Yeah, my partner. Without her, I don’t know what I’d have done. To start with, when I was diagnosed, she – she knew there was something wrong kidney-wise. I’d got admitted. People came, telling me when she wasn’t in – when she wasn’t there, people would come and say “You need to start dialysis.” And I protected her, I didn’t tell her, I didn’t want her to think – we’d been together for about three years, and I didn’t tell her I’d have to start dialysis. I thought ‘what the hell’s gonna happen with this?’ Together, she’d just moved in with me. It was like, you know, ‘is she gonna want to leave me or anything?’ But also I didn’t want to – I didn’t want to panic her. And so [laughing] how we told her was she came in with my aunt one day, and I didn’t want to tell her on the renal ward, whatever I could do. Whenever she visited me that first few days in hospital, I’d do anything to get away from it, because it was full of sick people. And I’d seen from my uncle what they had to do, and. Unfortunately renal disease only seems to show you the old people, the people who are just gonna die of natural causes, and the kidneys are giving up, or other, other reasons. And so I – she would come to visit, and we’d go from the hospital, there’s a pub across the road, and we’d go and we’d grab a bite to eat instead of me having terrible hospital food. Which is probably not the best idea. Or we’d go into a coffee shop and have a cup of tea. So, I asked – the renal ward was right next to the renal outpatients, so there’s a little room, so she doesn’t have to – and so I went into there, and I told her. She was like “Okay then, so what does it mean?” So I was like “I need to start dialysis.” “Tell me more.” So she was like really supportive. “What do you need from me?” And so from that start, she’s been fantastic. Mentioned earlier, on a weekend when I wanted to work full-time, I’d leave her and she’d have to – she’d have to do the tidying up. I just didn’t have the energy. She’d help, she helps me remember medication now, all the time, to be fair. I have alarms and everything, but I’m one for switching alarms off. And at ten o’clock at night when I have to take medication she will set her alarm as well, to make sure I’ve got up. I leave them in a little pill box, beside table. Morning. In the evening. And she’ll get up, I’ve seen her walk round the bed with the light on the phone and make sure I’ve taken them. She went “Have you taken them?” So I’d hate to think how many doses of medication I would have missed, and caused problems for. She cooks, cleans, it’s like my own little [laughing] personal assistant, when I don’t have the energy to do it. I’ve had a transplant but there’s days when I’ll still be completely wiped out. And she, yeah. Thankfully she, she’s a terrible cook but due to cheese toasties and steroids, I’ve managed to plenty of weight on. But she – yeah, she helps out massively.

And you’re quite an advocate of looking on the internet for –

Yeah, try and search out, but look – the NHS website is, for any sort of renal problem, is quite good. Anything dot gov. Be careful of being lured into anybody trying to sell you a cure, or a save, or eat some turmeric and you’ll be okay. Yeah. I looked at them to start with, and then realised that if something – if that’s, if that was true, then the NHS wouldn’t be spending millions and millions on renal medicine each year. So, go to places like Alport UK, find out when the next meeting is. Go along. I went along, not really knowing what to expect, and there’s such a good mix of people. People who’ve been transplanted, people who are – kids have Alports. People who are, who certain stages of renal issues, or kidney disease with Alports. So you’re gonna meet somebody who’s in a similar situation to you, possibly locally to you as well. I went to one about two years ago, we got information on – for my daughter, or who was on the way. But in a year or so’s time as she’s a little bit older, we could probably go along. Been told there should be no concern in these early four or five years. And about five – four or five – they might start taking blood. But in the meantime if they notice anything, to do that. So for me, it’s that. And then there’s a few people who’ve had transplants as well. And looking to try and see people who’ve had transplants for twenty years and thirty years, and forty years. But it’s so uncommon that it’s difficult. Or people have had transplants maybe because of Alport, I don’t know, they’ve just had shrivelled kidneys, or it’s been diagnosed as something else, so. I’d just say to do that. Get as much information as you can.

And how was the first session at home, doing it on your own?

