Why Are We Teaching Patients How to Be Sick Instead of How to Be Well?
Maddy Warren has skydived, run the London Marathon and completed 100 miles on horseback across Wales. She’s also been on dialysis continually for 28 years since she was 14.
Maddy has become one of the most recognizable kidney patient advocates in the UK and is known online as the @queenofdialysis. As well as completing physical challenges, she is also an HR consultant, TEDx speaker, passionate campaigner and advocate, all while managing a treatment that takes up the better part of her nights.
In this Constellation Conversation, Maddy speaks to Michelle with rare candour about what the renal community gets right, what it gets wrong, and why the gap between the two so often comes down to something deceptively simple: treating every patient as an individual.
From the power of peer support and the urgent case for home dialysis, to the psychological burden that is rarely addressed and the exercise prescription she believes should sit alongside every treatment plan, this is a conversation that challenges, inspires, and asks more of the system.
If you had to sum up who Maddy Warren is beyond the dialysis machine, what would you say?
I’ll caveat my response, because I’ve dialyzed since I was 14, so I have been shaped by it. I don’t know who else I would have become, because that has just been front and centre. However, I think if I was just to say, who am I? I am very adventurous, very ambitious, very positive, happy, love having fun, like to find the best in every situation kind of person.
My name is Maddy. Everyone says I am mad and that I was named well.
My parents, raised us to have a go at stuff, have fun, have adventures. My dad would take me skiing in his backpack when I was 3!
My mum and dad never said, “now you’re sick we have to wrap you up in cotton wool.” They said, “you’ve got to crack on and live your life. We will facilitate everything we can.” I was lucky. Not everyone has those circumstances or the financial means to access those opportunities. There are aspects of my story that were enabled because of my circumstances or just pure luck, as well as many efforts that I have made to drive my life forward. And I try to never forget that.
I do get held up as a role model on dialysis, but not everyone starts with the solid supporting foundation that I benefited from. I had a wonderful childhood, and very supportive family. And then this diagnosis came along. I try and remind people that if you have made it through kidney failure and you’re on dialysis, that you are so strong and resilient. That’s helped shape my attitude as well.
I want to experience everything that life has to offer. And I’m willing to push the boundaries of what’s possible very hard even when it’s complicated. That’s where the dialysis inevitably comes in. It taught me from a very young age that you can’t wait around to have experiences. I had a second chance because dialysis keeps me alive, but it also made me even more determined not to let kidney failure take away any opportunities. It has no doubt pushed me to do adventurous and exciting things that I might never have pursued if I hadn’t been on dialysis.
My experience has been enormously driven and shaped by doing dialysis at home. And in my opinion, I probably wouldn’t have survived this long if I hadn’t been dialyzing at home. Home dialyzing has been so much better for me because I’m doing so a lot more treatment, more hours running slowly with fewer long gaps. It gives me a far better quality of life whilst being much gentler on my body.
You were diagnosed with FSGS at 13 and began dialysis at 14 after 18 months of hospitalisations and failed treatments. Looking back, how did the way your clinical team communicated your diagnosis shape your mindset and what do you wish had been done differently?
I wouldn’t wish this on a child or anyone, but being in pediatric care was the best of the best. I’ve always been under Guy’s Hospital in London, who I am just eternally grateful to.
My consultant and the nurses spent so much time with us as a family, educating us and explaining everything. Every question was answered. In pediatrics they had the luxury of a smaller patient to staff ratio compared to adult units, which helps an awful lot.
We had a sense of community on the children’s ward where there were other families and parents going through similar things. I know my mum and dad spent a lot of time chatting to other parents and the teenagers made friends with each other. We had the feeling that we were not in it alone. That’s why I’m so passionate about peer support and community and why I share so much of my life online, because I know how important that is. You’ve got to be able to speak to and see other people going through it or you just don’t believe you’ll ever make it.
I went from being a completely healthy teenager to being entirely in hospital and trying really aggressive treatments like chemotherapy, steroids, and immunosuppressant drugs. None of it worked, and a lot of it made me worse.
It became quite apparent the FSGS was never going to respond to anything. Within an 18-month period, I lost my kidneys completely. My consultant started preparing us for the fact that it didn’t look like it was going to improve and therefore dialysis was going to be the next step, with a long-term plan to try a live donor transplant. I chose to go on dialysis first because finishing my education without further disruption was extremely important to me and I also needed to rebuild my strength.
