days post-surgery, and they'll give you pain relief. You’ll be encouraged to get moving once you feel ready. When you leave the hospital, you'll need to rest at home for a few weeks—usually around 4 to 6 weeks before returning to work, depending on your job. After donating a kidney, you'll have annual check-ups with your GP or the hospital. People with one kidney have a slightly higher risk of developing high blood pressure or kidney issues, but your kidney team will monitor you closely to catch any problems early. Donating a kidney doesn’t affect your ability to have children, though you’ll need more regular health checks if you become pregnant. It's also important to stay healthy and avoid smoking, as that can speed up kidney function decline over time.

What happens if you're not suitable to donate?

If the doctors decide that donating a kidney might put your health at risk, they won’t approve you for the donation. They’ll explain their reasons clearly, but even if you're not a donor, you’ve still made a generous decision to go through the process.

If you can’t donate a kidney, there are still other ways to make a difference! You could consider donating blood, bone marrow, or platelets, which can save many lives. You could also sign up for the Organ Donor Register to show that you're open to donating your organs after you pass.

Another option is to fundraise for Kidney Care UK, which helps support kidney patients across the UK so that no one has to face kidney disease alone.

Donating a kidney is a life-changing gift, and even if you're not able to donate, there are so many other ways you can help people in need!

The surgery

When the time comes for your kidney transplant, it can feel like a huge moment in your journey—almost like a new beginning. The surgery itself usually takes a few hours and is done under general anaesthesia, meaning you'll be asleep throughout the procedure, so you won’t feel any pain. The surgeon will start by making a small incision in your lower abdomen, where the new kidney will be placed. If you still have your old kidneys, they usually won’t be removed unless there’s a specific medical reason. The new kidney is positioned in a spot that makes it easy to connect to your blood vessels and bladder.

Once in place, the surgeon will carefully connect the kidney to your blood vessels to start the flow of blood. Then, they'll attach the kidney to your bladder so it can begin producing urine, which is an important sign that the kidney is working. In the best-case scenario, the new kidney starts to work almost immediately, which is such a positive moment!

After the surgery, you’ll be moved to a recovery area where your medical team will monitor you closely as you wake up from anaesthesia. It’s normal to feel a bit groggy, and you might experience some pain at the incision site, but the team will manage that with pain relief. 

The first few days after the transplant will be spent in the hospital so your doctors and nurses can make sure everything is going well with your new kidney. They’ll be watching for signs that your kidney is functioning and making sure your body is adjusting to the transplant. Your doctors may run blood tests to see how well the kidney is working, and you might be on medications to help your body accept the new kidney and prevent rejection.

Once you're feeling stronger and everything is stable, you'll be able to go home. The recovery process will take some time—probably around 4 to 6 weeks, depending on how you're feeling—but you’ll gradually get back to your normal routine. During this time, your medical team will continue to keep a close eye on your health, helping you with any adjustments to your medications or lifestyle to make sure you’re feeling your best. The early recovery period is really important. Even though you might feel better right away, your new kidney will need time to settle in and function at its best. So, you’ll need to take it easy at first and follow your doctor’s instructions carefully.

While it can be a lot to process, just know that the transplant is a huge step forward. For many people, it’s a life-changing moment that brings back energy, freedom, and a sense of hope. It’s the start of a new chapter, and while recovery might take some time, you're not alone in this. Your medical team, family, and friends are all there to help you through it.

The Kidney Donation Procedure: What to Expect from a Donor’s Perspective

Deciding to donate a kidney is a big decision, one that comes with a lot of thought, but also a sense of incredible purpose. If you’ve decided to donate, whether to a loved one or a stranger, you’re about to take part in something truly life-changing. Here’s what you can expect during the process, from the surgery itself to your recovery.

The surgery is done under general anaesthesia, which means you’ll be asleep and won’t feel anything during the procedure. Once you're under, the surgeon will make an incision in your abdomen, typically on the side where your kidney is located. The goal is to carefully remove one of your kidneys—while leaving the other one behind to continue doing its job.

Once the kidney is removed, it’s carefully prepared to be transplanted into the recipient. The transplant surgery happens separately on their end, and while you're resting, your kidney will be on its way to give someone else the chance at a new life.

After the surgery, you'll wake up in a recovery area where your team will be keeping a close eye on you as you come out of anesthesia.

You’ll likely feel some soreness around your abdomen, especially where the incision was made, but don’t worry—your medical team will be there to make sure you're comfortable with pain relief.

In the days following your surgery, you’ll stay in the hospital so doctors and nurses can monitor how you’re recovering. They'll check on your kidney function and make sure you’re healing well. You might feel tired and groggy at first, but that’s normal as your body adjusts to the surgery. You'll also start walking around and moving more as soon as you're ready, which helps with the recovery process. The good news is, even though you're donating one kidney, you can live a perfectly healthy life with just one. Your remaining kidney will adapt and do the work of both. It’s truly remarkable how resilient the body is.

The first few weeks after surgery will be all about rest and recovery. You’ll want to take it easy, but within a few weeks, you’ll begin to feel stronger again. Most people are back to their usual activities in about 4 to 6 weeks, though it might take a bit longer depending on your job and lifestyle.

While it’s normal to feel a little nervous about the surgery at first, keep in mind that kidney donation is a very safe procedure, and it’s something that’s done every day by experienced medical teams. You’re in good hands, and the risks are low. Still, your medical team will go over everything with you beforehand, and you'll have plenty of time to ask any questions you have.

It’s natural to feel a mix of emotions before and after the surgery. Donating a kidney is a huge act of kindness, and it’s normal to feel proud of what you’re doing. But it’s also okay to feel nervous, scared, or even overwhelmed. What you’re doing is incredible, and it’s okay to acknowledge the emotional side of it, too.

During your recovery, it’s important to stay connected with your support network—family, friends, and your medical team. They’ll be there to help you through the ups and downs and to celebrate the beautiful impact you’re making on someone else's life. As you heal and adjust to life with one kidney, just know that you’ve given someone the chance at a better life. Whether it's a loved one or a stranger, you’ve made a profound difference, and that's something truly special. It’s a gift of hope, and the gratitude from the recipient will be something you’ll carry with you for a long time.