Absolutely terrifying [laughing]. The first night that I set up at home, the dialysis nurse came home with me. I’d been setting my own machine up, and she watched at the hospital. And then when I got home, we set the machine up, we found a clean area, and I set the machine up all ready for when I wanted to connect later on. Could leave it for an hour or so. That was okay. The following night, myself and my partner got everything out, laid it all on the bed, and we just had it on a, a bedside table. It’s that convenient, the machine. And we got like a drip stand for extra bags. And we got everything out ready. And we sat there, reading the instructions to each other. Done it half a dozen times, with staff watching me, but this time it was – you’re on your own. There were numbers we were given if there was any problems, somebody would come out. But it was – I needed about ten hours for the machine to cycle through. And so I’d want to try and get on it before no later than ten o’clock. So I’d then be able to disconnect at a certain time, get to work. So we like started this at seven o’clock, and it took us about an hour just to make sure we were pressing the right buttons, the right connectors. There was a set procedure that I was given, about washing hands. So I’d wash my hands. I changed my taps so I could have little elbow things, so I wasn’t switching taps off. And then as I walked out of the bathroom I got the light cord and switched the light off. And then it’s go back and start again, because. I washed my hands, the proper procedure you see in the hospitals. And so for the first week doing it on our own, it was – it was scary. But I think not always being on the phone gave us the confidence that if something went wrong, or we missed a step we could go back and we wouldn’t panic, we’d just – right, we know where we are, let’s reset and start again. And we got into that. And then after a week or so, this thing that’d take us an hour got us down to ten minutes. And then I started to look logically at going to and from the bathroom, washing my hands and stuff. And I was like ‘okay, can do different – move these steps around, and just wash my hands once, do everything, leave it, and then before I connect again, just wash up and then connect. So, yeah. I gave that back to the nurses, and they just said “Okay, we’re still not using that, but you carry on. Whatever’s comfortable for you.” During that time, my results for clearance on dialysis on that type weren’t very good. I was retaining a lot of fluid. And I think that was partly my own fault as well, that I wasn’t as strict with my fluid intake. So I suffered with my blood pressure.

But in that first year, I went back to work. And I was on quite a high dose of steroids to start with. And I found that I was – well, I didn’t realise it until people started mentioning it, that I was quite aggressive. Short with people. And generally not very nice. Which is something you don’t realise, I guess.

So that was in that first year. So we’re looking at 2013. It was early 2014, just before my donor got married. I was at work, and I’d spent a day on a project. And something went wrong. And they have these like blocks of post-it notes that companies give out. And I’d got one, because I was writing something on it, and I got that annoyed with what I’d lost a day’s sort of work – that I threw this block of post-it notes unfortunately to one of my mild-mannered colleagues. Not at him, but in his general direction. And I threw it. And as soon as I had, as soon as it left my hand, I thought ‘oh dear. Not ‘am I in trouble with anybody here?’ Because I think they, they must have known, and noticed that I’d changed a little bit. So I apologised. Well, I walked straight out, I was so embarrassed. I sat on the toilet, cried. Because probably that was the realisation that maybe in the back of my mind I’d known things weren’t right.

But that was the realisation that probably I’d turned into a little bit of a Jekyll and Hyde character here. So my colleague, I took him to one side, I apologised. He said, “Don’t worry about it, it’s no problem.” I said, “No, I am worried about it, and it is a problem. It won’t happen again.” I went into clinic a few weeks later, mentioned it to my consultant. And there’s not – not really any support network for once you’ve been transplanted. There is pre-transplant, there’s dialysis social workers, and there’s renal social workers, and loads of help. But I was just kind of – not discarded, but it’s – I guess people think you’ve got other things to worry about, medically. And for me, that wasn’t the problem, it was mentally. So I asked for help. And thankfully my transplant centre had psychologists, psychologist team. So I made an appointment. Well, they made an appointment for me to have an initial assessment. We sat down. And if I’m honest with you, I thought all this – you know – I’m just, ‘I’m a guy who’s 35 years old, pull yourself together’, is what I would have told somebody else. And I got to that point where I sat with somebody in a room, and we talked about my fears, everything. And I just found out that I’d held a lot in, I’d not really told family and friends how ill I ever felt, how frightened I’d felt. My fears for the future. You know, if the transplant fails. My problem, I’d had like nearly a year of this on my mind. I just think – the analogy I gave, it’s like a pressure cooker. And it’d just finally gone. And so we started an eight week programme of writing down what happened through the week, triggers. And I was asked at the first one, “Do you want a tablet to sort this out?” And I was like, “No.” And the person who was helping me, she said “Fantastic. Because I don’t want to give you a tablet, I want to find ways to help you cope. So, using cognitive behavioural therapy. And find ways of, for you to identify when things are gonna get too much for you. But also what you can do to diffuse those situations, and help relax as well.” So we had about eight weeks working on this. And it’s an open – not an invite, appointment – then to, if I ever feel that things aren’t going well again, or I’ve got new fears, concerns, that we can revisit that. So I found that that helped massively. And yeah. It helped massively.

The next thing I remember was quite embarrassingly lifting up my gown, trying to see – because I’d wanted rid of this PD tube into my stomach – I was warned for the neck might remain, because if the kidney doesn’t kick in straight away, might have to do some. So I knew that was there. But I – this tube, that was the thing I wanted rid of. I was lifting that up, not realising obviously I’m butt naked underneath this gown. Trying to look round, and pull this thing off, and – I’d had my tube out, and I’d got a big bandage here, and – yeah, naked.