The time, information and education provided were invaluable. They were turning us into an expert patient family, and I have become beyond expert in my own body, my own health. I was never treated as “you’re the patient, we’re telling you what to do, sit down, be quiet.” I’ve always been able to ask questions and challenge decisions. I’ve been able to say, “hang on a minute, we need to backtrack here, are we really covering all the bases?” The team gave me huge confidence that my health is my responsibility and they’re my partners in that care.
I don’t know what experience I would have had if I was diagnosed in the adult community. My care is still fabulous. I have the best home dialysis consultant and care team, but I did already come to them with a lot of confidence and expertise.
I find that a lot of healthcare is very hierarchical. You could be talked down to; you could inadvertently be made to feel stupid because you have no idea what anyone is talking about. You can sometimes feel forced into making decisions when you just don’t understand what’s being discussed. I’m horrified when I meet people on dialysis who don’t know why they’re on a fluid restriction, because no one has ever explained it to them. They don’t know why it’s important, that it’s crucial to protecting yourself on dialysis.
In terms of what we could be doing better, particularly in adult care, is finding ways to do more education and meet people where they’re at. Everyone learns differently. They’ve just had this terrible diagnosis. They are not in a position to receive complicated information, but that’s what’s happening. They’re being bombarded all the time. And you can completely lose people in that scenario.
Whatever we can do to educate people at a pace and in a language that they can understand makes the biggest difference to how well they engage with their care; follow the guidance, stick to their fluids, take their meds and but also learn how to have the best possible quality of life in a safe way. When people don’t understand enough it can lead to a disaster. So much of kidney healthcare can be influenced by the patient. It’s the diet, it’s the fluid, it’s turning up for your treatment. If we’re not engaged in understanding why all that’s important, we’re not going to do it.
I see the healthcare system getting crushed under the weight of the number of patients. There’s no time, there’s not enough resource. Anything that can be done to create supportive communities of peers, and time for people to come and ask questions and get access to the right education in a way they can understand is so valuable.
We can do amazing things; transplant complicated people, improve the quality of donor organs, we can dialyze people for years. But then we can’t explain to someone why they’re on a fluid restriction. People have a transplant but can lose that kidney because their mental health isn’t being supported and they stop taking their meds. What’s the point in all that amazing transplant technology when it risks failure because we’re missing some of the basic stuff?
Your plan at 19 was to receive a kidney transplant from your father, recover, and then take up your place at Cambridge. However, the transplant failed and you found yourself having a fistula created. How did you cope with that sudden pivot, and what role did your renal team play in helping you rebuild a plan?
My team started to play that role before it even happened because we knew I was a high-risk transplant case. They were really honest.
The team had cared for me for since I was 13 through kidney failure onto peritoneal dialysis (PD), and PD for me was a really positive experience. I got through my education. I won my university place. All of that, while still on dialysis. My doctors already knew I would want all the information, the statistics, the risk. They told us there was at least a 70% risk that my FSGS would recur. That 70% number was made very clear. I think as an adult, I might have said to my dad that I didn’t want him to go through it. But being my dad, I’m sure he would have done it anyway.
I had huge trust in the team built up over the preceding years. They felt like friends and family to us. I had moved from pediatrics to adult care ahead of the surgery and they handled the transition brilliantly. My pediatric team came to my first appointments and introduced me to all the people at the adult clinic. But it was a very different experience being on an adult ward and I remember feeling a bit lost.
I’m not sure we did a lot of preparing for the worst, other than we were aware that this was a big gamble. And then unfortunately it was truly catastrophic. They transplanted and within 12 hours, the FSGS recurred. I think I probably blanked a lot of it out now. It happened. It’s done. That is how I have to function so I can keep moving forward with my life.
They started me on plasma exchange immediately, but that was a very new therapy at the time, and it was complicated. It’s hard because the team obviously wanted to throw everything they had at trying to get my FSGS into remission to rescue the kidney. But it reached the point where I didn’t think I could tolerate or even survive much more attempted treatment as the side effects I was experiencing were so risky. I said, “enough, we need to take this kidney out.” And that was my decision.