Post-transplant

My Post-Transplant Experience

After my transplant, I felt incredible—like a new lease on life. But, of course, there were some bumps along the way. One of the first challenges I encountered was numbness in my legs. Initially, both legs were affected, but after a few days, I started to regain feeling and movement in my left leg. Naturally, I asked the doctors about it, and they explained that sometimes during surgery, a nerve can get temporarily compressed. They reassured me that this was fairly common, and I was referred to physical therapy to help with the recovery process.

The PTs gave me exercises to help restore sensitivity, like using different objects to stimulate my legs. For example, they recommended gently touching my leg with both soft items, like a tissue, and sharp ones, like a pen. It was a bit of a strange experience, but it definitely helped me reconnect with the sensation in my leg. Since the numbness made it hard for me to walk, the PTs took me to some stairs just outside my ward to work on my balance and strength. There were moments when my leg would give out unexpectedly, and I'd lose my balance, sometimes even falling. It was tough, especially because my legs weren't strong enough to support me fully.

After I was discharged, I was referred to local physical therapists for home visits. The therapist I worked with was amazing. He gave me a set of exercises to help rebuild strength, like lying on my back and trying to lift my legs while keeping them straight. My right leg felt incredibly heavy at first, but over time, I started seeing progress. The challenges didn’t end there. Since I had trouble walking, I had to sleep downstairs for a while, rely on a wheelchair when going out, use crutches around the house, and even use a commode. It was tough and, honestly, embarrassing at times. But in a strange way, it pushed me to work harder, to stay motivated, and to build strength in my leg.

Fast forward two months, and I was walking again—upstairs, no less! I could finally sleep in my own bed again, which was a huge milestone. At first, I honestly wasn’t sure I’d ever walk again. But with persistence and dedication, I pushed through, started hitting the gym, and before I knew it, I was running again.

There was also the issue I had with food. I’ll be honest, I’m a bit of a picky eater, specifically when it comes to hospital food. I just couldn’t stomach the idea of eating it, so for the two and a half weeks I was in the hospital, I lived on cheese sandwiches for lunch and dinner every single day. As you can imagine, this wasn’t exactly the healthiest choice. In fact, when I left the hospital, I struggled to eat much at all because I hadn’t been eating properly during my stay. But slowly, I pushed myself to eat more each day after being discharged, and eventually, my normal appetite returned. I could start eating whatever I wanted again, and honestly, it felt like a huge relief.

At my first clinic appointment after leaving the hospital, I spoke with a dietician—mainly because I had lost a lot of weight during my time in the hospital. She gave me some great advice: eat fatty foods and don’t stress too much about trying to eat “perfectly healthy.” She encouraged me to eat as much as I wanted, which was music to my ears after spending four years on a kidney-friendly diet that restricted so many of the foods I loved. She also suggested supplement drinks to help me gain weight. It was a big shift, but a welcomed one.

It wasn’t just food that I struggled with, though. I also had to deal with drinking. I was told I needed to drink at least 4 liters a day to help my new kidney adjust to its role. After being on a strict fluid restriction of just 1.5 liters a day for almost four years, the idea of drinking that much felt impossible. Every time I went over my old fluid limit, I felt like I was drowning my body. But, little by little, I managed to work my way up to that 4-liter target in the following months. It was tough, but it felt good to be taking better care of my body in a way I hadn’t been able to for so long.

On top of learning to drink a normal amount, there was also the challenge of retraining my bladder. After years of not being able to urinate, I had to get used to that sensation again. My bladder had become incredibly weak during that time, so there were often accidents. This was another reason I needed to rely on a commode. It wasn’t easy, but it was a part of the recovery process, and gradually, my body started adjusting. It was frustrating at times, but I kept reminding myself that healing takes time, and every little step forward mattered.

After my kidney transplant, I started a new routine with medications to help prevent my body from rejecting the new kidney. These included steroids and immunosuppressants, which are essential for keeping the transplant successful. However, they also made me more susceptible to infections, so I had to be extra cautious. To minimize the risk of illness, I followed strict isolation protocols for three months. During this time, I avoided crowded, enclosed spaces to protect my health and ensure the success of the transplant. This period of isolation was essential for my recovery, as it allowed my body to adjust to the new kidney and the medications. While this isolation was challenging, it was a necessary step in my journey toward better health. With time, I gradually reintroduced myself to social settings, always mindful of the importance of protecting my health during the early stages of recovery.

Experiencing kidney rejection not once, but twice, was a challenging chapter in my transplant journey. The first episode occurred in May 2024, followed by another in October 2024. Receiving those calls was devastating, especially since there are often no symptoms to indicate rejection. I was overwhelmed with emotions—disappointment, hurt, anger, and sadness. I couldn't understand why this was happening.

 

During the first episode, I underwent a kidney biopsy to confirm the rejection. I was apprehensive, especially after hearing about the size of the needle. However, the procedure was manageable. The most discomforting part was the sting of the local anesthetic, and the most nerve-wracking moment was hearing the click of the needle collecting the kidney sample. The biopsy confirmed the rejection, and I began a 10-day treatment in the hospital to reverse it. As part of the treatment, a PICC line was placed into my arm. Initially, I was terrified, but once it was in place, it wasn't painful—just a bit sore. After completing the 10-day treatment, with a few "day releases" where I was able to spend the day at home while waiting to find out if I needed the infusion that night, my kidney function had almost returned to normal, just under 100%. Experiencing rejection was a setback, but it also reinforced the importance of regular monitoring and open communication with my healthcare team. Each challenge became an opportunity to learn more about my body and the transplant process, strengthening my resolve to continue on the path to recovery.

The second rejection was pretty similar to the first, but this time my kidney function had dropped significantly—down to about 20% from around 90%. I had another blood test, and surprisingly, the results were a bit better than the first one. This gave the doctors reason to think the rejection might not be as severe and showed an improvement in kidney function by about 15% in just a few days. It made them wonder if I needed a biopsy, but they decided to go ahead with it anyway. Unfortunately, just like the first time, it had rejected. I was heartbroken and started questioning what I was doing wrong. I felt like I was following all the instructions, but still couldn’t understand what had happened.

