Live Your Best Life...Even If You're on Dialysis

In this TEDxRoyalTunbridgeWells Talk, Maddy Warren discusses how she was able to live her best life because she was able to do dialysis at home in this video. The transcript of the video follows.

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Video Transcript

I don't have a direct connection with Tunbridge Wells but I don't know if many of you know about a mile and a half away from here is Tunbridge Wells Dialysis Unit.  For those who are not aware, dialysis is the machinery, the equipment that's used to replace kidney function for people whose kidneys have failed or who don't have any kidneys.  

Your kidneys are two organs that are about 150 grams each and they sit here; in here. I have a friend who was recently really excited to find out you actually do have two. You don't just have one and you can actually function very well with just one and the reason why I'm interested in Tunbridge Wells Dialysis Unit is 17 years ago my kidneys went into kidney failure and I lost my own kidneys and I've been on dialysis ever since.  

Now it's not necessarily for me. I'm not a typical dialysis patient and what I wanted to talk to you today about is the way that people perceive those who have health conditions and who have illnesses and how people somehow become defined by it and I think that's really, really sad and I think we have a huge opportunity in the kidney treatment world to make a difference.  So for anyone who's ever met someone on dialysis, typically they spend three days a week or a large part of their three days a week going to the hospital or going into the satellite unit like the one in Tunbridge Wells to have their treatment and they have needles in their arm. They're attached to a machine.  The blood goes around, around the machine for about four hours and in that process it's cleaning all the toxins and waste out of your body and it's kind of rebalancing everything because in between sessions.  

So for a good day and a half, up to two days you don't have anything that is taking waste out of your body so in between dialysis sessions. A dialysis patient is basically being slowly poisoned by everything that they put inside them. Your kidney also controls the calcium levels in your bones. It's involved in the process to help you make red blood cells so it helps you to carry hemoglobin and oxygen around your body.  It's involved in your memory and your brain function.  It's involved in the acid balance in your blood so it's a really complex organ and a dialysis machine I would say kind of deals with some of that and it certainly keeps you alive.  

I don't think it replaces  the entirety of your kidney function; so absolutely a kidney transplant is the primary way that we want people to go; but frankly that's not an option for a lot of people.  So, why is this important? When I was 13, I very suddenly, out of the blue, developed an autoimmune condition.

My immune system stopped recognizing my kidneys and actually started to attack them and the picture on the left there is. I just spent probably about three months in hospital going through a lot of different treatments to try and suppress the condition that I have and try and actually reverse the immune problem. I spent about a year and a half mostly living in a hospital as a 13-14 year old. 

One of the treatments that I had was chemotherapy. So when my hair grew back I decided to dye a bright orange just because I could; don't think I'll ever do that again.  Not really my color but  I went through a lot of quite life-changing challenging issues as a young person and I think what I learned from that experience is don't take life for granted and it really can just all change tomorrow and you really should be thinking living every day because that can happen to any of us.  I was a happy healthy sporty horse riding kind of teenager and all I cared about was being at school, getting my work done, hanging out with my friends and then suddenly I was living in the hospital.  I completely lost control of everything that there was in my life;  and then I was faced and you'll see up here, with the fact that actually my kidneys were not going to revert and look they’re  not going to get better. 

And actually I was going to have to go on to dialysis and so in October 1998 I had my kidneys removed and I started on dialysis because I was kind of bolshy and I was fairly allergic to the hospital at that point; and I just wanted to get my life back on track. I was never ever going to accept having to dialyze in the hospital and I was really lucky because under guys in St. Thomas's in London which is where I was being cared for, they had a real sort of pioneering approach to helping patients actually own their own treatment. Manage their own treatment and dialyze themselves at home which was really quite rare at the time. It's becoming more common now but I would say only around 10 percent of dialysis patients dialyzed themselves at home even now; and yet it is by far and away the best form of treatment.  It's cheaper; it extends your quality of life; it just completely transforms.  

So something that I'm really passionate about is how do we help more kidney patients have the confidence and the education and to take ownership of their treatment.  So that they don't have to go and sit in the dialysis unit in Tunbridge Wells, in London, in Scotland for three four days a week; and frankly that they, between, they feel dreadful so it's not even really helping them to live it's helping them to survive and I think they're two very very different things.