It had also been my choice to take my native kidneys out 5 years earlier. The 1st 18 months of my FSGS, had progressed very aggressively. I did have some function left, but there was no way it was ever going to go back up. I didn’t want to suffer all the way down to below 10% function. So, I made the decision to take my kidneys out and start on dialysis because we all knew that’s where it was going to end up.
Both times I made the choice and they respected the choice. That was huge. It gave me autonomy. In a weird way that helped me cope. Following the failed transplant, I decided I could rebuild my life back on dialysis. I knew it would be hemodialysis. I knew I’d need a fistula. I knew that was all to come.
I also knew there was no way I would ever go anywhere except home for dialysis. It wasn’t a difficult decision. Having done PD overnight for years I didn’t want to give up that freedom and overnight flexibility. I’ve always set myself ridiculous goals in my life, expecting my health to get me there. The dialysis needs to work for me. And I told everyone, “This is what I’m doing. You need to get me to university.” And we did.
Having a completely external life goal to strive towards helped enormously. The team said, “We’ll try to get you there.” They didn’t say I should give up on the idea or that it wouldn’t happen. No one ever said that to me.
I hate it when people are led to believe that once they’re on dialysis, they can’t do things anymore. I hear all sorts of misinformation like you can’t go on holiday, you can’t pursue a certain career, you can’t have pets or go to the gym. Dialysis for a lot of people (although I accept not all) doesn’t have to be anywhere near as restrictive as people often believe it is. We inadvertently teach people that they’re sick, they’re dependent. The system and culture of health provision is often teaching them how to be a sick person rather than how to be well on dialysis. Why would you do that to people?
Why do they need to lose their dreams as well as their health?
Around 95% of hemodialysis patients dialyze in hospital three times a week, which you describe as being very aggressive on the body. As a patient, how did you navigate the conversation with your clinical team about moving to nocturnal home hemodialysis and what barriers do you think stop more patients from getting there?
I was lucky because my hospital has always been very forward thinking and pioneering about home dialysis. I’d been on PD at home and that had been my “normal”. It was home dialysis from the start. Unlike many people who are having to fight for home hemodialysis or have never been offered it and have no idea that it’s even an option.
I was a young person, my whole life ahead of me, I was about to go into university education, I had all these career aspirations. There’s no way that sticking me on in-center dialysis was going to help. Three times a week dialysis is nowhere near enough in my opinion. You don’t feel good. You feel exhausted.
The team were very efficient at training and transitioning people home. At the start, I wasn’t doing nocturnal. It wasn’t really a thing. But my consultant was very passionate about home dialysis and had been to Holland and learned all about nocturnal and thought it was the most amazing modality. He encouraged me very early on. I switched to nocturnal within the first two to three years of being on home hemodialysis.
For anyone who is in healthcare I would just say if it was your life and you knew all the available modalities of dialysis, what would you choose? Research shows that the majority of doctors or nurses would choose nocturnal home hemodialysis because it’s the gold standard for health outcomes and quality of life. Yet so few people are offered or encouraged to take it up. That is a real disconnect.
A lot of that is perhaps down to a level of bias. A sense that people can’t cope with it. There’s a lot of misinformation that flies around too. Questions of if it is safe… could your needles fall out or what happens if the machine alarms? All of that is down to training and confidence. I’ve also heard people state as fact things, like you need an entirely separate room or to turn your house into a hospital. You don’t, but they are some of the barriers we’re fighting against. There’s no universal specific guidance that care providers can access on how to run an effective nocturnal program. That’s something I’m passionate about trying to help design in the UK.
That’s before you even get to the patient barriers, which are typically fear, concerns over safety, can I put needles in? Will I be able to sleep? Is the machine noisy? What about my partner or my kids? There are a lot of psychological barriers that require coaching, peer support, education, the ability to go and talk to people who are doing it; see their setups, see it in action, hear their stories that motivate and inspire people to believe there’s a better quality of life out there for them.
On nocturnal, I have no fluid restriction, no diet restrictions. I lose none of my working daytime or my evenings. I can work in a busy career and I’m fit enough to run marathons. That is very different to the vast majority of three times a week dialysis patients. And that’s because it’s basically giving me the equivalent of a functioning kidney without having the kidney and without any of the drugs and complications that a transplant can bring. I’m healthier, fitter and have less complications than many of my transplanted friends. It’s like a miracle treatment. Why are we not using this everywhere?