This left me feeling really low and anxious. My consultant had to ask if I was taking my medication, which, while tough to hear, I knew he was just doing his job. He had to advocate for me to receive the treatment again, even though it’s usually not recommended to repeat it because of the potential risks. Thankfully, he was able to get approval, so I had the PICC line inserted once more. This time, I only needed 2 days out of the full 10-day treatment since my kidney function started improving so quickly. Still, I stayed the full 10 days to monitor for any potential side effects.

It’s been a year and two months since my transplant, and I’ve never been happier. There’s still a bit of worry in the back of my mind, wondering "what will go wrong next?" but I try to stay positive and focus on the good. I think about how lucky I am to still have my kidney despite the setbacks

 

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What happens post-transplant?

After a kidney transplant, there are a few things to expect as you start your recovery journey. It’s a mix of getting back to normal, staying on top of your health, and adjusting emotionally, but with the right support, you can make it through!

1. The First Few Days (Hospital Stay)

  • Hospital Time: You’ll likely stay in the hospital for about 5 to 7 days, maybe a little longer, depending on how your body’s adjusting.

  • Monitoring: The doctors and nurses will keep a close eye on your kidney function, blood pressure, and overall health during this time to catch any issues early.

  • Pain Management: It’s normal to feel some discomfort around the transplant site, but don’t worry — the medical team will help you manage that.

2. Medications

  • Immunosuppressants: You’ll need to take medications to make sure your immune system doesn’t attack the new kidney. This will be part of your daily routine for life, and the goal is to find the right balance so your body accepts the kidney without risking other health issues.

  • Other Medications: You might also be prescribed meds to help with blood pressure, cholesterol, or infection prevention. The doctors will adjust these as needed based on blood tests and how you’re doing.

Once a kidney is transplanted, the recipient’s body will need to take medications (called immunosuppressants) to prevent their immune system from attacking the new kidney, as the body might recognize it as foreign. One of the most critical aspects of a kidney transplant is preventing your body from rejecting the new organ. Your immune system is naturally programmed to attack anything it sees as foreign, which could include the transplanted kidney. To prevent this, you’ll need to take immunosuppressant medications for the rest of your life. These drugs help calm your immune system and stop it from attacking the new kidney. While immunosuppressants are crucial for preventing rejection, they can also make you more vulnerable to infections and other health issues, so your medical team will closely monitor you in the months and years following the transplant. 

3. Regular Follow-Ups

  • Check-Ups: You’ll have a lot of follow-up appointments in the beginning to check how the kidney’s doing. These will include blood tests and other monitoring to catch any potential issues early, like rejection or infection.

  • Biopsies/Tests: Your doctors may also recommend biopsies or other tests to check for rejection, especially in the first few months.

In the UK, after a kidney transplant, regular check-ups are an essential part of ensuring the health of your new kidney and your overall well-being. These check-ups help catch any potential issues early, like kidney rejection or infections, and ensure your medications are working as they should. Here’s what you can typically expect when it comes to follow-up appointments: 

 

First Few Months: After your transplant, you'll have follow-up appointments more frequently, usually every 1 to 3 weeks. This allows your transplant team to closely monitor your recovery and kidney function.

Longer-Term: Once you’ve been stable for a while, the appointments may become less frequent — every 3 to 6 months, or as needed. However, if any issues arise, you may need to come in more often.

At each check-up, one of the most important parts of your appointment will be blood tests. These tests are crucial for checking your kidney function, electrolyte levels, and overall health. The results help doctors keep an eye out for any signs of rejection or infection, as well as to ensure that your medications are at the right levels. Blood pressure will also be monitored regularly, as high blood pressure is common after a transplant and can affect kidney health. Urine tests will also be used to assess how well your kidney is filtering waste from your body. In addition to these routine tests, your doctors will conduct a physical exam to ensure you are healing well and to check for any signs of complications around the transplant site.

Rejection is a potential risk after any kidney transplant, so your doctors will keep a close watch for any early warning signs. Common symptoms of rejection include pain or swelling around the transplant area, fever, decreased urine output, or general malaise. If your doctors suspect rejection, they may recommend a biopsy to take a small sample of kidney tissue for further examination. While biopsies aren’t done during every check-up, they may be necessary if your team believes there’s a risk of rejection or damage to the kidney.

Your immunosuppressant medications will be carefully managed during these visits. These medications are essential to prevent your body from rejecting the new kidney, but they need to be carefully balanced. Too much of these medications can suppress your immune system too much, making you vulnerable to infections. On the other hand, not enough medication could lead to rejection. Your doctors will regularly check the levels of these medications in your blood to ensure they are at the optimal levels for your health. They may adjust your doses based on the results of your blood tests or any changes in your overall health.

In addition to kidney care, your doctors will also monitor any other health conditions you may have, such as high blood pressure or diabetes, as these can impact kidney function. They will work closely with your GP and any other specialists involved in your care to manage these conditions effectively. You may also need certain vaccinations, as your immune system will be suppressed for some time, and your transplant team will guide you on the recommended vaccines to protect you from infections.

While the physical aspect of recovery is a primary focus, your emotional well-being is also an important part of post-transplant care. Adjusting to life after a transplant can bring emotional challenges, from dealing with the stress of recovery to the anxiety of long-term health concerns. Your transplant team will offer support, and you may be referred to mental health services or support groups to help manage any emotional difficulties you might face. Many transplant departments also offer counseling services to help patients navigate the psychological aspects of recovery.

In the UK, your GP plays a key role in your ongoing care as well. While your transplant team at the transplant centre will oversee your kidney-related care, your GP will continue to manage other aspects of your health, such as routine screenings, vaccinations, and general health check-ups. It’s important to maintain communication between your GP and your transplant team to ensure that all aspects of your health are being properly managed. If you ever feel unwell or have concerns about your kidney, you’ll have direct access to your transplant centre for advice and support.