So in my house, I have a dialysis machine.  The cat is not supposed to be on the dialysis machine.  He's five years old and when he was a kitten I trained him to not get anywhere near the machine and the other day he suddenly decided that looked like a cool place to be.  So but that, for me, that picture just shows how my machine is part of my life and it's just there and it's just normal and for sixteen and a half years which I worked out is something like I think 6000 days. I've spent about thirty thousand hours dialyzing in the last 16 years to survive; and to actually live and I've spent another probably seven or eight thousand hours setting up the machine, cleaning the machine and taking the machine apart; kicking the machine. shattering the machine.  It's not the most reliable piece of equipment. My colleague is in the audience here and she knows I'll come in to work in the morning going, “oh my God, machine played up all night.”  I didn't get any sleep but actually it's joyful that I have the machine in my house that I can use at night and so I sleep try to sleep for four- five- six hours every single night which is the closest you can get to having fully functioning kidneys that are working 24 hours a day; Like you do and so then I sleep go on the machine, wake up, get off the machine I go and live my life and for me that's what I think that's the only way that this  treatment can be offered to patients.

We have a real problem in that we're going to see an explosion in the number of people needing kidney dialysis in the next 15 to 20 years. People are living longer.  Lifestyles are changing.  Diets are changing.  We have a much more multicultural community and actually some ethnic groups are more prone to kidney disease and so we have a huge problem  in this country and globally. And at the moment we have this archaic system where somebody comes to the hospital and they're told your kidneys are about to fail but we're going to put you in a nice clinic and the nurses will look after you and you'll be fine when you come for dialysis. 

And that's what happens and they become institutionalized very, very quickly. It's just that dialysis is a scary thing.  You're putting huge needles in your arm.  Your blood is going around a machine. Your blood pressure goes up and down.  You feel really weird.  It takes a while to get used to it; and the danger of putting someone in a hospital is by the time they start to become stable, they start to feel more well.  They start to understand what it is.  It's very difficult to say right now you're going to go home and do this by yourself and so do 10% of people in this country.

I think I was the second person in the UK to go on overnight dialysis.  It's not really changing and from an NHS perspective.  We know that the NHS is under the biggest strain it ever has been.  So another reason for this is to help people not only develop a life outside of the hospital but actually take these people away from the hospital because they don't need to be there. 

So Kidney Research UK is a charity many of you may have heard of.  They are one of the biggest kidney charities in the UK; and they particularly fund research so they help sort of fund; and provide grants to the medical staff, clinician, scientists who are looking to develop treatments to cure kidney disease; and looking at innovation around how to treat kidney disease and transplantation and I'm a huge supporter of them and I always have been. 

I've just completed six years as a trustee of the charity but also have done a lot of fundraising so up here on the top of Ben Nevis to celebrate my 15th year on dialysis.  Myself and my dad who is here at the back, we climbed Ben Nevis which is the highest mountain in Scotland. I think I'm the only dialysis  patient to have done that but I'm not 100% sure.  And then recently I also climbed Snowden so now I just want to get Scafell Pike.  But I'm not doing the Three Peaks because why would you climb it in the dark. My brother and I, that's my older brother there, we did some crazy obstacle run and then that's my whole family and we did the kidney research London bridges walk.

But I think what's really important as a patient is you need to get involved with the organizations and the bodies who can actually help create change. So kidney research is focusing on the funding and the development of treatment and innovation around how we can actually look at kidney disease and find a cure.  Their aim is to ultimately find a cure for kidney disease so nobody has to go on dialysis anymore. 

Interestingly their current campaign is called the missing million and I think kidney disease is less well known and understood than lots of other health conditions such as diabetes, heart disease and cancer.  But they estimate there are at least a million people in this country who already have or will have the early stages of kidney disease in the next five to ten years and actually there is so little knowledge about it that people are not recognizing the early signs which if you can pick those up you won't ever get to the point of kidney failure.  Of having to have a transplant and so as much as anything, there needs to be more knowledge and, kind, of awareness of early onset around this condition and so they're doing a lot of work with GPS and with hospitals and with clinics and with local communities to try and raise awareness through the missing million campaign but aside from that; what this has really taught me is that actually the perspective that you can have on life.

So I rely on a machine to keep me alive.  If I wasn't on that machine I'd be dead within a week.  It's probably a little bit less than that and that's quite clarifying.  And that's something that I've grown up with and so for me it's become a norm.  I have the machine. I have to go on a machine at night. It's like brushing my teeth; as I can see my dinner.  You know it is part of life. 

However I am not in a morbid way when I am so aware of my own sense of mortality that I just want to do everything I possibly can in life and I want to do it all now.  I'm not going to wait until I'm older or retired or I have more time at work or you know.  I want to do it all now so essentially I never get to sleep.