In the UK and around the world we see vast amounts of health inequality not just in renal care. We have incredible health care professionals working so hard under pressure, but even between units in the NHS there is still a postcode lottery.
There are units who are incredibly pro home therapies and will offer them as broadly as possible. They are the aspiration and the ones we should be learning from. There are stories of people going home who are visually impaired, older people at home doing PD independently. Young people with severe disabilities whose parents are dialyzing them at home. I’m not saying those are easy scenarios, but that just shows how many people can be suited to home. That’s not the norm though, often there seems to be cherry picking of patients who seem the easiest to train and set-up at home.
There are also people who are perceived to be too complex for home dialysis from a health point of view. The irony is a lot of common complications are from having three times a week dialysis because of what that does to the body.It’s a vicious cycle. The solution is often to do more dialysis gently and more often. To do that, you have to go home, but they’re being told they’re not well enough to go home. They are completely stuck. I think that happens a lot with people who are also managing things like diabetes, mobility challenges or heart issues.
In the UK, we have brilliant kidney patient support charities who specialize in things like advocacy and peer support. If you’re fighting for something and you’re not being given it at your hospital, they can help support you through those conversations. A lot of people don’t know that you can push back and discuss or question the medical decisions being made. People think “I’ve been told I cannot go on home dialysis, so I’ll never talk about it again.” It might be they were talking to someone who didn’t know the full picture or didn’t have specific training in home dialysis so couldn’t educate them.
For things to change, it must involve the multidisciplinary team. It has to be everyone’s responsibility, from nurses and doctors to physios, dieticians, pharmacists. Everyone needs to be on message about the benefits of home, with the basic information that patients need and where to send them to get more.
We need to empower the staff and the patients to create a two-way street of personalized care. I have seen stories on social media about hospitals trying to encourage home dialysis and promoting the benefits. But there’s a subset of patients who then believe; “They don’t want me in the hospital. They’re trying to save money. I’m just being left on my own.” So, it can backfire and of course it’s not right for everyone. But it’s incredibly frustrating when you know the patient has declined home because they haven’t got all the information.
We also need mechanisms for regularly checking in and revisiting what the patient might have said previously. People’s lives change and with new information or changed circumstances, an individual or family might make a different dialysis decision. I’ve been wrangling with this for over 20 years in advocacy, peer support conversations and education and I still do not know what the answer is. You sometimes feel you go one step forward and three steps back.
You’re a big advocate and call for greater equality of care for kidney patients. What does meaningful patient advocacy actually look like in the clinical setting and how can you foster it rather than unintentionally suppress it?
Your point about it being in the clinical setting is important because my involvement in advocacy has happened at many different levels. So, starting with government and healthcare policy where the kidney charities and advocates do amazing work to shape and challenge healthcare policy.
In the UK, we do set healthcare policy centrally, but different hospitals and clinics make their own decisions locally. Ideally, they operate within the scope of agreed specifications, but there are cases where that doesn’t seem to be happening.
At a clinical or individual level, I think it needs to become the norm that every newly diagnosed person and their family, or those important to them, has access to an experienced peer supporter. That sounds easy on paper. But it’s not so easy to achieve. As soon as you identify someone who’s going to be a peer supporter, you need to support that person, train them in safeguarding and make sure they’re the right type of person to offer peer support. Their attitude matters. You don’t want someone who’s too negative or going through their own significant issues at the time. That’s not to say peer supporters should hide the difficult stuff either but we need to help get people mentally hopeful and positive, whilst also remaining pragmatic and holding boundaries. You want new patients to feel that they can take control of this journey.
Sometimes people say I paint this picture of dialysis being really easy. It’s not and I do try not to, but if you’re talking to someone early in their journey who is so overwhelmed, I can help them to make good decisions by showing them the positives first. Down the line, I will also have more conversations about the realities and managing expectations.