Overall, regular check-ups are a crucial part of post-transplant care. They help ensure that your kidney is functioning well and allow for early intervention if complications arise. With a good routine of follow-up care and a supportive team around you, you’ll be better equipped to stay healthy and manage life after your kidney transplant.

4. Lifestyle Changes

  • Exercise: Light activity, like walking, is encouraged, but be sure to take it easy and avoid anything too strenuous for the first few months.

After a kidney transplant, exercise is an important part of the recovery process, but it’s essential to approach it cautiously in the first few months to allow your body to heal properly and avoid putting stress on your new kidney. In the initial stages of recovery, your focus should be on light, low-impact activities that help you regain strength, mobility, and stamina without overexerting yourself.

Right after the transplant, your body is going through significant healing. Surgery, the stress of the transplant process, and the medications you're taking can all leave you feeling fatigued and vulnerable. Your new kidney needs time to start functioning well, and your immune system is suppressed due to the immunosuppressant medications you’ll be on to prevent rejection of the transplant. This means you’re more susceptible to infections and injuries, so it's important not to push your body too hard too soon.

Light activity, such as walking, is highly encouraged because it helps you regain strength, improve circulation, and reduce the risk of complications like blood clots or muscle stiffness. Walking, for example, is a gentle exercise that can be easily adjusted to your energy levels and physical condition. It also helps keep your joints and muscles flexible, which is important after a period of inactivity, like staying in the hospital or resting at home during recovery.

5. Dealing with Rejection and Infections

  • Rejection: While most kidney transplants go well, there’s always a chance of rejection, especially early on. Watch out for signs like pain near the transplant area, fever, or changes in urine output, and let your team know if you notice anything unusual.

  • Infections: Since you’ll be on meds to suppress your immune system, you’ll be more prone to infections. It’s super important to wash your hands often and avoid being around people who are sick.

While kidney transplants are generally successful, rejection remains a possibility, particularly in the early stages after surgery. Rejection occurs when your body’s immune system mistakenly identifies the new kidney as a foreign object and tries to attack it. Your immune system naturally protects you from harmful pathogens, but after a transplant, it can sometimes overreact, attacking the transplanted organ. This is why transplant recipients must take immunosuppressant medications to help prevent rejection, but there’s still a small risk that rejection can occur, especially in the first few months.

Rejection is a natural response by your immune system, which is designed to protect you from infection or foreign substances. When a kidney is transplanted, your body may recognize it as something “foreign” and try to eliminate it. That’s why doctors prescribe immunosuppressant medications: to weaken your immune system’s response and help your body accept the new kidney. However, these medications don’t completely eliminate the risk of rejection.

There are two main types of kidney rejection:

Acute Rejection: This is the most common type and usually occurs within the first few months after a transplant. It’s often treatable with adjustments to your medications.

Chronic Rejection: This happens over a longer period, typically months or years, and may result in gradual loss of kidney function. Chronic rejection is more difficult to treat, but it can sometimes be slowed down with medication adjustments.

While rejection can sometimes be subtle (sometimes you may not get any), there are certain signs you should be aware of. It’s important to report any of the following symptoms to your transplant team as soon as possible:

  • Pain or tenderness near the transplant site: This can be one of the earliest warning signs of rejection. If you experience new or unusual pain around the area where the kidney was transplanted, it’s important to reach out to your healthcare team.

  • Fever: A mild fever can indicate that your body is fighting an infection, but a high or persistent fever can be a sign of rejection. Fever accompanied by other symptoms should be taken seriously.

  • Changes in urine output: A noticeable decrease in how much urine you produce, or changes in the color or consistency of your urine, can be a sign that your kidney is not functioning properly, which could indicate rejection.

  • Swelling or weight gain: Fluid retention, often in the legs or around the abdomen, can be another red flag. If your weight increases quickly or you notice unusual swelling, it’s important to notify your transplant team.

  • Fatigue or general feeling of illness: Feeling more tired than usual or unwell, especially if it’s not linked to a common cold or flu, could signal that something is wrong with your kidney.

If you notice any of these symptoms, it’s crucial to contact your transplant team right away. They may recommend blood tests, a kidney biopsy, or other tests to determine whether rejection is occurring. Early detection of rejection can make treatment more effective, and often adjustments in medication can help reverse acute rejection.

One of the challenges after a kidney transplant is managing the risk of infections. While the transplant itself is a huge step forward in your health, the medications required to keep your immune system from rejecting the new kidney make you more vulnerable to infections. These immunosuppressant drugs lower your body's ability to fight off bacteria, viruses, and fungi, which means even common illnesses can pose a greater risk.

Your immune system typically defends you against harmful microorganisms, but when you’re on immunosuppressant medications, this defense is weakened. While these drugs are necessary to prevent kidney rejection, they also make it harder for your body to fight infections. As a result, infections—especially those that would be minor in someone with a healthy immune system—can become more serious. In the first few months after a transplant, the risk of infection is highest, but even long-term transplant recipients need to be vigilant about infection prevention.

​By following these guidelines and staying in close contact with your transplant team, you can minimize the risk of rejection and infections, and enjoy the best possible outcome from your kidney transplant. Regular check-ups and being proactive about your health can make a big difference in your recovery and long-term success with your transplant.

6. Mental and Emotional Health

  • Emotional Adjustments: It’s totally normal to feel a mix of emotions after a transplant. You might feel happy, relieved, anxious, or even guilty. This can be a lot to process, so don’t hesitate to lean on your support system, whether that’s friends, family, or a professional to talk through how you’re feeling.

  • Support: Finding a support group or speaking to someone who understands what you’re going through can really help you stay positive and manage the emotional ups and downs.

7. Long-Term Care

  • Kidney Health: Over time, your new kidney may not work quite as well as it did right after the transplant, but many people can still live healthy lives with their new kidney for many years. You’ll have regular check-ins to monitor how it’s doing.

  • Ongoing Monitoring: Regular doctor visits and tests will continue to make sure everything’s going smoothly. You’ll also stay on top of medications and lifestyle habits to keep your kidney healthy.