I think this is what I'm getting from this, but as well as working pretty full-time in the city,  I pursued lots of activities that make me happy.  So sports, winter sports, climbing mountains, climbing glaciers. I try and take a selfie on every machine that I visit.  When I go on holiday and I go abroad,  I have to find dialysis where I'm going. I've got a nice collection of selfies.
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That's in Iceland earlier this year. That's the glacier at the mouth of the volcano which spewed ash everywhere in 2010.  So that's the guilty party and then last year, I took part in the skydive tandem jump for World Kidney Day.  We wanted to get as many kidney patients to jump on the same day as a kind of media stunt in aid of kidney research UK and I did my tandem skydive and I landed and realized that what my life had been missing was falling out of a perfectly good airplane.  

So I trained to do my solo skydiving license which I qualified about a year ago and I've done about a hundred skydives since.  Then which is a perfect way to waste every single weekend that you have.  Anyway,  I'm now a qualified formation and solo skydiver; and that's my huge passion and I think weirdly despite having had some fairly hairy moments from my health and in my life.  I'm still seeking out the most adrenaline-fueled hairy moments I can possibly find because I almost want to find the buzz that is in my control rather than the things that have happened that weren't in my control and so I found skydiving. And it is a complete obsession, then you'll find any sky diver a very boring person for they ever want to do is tell you about skydiving. And if you've never done it, it's like I don't really get this. 

But the point being I think that for lots of kidney patients who are completely tied to the hospital, they spend hours traveling there. Hours dilating there.  The days in between, they just about get over what's quite an aggressive process of having all your blood cleaned in four hours of stripping out toxins, dripping out water.  It takes you a good 12 hours when you do it like that to get over that. and then you have 12 hours of relative freedom and then you're back at the hospital again and it just it makes absolutely no sense. 

So, I've started to do some work with various healthcare companies who are Baxter global healthcare and others who actually supply dialysis equipment and are very well connected to the dialysis community, to the medical staff, to the hospital directors.  And we really want to start a campaign to promote home dialysis and high-dose regular gentle dialysis in the way that I do it to as many patients as possible both in the UK.

And actually abroad many countries have no home dialysis at all so when I was in Iceland in February, I was dialyzing  at a unit in Reykjavik and they didn't even know that you could dialyze at home.  And that is ridiculous that's in the kind of well developed country and in fact,  Iceland is so remote and you know so people live so far apart that it would be a prime candidate to have dialysis at home because otherwise people are forced to live in the city and live near the unit where the dialysis can be provided. 

So I think that what's really exciting is something which happened to me. Originally I had no control over it and it wasn't you know it wasn't a positive thing. It is now something that I'm almost starting to see as a positive thing because it makes me really passionate and I actually want to use my experience to go out and help other patients, and to educate them, and to empower them to ask for home dialysis.  To ask how they can actually get more involved in their treatment and to help the doctors understand that this is something which you can really really bring back and take ownership of yourself.  It's almost a bit like Stockholm Syndrome.  I think because I've gone from hating the thought of dialysis and hating that I had this illness and hating that I was really sick at the time to having complete ownership and control and suddenly it's like well this is just a thing that has to happen and it's almost now it's like a love-hate thing.  I don't love it but I completely rely on it and actually I'm so much happier that it's in my control it's my machine and I run my life the way I want to.  Then having to be tied to a clinic to a hospital and being seen as a patient and there's someone who's sick so that was my method. I hate that it was okay. and thank you very much for having me.

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About the Speaker

A familiar face in the kidney community, Maddy Warren is often held up as an aspirational person, with her incredible achievements as a kidney patient and for her positive, can-do attitude to life.

A former trustee of Kidney Research UK, over the years Maddy has raised thousands of pounds for UK kidney charities. She became the first woman on dialysis to complete the Virgin Money London Marathon in 2018 and she is a member of a women’s skydiving team.

Yet behind the scenes Maddy relies on dialysis to keep her alive. She has focal segmental glomerulosclerosis, an autoimmune condition which attacks her kidneys.

Complications after a kidney donated by her father failed means that she is no longer eligible for transplant and a dialysis machine will take over the role of her kidneys for the rest of her life.

Despite being on dialysis for more than 20 years – if statistics are to be believed life expectancy on dialysis is between five to 10 years – she is happier and healthier than ever.

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Patient Education Disclaimer

This material is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. KidneyLuv makes every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.

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