An effective peer supporter for everyone would be so fundamentally helpful, but the peer supporters need to be kept mentally well too. I’ve talked to hundreds of patients over the years and they bring me all of their awful situations and stories and I can find myself drowning in other people’s terrible health stuff. I have to be really resilient and remember that I don’t have to take it all on. It’s not my problem to solve. There’s a skill set to being a peer supporter. We need our experienced, knowledgeable patients to teach the new patients (and the staff too!) how to build a great life on dialysis, how to fight for your priorities, how to navigate the system, what questions to ask.
And interestingly, social media has been semi-effective in helping that happen in recent years, but it’s high risk because there’s often no moderation. You can go on the internet and meet amazing advocates and very knowledgeable people, or you can meet people who tell you the wildest information and that can be dangerous. I don’t see social media as being the whole answer, but it has demonstrated the power of creating patient communities.
In a clinical setting, it’s about harnessing the power of the established long-term people to help the new generation. And you can see it working. There are renal units that have open days, they have home dialysis education days, they run peer support programmes where they individually match patients together. But it only seems to work well or be sustainable if they have ongoing support from the clinical team as well, making sure that things stay on track and that the peer supporters have back-up if they need to escalate anything. It’s not light touch, it takes time and effort.
How well do you feel the healthcare system addresses the psychological burden of long-term dialysis and what would genuinely better support look like?
I think every single person with kidney disease should have access to a psychologist who understands kidney disease, because to take ownership of your care you need to be mentally able to take it all on. And most people don’t get any professional psychological support.
Some UK units have a renal counsellor or a psychologist but they are so thin on the ground and they’re oversubscribed. You’ve got people who’ve been given this devastating, life changing diagnosis with no bespoke mental health support.
It’s another resourcing challenge. Even if there was funding for every unit to have somebody, I don’t know if we have enough qualified renal psychologists. It’s harder for a general psychologist to understand what renal is and what the life of a kidney patient looks like in order to offer the right strategies and support.
You completed 100 miles on horseback across Wales to mark 25 years on dialysis, and previously became the first woman on dialysis to complete the London Marathon.
Clinicians often counsel caution around physical exertion for dialysis patients. How do you think the evidence around exercise and dialysis needs to evolve, and what’s your message to the clinical community and other dialysis patients?
After doing my dialysis treatment and taking my tablets, I believe fitness and exercise is the third part of being well in kidney failure. For me personally it is not optional. Of course, it will look different for every person. For some people, it might be that they can’t walk, they’re a wheelchair user and so they’re doing chair yoga. Great, fantastic. They’re still moving their body.
We’ve ended up in a situation where so few people on dialysis are active at all. Some people think, “I’m not safe to be physically active anymore, so I won’t even try.” Some people really want to, but don’t know where to go to get the initial advice or support or a fitness professional who might be willing to work with them on the basics.
What I have learned through an unusually long number of years of experimentation with exercise on dialysis is to listen to exactly what my body is telling me and know how hard to push myself as a result. Which clues or indications I should pay attention to and which things I can just ignore. I also take an enormous amount of personal responsibility. If something went wrong, I would never, ever say to my consultant, why did you let me run a marathon. It’s my choice, my decision.
At the start I pursued exercise on dialysis because I am stubborn and bloody minded and didn’t want to give up or miss out at school. But then I realised that’s where my energy comes from. Yes, I have my EPO and iron and yes, I dialyze well, but a lot of my energy has come from getting fit. And as soon as you get a little bit better, you realise you can improve on it more and more. It’s brilliant for your mental health as well.
Multiple times in the nearly 30 years I’ve been doing dialysis, I was so sick that I couldn’t even walk down the road. I rebuilt my ability to walk over months. Every day I would take two extra steps and then three extra steps and I would be exhausted and sit in a chair for the rest of the day. None of that was really captured because it was in the days before social media and camera phones. Now people see me running the marathon. And they’re like, “well, I’ll never be able to get to that.” But a marathon doesn’t need to be the goal. Being able to walk a few 1000 steps a day would be fantastic for their health.
Showing people how far you can rebuild your fitness is absolutely crucial because when you’ve hit rock bottom and your kidneys have failed, you lose fitness and condition very fast. People think it’s impossible to rebuild. When I was younger I never saw anyone else doing it. I think you need a visible role model. Every time I post anything on Instagram, I get messages from patients going, “oh my God, I’d love to go back to the gym. I thought I wasn’t allowed.” I wonder if someone told them they weren’t allowed. Did they just assume they weren’t allowed? It seems to be a bit of both.