The road after a kidney transplant can have its challenges, but with the right care, a good routine, and emotional support, you can definitely thrive. Stay positive, stick to your treatment plan, and take it one step at a time!

Mental Health and the Effects on the People Around You.

Living with kidney failure isn’t just tough on your body—it really takes a toll on your mind, too. We often focus on the physical side of things, but it’s so important to talk about how this kind of diagnosis can affect your mental health. For a lot of people, it can feel like you're facing a never-ending battle, with constant doctor visits, changes to your routine, and the stress of living with uncertainty.

One of the hardest parts? The loneliness that can creep in. Even when you're surrounded by people who care about you, it can still feel isolating. The day-to-day stuff—like managing meds, sticking to a strict diet, and maybe even doing dialysis—can be exhausting. And while people might understand in theory, it’s hard for them to really get how overwhelming it can be, especially if they haven’t gone through it themselves.

Depression and anxiety are common for many of us living with kidney failure. It’s normal to feel sad or anxious, especially with all the unknowns. Maybe you're waiting for a transplant, and that can be emotionally draining. The uncertainty of it all can sometimes feel like a weight you can't shake off. It's a lot, and it's okay to feel those things.

But here’s the thing: It’s important to remember that those feelings are completely valid. They don’t mean you're weak or that you're not handling things well. Mental health is just as important as physical health, and dealing with your emotions is part of the journey. It’s okay to have bad days and feel overwhelmed sometimes. It doesn’t make you any less strong or resilient—it’s just part of living with a chronic illness.

If you're struggling, leaning on a support system can really make a difference. Whether it's family, friends, or other people who know what you're going through, finding people who can relate can help you feel a little less alone. And talking to a therapist or counsellor who understands chronic illness can be so helpful for working through those tough moments.

At the end of the day, it’s okay not to have it all together. Kidney failure might change a lot about your life, but it doesn’t take away who you are. It’s all about finding ways to cope, taking care of your mind as much as your body, and knowing that you don’t have to face it by yourself.

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When I was a teenager, I already dealt with anxiety. But as I got older and life kept throwing things my way, I started facing other mental health struggles too, like depression and borderline PTSD. It wasn’t just the kidney failure that caused it—there were also some personal issues in my life that played a big part in it. But now, I'm going to focus on the mental health impact that kidney failure had on me.

When I was dealing with kidney failure, my mental health was one of the toughest things to handle. The things I saw while I was in the ICU and everything I went through really left me shaken. When I started on all the medications I had to take—12 pills (or so) a day at just 17—it felt like a lot. I’ve never been great at taking pills, so having to take that many, spread out throughout the day, felt exhausting. It got to the point where I just hated it. I didn’t want to feel so different from everyone else, and the meds were a constant reminder of how much things had changed. I admit, I stopped taking them. I just wanted to feel like a "normal" teenager again, even though I know now that it wasn’t the right thing to do.

It didn’t take long before I paid the price for that decision. In early 2020, I had my first seizure, which happened because I hadn’t been taking my blood pressure medication. I felt really embarrassed about it, but honestly, when your mental health isn’t in a good place, it’s hard to think straight. After that, I still kept skipping doses here and there, even hiding the pills. I was struggling with a lot, not just because of the kidney failure, but also some other personal stuff. My mental state wasn’t great, and I started thinking dark thoughts, feeling like I didn’t want to keep going. Fortunately, my uncle and aunt found the pills I had stashed, and they got me the help I needed. I ended up in the hospital for about 24 hours so they could keep an eye on me, and they tried to figure out why I was feeling so low. They referred me to a psychologist, and I also got a peer support worker who helped me open up. I was put on the waiting list for CAMHS (Child and Adolescent Mental Health Services), which was a step in the right direction.

But even after that, the seizures kept happening. It wasn’t because I wasn’t taking my meds—at least, that’s what my family thought, which is completely understandable. But it made me feel like no one believed me, and I got really frustrated. I remember thinking, “What’s the point? No one believes me anyway.” So, I started skipping my medication again, and looking back, I know that was the wrong way to deal with it, but that’s how I felt at the time.

In the summer of 2021, I decided to move back down south to be closer to my family. I felt guilty about the stress I put my uncle, aunt, and cousin through, and I thought they deserved a break. So, I moved in with my grandparents. I tried to take my meds properly, but the seizures kept coming. And again, I started thinking, “What’s the point?” I slipped up again and didn’t take my meds the right way. My doctor noticed, and my grandparents sat me down for a serious talk. After that, I really made an effort to stick to the plan. My grandad started sitting with me to make sure I took my pills properly, and he’d advocate for me during doctor’s appointments.

Eventually, the doctors started to question whether I was really taking them and if the meds were even working. I was referred to an endocrinologist, who tested my thyroid levels and found that the Levothyroxine I was taking wasn’t being absorbed properly, which was preventing the rest of my medications from working. This was rare, and at first, no one thought that could be the issue. But after more tests, I was prescribed to Liothyronine, which helped the Levothyroxine work properly, and that made all the other medications start working too. Finally, I was able to start the process for a transplant, and it felt like a huge weight had been lifted off my shoulders after months of feeling like I was being blamed for something out of my control.

During one of my hospital stays, I witnessed some really tough moments that affected my mental health. I spoke to a nurse about how I was feeling, and she helped me by prescribing an antidepressant, Sertraline. That really lifted my mood, and I can honestly say that I’m in a much better mental state now.

One person that helped with my mental health in the hospital scene was a youth worker while in the childs services. The hospital had a youth group, which really helped me to feel less lonely, being surrounded by people like me. One of the youth workers actually gave me my nickname, 'Saz' which then got lengthened to Sazzy. My counsellor at the hospital also helped hugely I went from an angry pessimist to a content optimist and went from an entirely anxiety-ridden girl whos talk sounded like a whisper, to a much more confident, happier and smile-ier version of myself. Of course, I still have some tough days, but overall, I’m a lot happier and I'm able to speak about the stuff that is on my mind and don't bottle up my emotions.

I didn't realise this then, but I really did have a village supporting me and I'm forever grateful for them. My family, my friends, the psychologist I used to see and the peer support worker, the youth worker and all the nurses and doctors. If any of those people happen to be reading, thank you.  Sometimes your emotions cloud your thoughts and don't realise how many people are there for you, even when it doesn't feel that way. You might feel lonely but you're never alone. 

So to anyone at a low point, just know that it does get better. All it takes is the small courageous step of speaking out, whether it is to a friend, family member of mentor. It does get better.

 

Below, I'll put a few links that might help if you're struggling with mental health.

  • Mind
    https://www.mind.org.uk/
    Provides a wealth of information on mental health conditions, how to manage mental health, and access to services for support.

  • Samaritans
     https://www.samaritans.org/
    A confidential helpline offering support to anyone in distress or facing a tough time, available 24/7. You can call 116 123 for free.

  • Rethink Mental Illness
    https://www.rethink.org/
    Offers support, advice, and information for those living with mental illness, as well as campaigns to improve services.

  • NHS Mental Health Services
    https://www.nhs.uk/mental-health/
    Provides guidance on various mental health conditions, available treatments, and how to get help in the UK.

  • The Mental Health Foundation
    https://www.mentalhealth.org.uk/
    Offers a wide range of resources and information on how to maintain mental well-being and cope with mental health challenges.

  • YoungMinds
    https://www.youngminds.org.uk/
    Focused on supporting young people’s mental health, offering guidance for both young people and their families.

  • Shout Crisis Text Line
    https://www.giveusashout.org/
    A free, confidential 24/7 text support service for anyone in crisis. Text "SHOUT" to 85258 for help.

  • BACP (British Association for Counselling & Psychotherapy)
    https://www.bacp.co.uk/
    Offers a directory to help you find a qualified therapist, along with helpful resources on therapy and mental health.

  • PAPYRUS (Prevention of Young Suicide)
    https://www.papyrus-uk.org/
    Provides support and advice for young people struggling with suicidal thoughts, as well as a helpline (HOPELINEUK) for immediate support.

  • Mental Health UK
    https://www.mentalhealth-uk.org/
    A charity focused on supporting individuals affected by mental health problems, offering guidance and practical support.

My Email and Advice Column is always available for you to contact as well.

Remember, you're not alone. 

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Kidney failure doesn’t just affect the patient; it affects everyone who loves them. The emotional and mental health struggles of family members can often be overlooked, but they’re just as important to address as the physical health of the patient. It’s a tough journey for everyone involved, but with the right support and open communication, families can manage the stress and emotional toll together. Being there for each other, seeking help when needed, and finding ways to cope with the ups and downs of kidney disease can make all the difference for both the patient and their family.

I spoke to my family about the ways my condition affected them and these are some of the things they said that they struggled with:

1. The Emotional Weight for Family Members

 There’s often a mix of fear, sadness, and confusion—especially because the future can feel so uncertain. You’re not just worried about your loved one’s health; you’re worried about everything that comes with it. Will they need dialysis? Will they need a transplant? The unknowns can be scary, and that emotional stress doesn’t just stay with the person who’s sick—it affects everyone close to them. Over time, watching your loved one deal with the physical and emotional toll of the disease can bring up a lot of feelings—grief, sadness, maybe even guilt. It’s like losing a little piece of the person they once were, and that can be really tough to process.

2. Caregiver Fatigue

If you're the one stepping into the role of caregiver, things can quickly get overwhelming. Being responsible for managing medications, keeping track of doctor’s appointments, and providing emotional and physical support can take up a lot of your time and energy. It can become a lot.  If you’re juggling all of this while trying to live your own life—whether that means working, or just managing your own mental health—it’s easy to feel drained. Caregiver burnout is real. You might feel exhausted, both physically and emotionally. It’s not uncommon for caregivers to struggle with feelings of anxiety or depression, but many just push through because they think their focus should always be on their loved one. But ignoring your own mental health can actually make it harder to be there for them in the long run.

3. Financial Strain and Extra Stress

There's also the financial strain kidney failure can put on a family. Between medical treatments, doctor visits, medications, and possibly even a transplant, the costs can pile up quickly. This might lead to family members having to take time off work (for example the isolation periods before and after a transplant). Which means they have to cut down on hours, or even quit their jobs to provide care. All of this creates extra pressure and stress, which only adds to the mental toll. The stress can lead to sleepless nights and constant worry, making it even harder to focus on anything else. The financial burden often goes hand-in-hand with the emotional burden, creating a tough cycle to break.

4. Long-Term Mental Health Struggles

The effects of living with kidney disease go on for years, and over time, the mental toll can get heavier. It’s not just about the physical strain of caregiving—it’s about the emotional weight of watching someone you love suffer, knowing there’s little you can do to change it. Anxiety, depression, and even PTSD can develop, particularly after a crisis or if there’s a significant health scare. The constant worry about the future, and the stress of managing everything else, can sometimes feel like too much.

FAT1 Gene Diagnosis

For many, the most common causes of kidney failure are diabetes and high blood pressure (hypertension), which can both damage the kidneys over time, leading to chronic kidney disease (CKD) and eventual kidney failure. However, for me, the path to a diagnosis was much more complicated. My kidneys themselves were not inherently damaged, but they stopped growing when I was around four or five years old. By the time I was diagnosed with Stage 3 kidney failure at age 16, I was living with kidneys the size of a four-year-old's. Doctors ran multiple DNA tests, considering various possible syndromes. It wasn’t until further testing at QMC that the previously identified Townes-Brocks Syndrome, which addressed my renal issues, was the FAT1 gene mutation. This discovery explained more of my condition, including the bilateral hearing loss I was born with. At the time, I was one of only 16 people in the world diagnosed with this mutation, and the only one in the UK—at least, that they knew of. Here, I’ll explain the role of the FAT1 gene, how someone may inherit the mutation, and what it does.

When we think about what makes our bodies work, we often focus on things like muscles, bones, or organs. But there’s something just as important happening on a much smaller scale—the way our cells interact with each other. One key player in this process is the FAT1 gene, a little set of instructions that tells our body how to create a protein crucial for keeping our cells together and communicating. It’s kind of like a glue that helps our cells stick to one another, while also helping them send important signals to keep everything running smoothly. In this piece, we’ll dive into why FAT1 is so important, how it helps our body function, and what can happen when things go wrong with this gene.