There’s a lack of specialised fitness education and support, saying, “yes, we prescribe you to go for a walk every day. We encourage you to lift some light weights at home.” In my observation, that isn’t the kind of clinical advice that people routinely receive.
For example, conflicting advice around fistulas is very confusing because people get told don’t ever lift anything with that arm ever again. They think they can’t even lift a bottle of water! The messaging is a bit too extreme in many cases. When I’ve spoken to leading vascular surgeons and forward-thinking clinicians about how far I can go in the gym, they say, once it’s healed, of course you can lift some weight. Granted, I’m never going to be a bodybuilder, but weightlifting is possible, and it’s so good because muscle wasting and low bone density is obviously a massive issue in long- term dialysis. I improved my bone density by 8% through weight training alone.
I think we need a third pillar of clinical care, which is prescribing some activity that is suitable for that patient at that point. And then it should be checked on at routine appointments. “How’s your walking going? Have you managed to join the gym? Do you need us to give you some pointers?” And that should be supported by positive messaging, whether it’s through videos in the units or it’s having a fitness and exercise open day where you come in and learn about fitness and quality of life activities. Renal physiotherapists are also a crucial part of the team. You’ve got to make it explicit for people. We’ll treat your kidney failure, we’ll get you on the right dialysis therapy, we’ll get your meds straight and we’ll get you fit because so many aspects of kidney failure, like, blood pressure, heart conditions, frailty, bone density, aches and pains, muscle weakness, can be helped or improved by getting fit and strong.
The other thing that absolutely underpins my good levels of fitness is doing nocturnal home hemodialysis for 7-8 hours, 4-5 nights a week, because the dialysis is much more continual. It’s gentle. I’m not pulling loads of fluid at a time. My heart rate stays steady. I’m not going through that four-hour brutal process. And let’s face it, if I was, I would probably not be running a marathon. So, there must be an honesty about the fact that the “standard” in-center dialysis regime is debilitating and does not encourage fitness because people feel so drained. But I think there’s a big difference between all or nothing. I’ve done dialysis three times a week. It doesn’t mean I did no exercise, but I did have to moderate my expectations.
In the UK a fantastic renal exercise platform called Kidney Beam was created and is run by a passionate team of renal healthcare professionals. They have fought for this for years because they recognise the power of fitness and exercise in kidney disease, dialysis and pre and post transplantation. They’ve got data on the impact of exercise and different NHS providers are starting to offer access to their patients. There are pockets of awesome activity going on. But on the whole, I would say that the kidney disease population are incredibly unfit and it is not helping us. We’ve got to start supporting people in a safe way towards what they can proactively do.
There is also the Global Renal Exercise Network (GREX), renal physiologists and exercise specialists who are driving research in this area. They are trying to create practical, tangible advice. For example, they have published clinically validated guidance for exercise on PD. It’s clear and accessible including things like if you’re going to do exercise that raises your intra-abdominal pressure, you should drain out your fluid before you do it. But if you’re just going for a walk, you don’t need to drain out your fluid. Amazing advice. And not saying, “you shouldn’t be doing it, but do this first”. There needs to be a focus on disseminating all of that research and learning to all the healthcare professionals who are doing the actual patient care, because until it gets into their hands, the patients don’t see it.
Exercise in kidney failure will always need to be a personalized discussion. What’s right for one person isn’t going to be right for another. It should be raised in consultations. It should be something nurses chat to their patients about. It should be an area where physios and OTs come and get involved with our community.
In my case, I have to be a bit careful because despite pushing my own fitness to extremes, I’m never going to give another person on dialysis advice to just do what I do. But I can share my experiences of how I approach fitness, things to think about, to ask and be aware of. I haven’t really explicitly ever asked my doctor or care team, can I do certain activities? I’ve just gone and done them. Which has led to me breaking some boundaries of what is believed to be possible on dialysis. I feel like if I’d asked my care team they might have said, “we’d rather you don’t try and run a marathon, but we won’t stop you if you really want to!” Instead, I came to them with my plan for training and they supported my decision. But I do understand that doctors and nurses have a responsibility for patient safety. And it can be easier to say, “we’d rather you didn’t.”