So, the FAT1 gene is basically a set of instructions in your body that tells it how to make a protein. This protein does a pretty important job: it helps cells stick together and talk to each other. Your body is made up of tons of tiny cells, and for everything to work properly, they need to stay connected and coordinate with each other. The FAT1 protein helps make sure the cells stay in place, like a glue that holds them together. It also lets them send signals back and forth, which helps with things like growth, repair, and making sure everything’s functioning smoothly. You’ll find FAT1 in places like the skin and nervous system, and it’s especially important during development—like when you’re growing and your tissues are forming. Even as you get older, it helps maintain your body’s function. Sometimes, if the FAT1 gene has changes or mutations, it can lead to some health issues, like certain cancers or developmental problems, because the cells might not stick together or communicate the way they should. So, to put it simply, the FAT1 gene is like the body’s instructions for making a protein that helps keep cells together and makes sure they’re talking to each other properly—both of which are pretty crucial for keeping everything running well!

Sometimes, a FAT1 gene mutation happens just by chance. It’s like a little mix-up when the gene is being copied as your cells divide. Normally, your body is great at copying things perfectly, but every now and then, a mistake slips through. That mistake is what leads to a mutation in the FAT1 gene, which can affect how it works.

Other times, someone might inherit a FAT1 gene mutation from their parents. This means one of their parents had the mutation, and they passed it down. So, they’re born with it. If someone gets two copies of the mutated FAT1 gene—one from each parent—it could lead to bigger issues, depending on the mutation. This is how I got it. 

Think of it like a recipe for a cake. If one parent gives you a slightly off recipe, it might not ruin the cake—just a small tweak, but still edible. But if both parents give you their own slightly off recipe, you might end up with a cake that’s not just a little strange, but seriously messed up. The same goes for the FAT1 gene mutation—if you inherit one mutated copy from each parent, it could cause bigger problems, depending on how those changes affect your body.

While some mutations happen randomly, there’s still a lot to learn about what else might cause them. Some scientists think things like environmental factors or lifestyle choices might play a role, but that’s something they’re still exploring.

So, in short, you can end up with a FAT1 gene mutation either through a random mistake in cell copying or by inheriting it from your parents. It’s usually just something that happens naturally, though!  That said, FAT1 mutations are pretty rare. They’re often seen in connection with things like head and neck cancers, some skin conditions, or even certain developmental disorders—but these are conditions that don’t affect a huge portion of the population.

A FAT1 gene mutation affecting the kidneys isn’t super common, but it can cause some issues, especially when it comes to how the kidneys develop and function. The FAT1 protein helps cells stick together and communicate, which is super important for organs like the kidneys. If there's a mutation in the gene, it can mess with that process, causing problems with how kidney cells work together or send signals to each other. This can affect how well the kidneys do their job, like filtering waste or maintaining fluid balance. 

This gene mutation isn’t very common, and not a lot of people know about it. Because of that, I’ve often felt like there’s not much information out there for those who might be going through similar experiences. That’s why I’m sharing my story and my diagnosis—I hope that by doing so, I can help at least one person find the answers they’ve been searching for. It took from 2019 to 2022 for me to finally have an answer and there maybe people that have been waiting longer for an answer, or perhaps there are new patients with yet to know of their diagnosis. If it can bring more awareness to this condition, or help someone get a confirmed diagnosis, then it’ll be worth it. I know how important it is to feel understood and supported, and I’m hoping my story can make a difference.

Here are some links to sites that can give you more information on this condition. 

  • PubMed – This is a database of scientific papers and research articles. You can search for “FAT1 gene mutations” to find studies related to this gene and its effects on various conditions.

       pubmed.ncbi.nlm.nih.gov

  • Genetics Home Reference (now part of MedlinePlus) – This site provides clear, accessible information on various genes and genetic conditions. Searching for “FAT1 gene” here will likely yield helpful information.

       medlineplus.gov/genetics

  • OMIM (Online Mendelian Inheritance in Man) – This is a comprehensive resource for genetic information. You can find detailed info on FAT1 and related genetic conditions here.

       omim.org

  • GeneCards – A gene database that includes detailed information on genes, including FAT1, and links to related research articles.

       genecards.org

  • National Institute of Health (NIH) – The NIH often publishes articles and research on specific genes and their impact on health. Their website can provide more detailed, up-to-date research.

       nih.gov

Dietary Requirements

When someone has kidney failure, especially in the later stages (also called end-stage renal disease), it’s super important to follow a special diet to help keep things under control. The right food choices can slow down the damage and reduce the risks of complications. I mentioned some stuff about this before but 

1. Protein

When you're on dialysis (whether it's haemodialysis or peritoneal dialysis), your body can lose some important nutrients, including protein. This happens because dialysis helps remove waste and excess fluid, but it can also wash out some of the good stuff your body needs to function properly. So, you might actually need more protein than a person with healthy kidneys to compensate for what's being lost during dialysis.

2. Fluids

Since your kidneys aren’t filtering fluids as well as they should, you might need to limit how much you drink and you might get put on a fluid restriction. This helps avoid swelling and high blood pressure. Depending on your stage of kidney failure, you might be advised to stay under 1-1.5 liters of fluid a day (this includes all drinks and even watery foods like soups or fruits).

3. Sodium (Salt)

Too much salt can make blood pressure go up and cause fluid build up. For kidney patients, it's best to limit sodium to  about 1 teaspoon of salt a day. That means cutting back on processed foods, canned goods, and takeaways, which are usually packed with salt. When cooking, try using herbs, spices, and fresh ingredients to give your meals flavour without the added salt!

4. Potassium

Potassium is important for the heart, but when your kidneys aren't working properly, it can build up in your blood, which is dangerous. High-potassium foods like bananas, oranges, potatoes, and tomatoes might need to be cut down or avoided. Your healthcare provider can help figure out your exact potassium needs, but generally, it’s about eating lower-potassium options such as apples, grapes, berries, cabbage, and carrots.