I don’t think it comes from a bad place, but there can be an abundance of caution. Having an exercise baseline of what’s safe for most kidney patients to tackle would be so helpful. That’s what Kidney Beam is aiming to do. It’s clinically validated and it starts at the very basics.
You’ve said you wouldn’t necessarily press the kidney failure “off switch” even if you could, and that living on life support has “unexpectedly liberated” you. That’s a remarkable perspective.
What do you think it takes, both in terms of clinical support and personal mindset for a patient to reach that place?
Some of it stems from who I already was as a person. I’ve always tried to see solutions and positives. When I think about those early days, spending all that time learning to be an expert, that investment of time and trust from my care team gave me the fundamental knowledge that I needed to reach my level of acceptance. I’ve built so much confidence, and I feel as in control of my condition as I possibly can be.
I accept I have to live on dialysis , but I don’t give into it. A large part of my being able to do that is because I’ve had stability, wonderful support from family and friends and I was never on my own handling this although I am fiercely independent and have always dialysed myself with no help at home. Also, crucially, I don’t have any other health conditions. I think that’s rare for someone who has been dialysing as long as I have. I’m not diabetic. I don’t have a heart condition. I’ve not had cancer. So many people on dialysis are living with multiple complex conditions plus , mental health conditions too. I have been lucky in that regard
The liberation bit is interesting because I can’t have another transplant. Some people think that’s devastating. But I know exactly where I stand. I’m not waiting for something maybe better to happen. While constantly waiting for that kidney to appear, people put their life on hold. They think, when I get my transplant, everything will be better. I learned at 19, that’s not the case. It taught me that I cannot pin my hopes on some hypothetical future scenario. All I have is right now.
That’s why it’s liberating. We (humans) are really quite bad at being present. We’re always like, what’s next? What if? I feel quite lucky that I am not dealing with the thought of that phone call that could come in the middle of the night and throw my life into disarray to maybe give me a better future. A lot of unknowns can be hard to live with.
People have asked me, would you go back and take your diagnosis away? And the reason why I say I don’t know, is because I don’t know who I would be or the direction my life would have gone if I hadn’t have gone through this. The skydiving, the fitness, the sense of appreciation that I still get to travel to cool places even with dialysis alongside. I don’t know if I’d have been driven to do any of that if I hadn’t realised early on that life can be so short and you’ve got to make the most of it. I love that about me, so…that’s why I find it liberating.
It’s quite freeing, you can remove a lot of expectation. I set a lot of goals, and I try to achieve loads of things and sometimes I get there and sometimes I don’t and it doesn’t bother me when things don’t go to plan. . I am enjoying the process of living and that’s what matters. Compared to my early days on dialysis I am much more relaxed. I wanted to be the most perfect person on PD. But I wasn’t being perfect. I was doing things like making up my record saying this is how much I drank and this is my fluid. It was perfect on paper. I told my PD nurse this years later. And she said, “yeah, we knew.” She understood I was living life, I was happy, and healthy enough. The attitude from my clinical team was to let the young people live, but try and keep them within some safe parameters. That is how you learn to have a life on dialysis rather than just survive.
After nearly three decades as both a patient and an advocate, what is one change in how the renal community treats, talks, or thinks about dialysis patients that you believe would make the biggest difference?
Remembering every person is an individual human and needs individual care. I know that’s so easy to say and so hard to achieve. But it would translate to people getting the right dialysis at the right time, the education, all the things we talked about.
You’ve got to think about what the individual wants. For example, the patient might accept a higher potassium level if it means they can have their chocolate treat twice a week. That makes them so happy. Whereas the doctor is always aiming for the lowest possible potassium. But the patient’s miserable because they can never eat the food they crave.
That’s just one example. What is the goal? Quality of life? Clinical outcomes? Is it the ability to get fit? Is it to run around after your kids? Is it go to work? Until you understand the person who’s in front of you, you can’t deliver personalized care.
Additional Resources
You can learn more and follow Maddy’s journey on Instagram – https://www.instagram.com/queenofdialysis/
Kidney Beam – https://www.kidneybeam.com/
Global Renal Exercise collaborative – https://grexercise.arizona.edu/
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