5. Phosphorus

Phosphorus can build up in your blood if your kidneys aren't working well, and this can affect your bones and heart. To keep it in check, you’ll likely need to limit foods that are high in phosphorus, like dairy (milk, cheese), nuts, seeds, and processed meats.  In some cases, your doctor might recommend phosphate binders, which help lower phosphorus levels.  Phosphate binders work by "binding" or attaching to the phosphorus in the food you eat so that it can't be absorbed into your blood. After they bind to the phosphorus, your body excretes it in your stool (poop) instead of letting it stay in your bloodstream. These medications need to be taken with meals to help manage the phosphorus from the food you're eating.

6. Calcium

Calcium is key for bone health, but in kidney failure, calcium levels can get completely out of whack. You might need to increase or decrease how much calcium you get, depending on your specific needs. Foods like dairy products, leafy greens, and calcium-fortified plant-based milks can help, but it’s important to balance them with phosphorus control.

7. Vitamins & Minerals

Since kidney failure can affect how your body absorbs certain nutrients, you might need extra iron, vitamin D, B12, and folic acid, especially if you’re on dialysis. Sometimes doctors will recommend supplements or specific treatments, like iron supplements for anemia, which is common in kidney disease.

8. Carbs & Fats

Managing your blood sugar is important, especially if you have diabetes or are at risk. Focus on eating low glycemic index foods (those that don’t spike your blood sugar quickly) like whole grains and vegetables.

Healthy fats are your friend! Things like olive oil, avocado, and fatty fish (like salmon) provide good fats that are good for your heart, while you’ll want to cut back on unhealthy fats like trans fats and saturated fats.

9. For Dialysis Patients: Special Considerations

If you’re on dialysis, you’ll likely need to make some extra adjustments to your diet. Dialysis can remove important nutrients, so you might need to increase your intake of things like calories, protein, and specific minerals to replace what’s lost. But if you’re not on dialysis yet, the focus will be more on restricting certain foods to prevent your kidneys from getting overloaded.

Some Helpful Tips:

  • Read food labels carefully: Watch out for hidden sodium, potassium, and phosphorus in packaged foods.

  • Cook from scratch when you can: It gives you more control over what goes into your meals.

  • Avoid processed and salty foods: These can sneak in a lot of sodium that can be hard on your kidneys.

Everyone’s kidney journey is different, so the exact diet will depend on the stage of your kidney disease, whether you're on dialysis, and your overall health. It’s always a great idea to work closely with a renal dietitian who can help tailor your diet to your needs. 

I know just how difficult it is to find meals that can accommodate the kidney-friendly diet, finding stuff can't eat, finding stuff that you like that you can eat. It can feel impossible, finding meals that are appropriate. As someone who enjoys to cook and hopes to one day have a job in the hospitality industry, I want to find new, delicious and alternative meals for people following this diet. I'll be keeping track from the very start (college) of my career to the end, wherever and whatever that may be on my blog and so I'll be finding new recipes to accommodate this diet and post them on here. 

One Last Message

Sitting here now, as I’m typing this, I am a year and two months post-surgery, and I have never been happier. When I look back at the journey I’ve been through, from the initial shock of my diagnosis to the long, difficult days of managing kidney failure, I’m overwhelmed with gratitude. I know that for many of you, just being here on this page means you might be facing the uncertainty, the fear, or the confusion that comes with kidney failure. Whether you’ve just been diagnosed or are preparing for surgery, I want to offer you some comfort and a sense of hope. I know how hard it can be, and it can feel isolating at times. But you are not alone in this.

Throughout my journey, I've learned so much about myself, my body, and how incredibly resilient the human spirit can be. I’ve shared the intricate anatomy of the kidneys and how their failure can impact the body in such profound ways. I’ve written about the different treatments available, the gruelling process of dialysis,  the aspect of dietary restrictions and fluid management and the ultimate hope that comes with a transplant. If you're navigating these challenges, I want you to know that it's okay to feel overwhelmed. It's okay to ask questions and seek guidance. These become an essential part of life, a constant balancing act, but with time, they become more manageable. And while it may seem like an overwhelming list of dos and don’ts at first, it eventually becomes a new normal, one that you adjust to with patience and perseverance.

One of the things that stands out the most in my experience is the impact kidney failure has not only on the individual but also on the people around you. The emotional and mental toll it takes on your loved ones is often underestimated, and I want to shed light on this part of the journey. I’ve shared some of my own struggles with mental health—how the stress, the uncertainty, and the ups and downs of managing a chronic illness can take a toll on your emotional well-being. It’s so important to acknowledge that taking care of your mind is just as essential as taking care of your body.

When it comes to post-transplant life, there is a new world to navigate. The recovery is often slower than you might expect, but the relief and joy of having a second chance at life are beyond words. It’s not without challenges, but the small victories make every moment worth it.

But above all, this blog has been a space for me to share my personal experience with kidney failure, from the fear of the unknown to the triumph of recovery, and everything in between. I want anyone going through this, or supporting a loved one, to find comfort in the words here, knowing that there is light at the end of the tunnel. My story is just one example, but it is a testament to what’s possible with determination, support, and hope. If I can make it through, so can you.

So, if you’re reading this, wherever you are on your journey—whether you’re just beginning to process your diagnosis, preparing for surgery, or adjusting to life post-transplant—know that you are strong. The road may be long and filled with challenges, but each step is a step toward better days. Keep moving forward, hold on to hope, and remember that there are people who understand, who care, and who are here to support you. We are in this together.

If you're dealing with kidney issues, whether you're newly diagnosed or have been living with it for a while, I want you to know that you're not alone. This advice column is a space where you can ask questions, share your concerns, or just reach out for some guidance. While I'm not a medical professional, I’m happy to share what I’ve learned from my own journey living with kidney failure and being a transplant patient. Everyone’s experience is unique, but sometimes hearing from someone who’s walked a similar path can make all the difference. So don’t hesitate to ask anything—I’ll do my best to offer advice, insights, or just some comforting words when you need them. We’re in this together!

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