I’d got two nurses helping me out, trying to cover me back up again, and get me to drink a little bit of fluid. And I’m trying to guzzle fluid, and they’re trying to give me it through this tiniest little straw. I remember high-fiving in some weird anaesthetic state, high-fiving anybody who came past. Shaking people’s hands. Maybe a bit euphoric, maybe a little bit high on painkillers, and everything like that. So it was quite funny. And then went back to the ward. Went past the day room, saw my family [laughing]. Apparently I tried to get them to phone [my cousin], because he was in a different part, to find out he was. What I didn’t realise is that when they removed his kidney they’d pumped him full of air, and he’d had quite nasty surgery, and he was in some discomfort. And he was on a morphine driver, trying to press that button like it’s a fruit machine or something. So he really struggled, from my understanding. At that time I was a little bit out of it. And then we’re looking at – so that was a Monday. Tuesday. Probably early afternoon. What time would it be? I’d started to sit up, and they’d got me out of bed quite early. It was about seven o’clock I came back from theatre the day before. And it was about eleven o’clock they’d helped get me out of bed. And I was sat there. And I heard a shuffling. And this drip stand came round the corner. And he’s hunched over, he’d – they take the kidney out similar to how they put my dialysis access in, so they cut just below the belly button, and then they use keyhole surgery to go in and cut it out, and then this guy puts his little hand in and pulls the kidney out. So he came hunched over, holding his stomach. Probably one of the best things I’ve ever seen [laughing]. Him in pain is not what I wanted to see, but to see him up on his feet. Because they pumped him full of air, he just kept burping, trapped wind, and complaining about his shoulder. And then the following day – so he had the surgery Monday morning. My partner took him and his partner home. Because he wanted to see the kids. He left on a Wednesday evening at six o’clock. So he’d had surgery Monday morning to take a kidney out. Probably a little bit too early, but he wanted to be at home.

I think any medical condition that, yeah. Chronic medical condition. Or anybody who feels that way. Or if somebody said to them, “You’re not yourself.” Yeah. Because I had a family friend who’d also had a transplant. And, through a different disease, polycystic kidney disease. He had a deceased donor. And he really struggled with that feeling of guilt, from when I spoke to him – he was thirty years older than me. And he said he found speaking to somebody outside of his social group, his family – didn’t feel like he was putting pressure on those people to help him, or to try and fix him. He could go away on his own, and do that as well. I don’t think it worked as well as it has – for him, as it has for me. But he recommended it when I initially put that out there. So I’d, I’d say that anybody who’s sort of been through a transplant, chronic illness, that if it’s available and you feel it’s necessary, or someone outside – oh, sorry – someone from the outside said “Maybe this is what you should look for.” You know, yeah. Make that step. I think that was the, that was the difficult part. Admitting to myself. But once I’d done that it was so easy. And got so much more from it than anything else.

And so that was for eight weeks. And then? What happened then?

That was it. The person I spoke to felt that I’d got the techniques in place. And “Did I feel comfortable with them?” She asked me that. I said, “I feel okay.” She said, “Look, I don’t think there’s anything, anything more we can do.” With this session, I don’t know if it was like that was the kind of session, it was planned out or anything. But she said, “If you’ve got these strategies, methods to try and cope with it, you can identify it, then go away. If you have problems, then please speak to your renal team, they can re-refer you again, and we’ll happily see you again. But we feel that you’re okay.”

So, when I’d been transplanted, we – what year was that? ’12? ’13. It was around summer twenty – yeah. It was only a few months after I’d been transplanted. We took a holiday in the UK, with my donor and his family, and spent some time at the coast. And my partner and I had a walk round the beach one day, and we were sort of discussing how things have – how weird it’s been in the last few months. And she’s always wanted a family. So I asked her, “Would you prefer to get married, or have a family? It’s a choice. We can afford one and not the other.” And so she obviously jumped at the chance of a family, because then she’s trapped me [laughing]. And so, with it being genetic, I said “Look, I’d need to look into it as well.” So, thankfully, there’s a genetic team at my transplant centre who look into polycystic kidney disease. They were happy to look into how my Alports was linked. X or Y linked, X-linked for me. And. Just, and to make sure it was as well, they do the genetic testing, get some information. But also then obviously if we had a daughter, she’d be a, a carrier. And potentially have issues in future. Had a son, that’d be the end of it. So, we sat there and made the decision that we were gonna go for it either way. And, yeah. We, we have a little daughter now, 18 months old. [whispers] Oh god, it’s a nightmare [laughing]. She’s not, she’s fantastic. It’s the best thing we ever did. And, thankfully, because of my knowledge and experience – knowledge and experience of, of what happened, when she was born, the doctors were aware that she could have Alports. The did some tests on her, they found a little bit of blood in her urine when she was born, but apparently that’s quite common in little girls. But they were really on that, just to make sure there was no kidney issues. Or scans, was – twelve weeks, and – I should really know. Twenty four weeks, everything was good and healthy. She had little, you could see her little kidneys and stuff, and everything’s sufficiently formed. So that was okay. I think my partner thought I was hoping for a boy, when we had the – we could find out at twelve weeks. She said, “Oh, you were crying, you were so upset.” And I was like, “No, I was just – just so happy.” I’d gone from somebody in October 2011, going on dialysis, not knowing what was gonna happen. And then, yeah. Christmas – well, yeah, just early January 2014, you know, I’m gonna be a Dad, but [whispering] we don’t tell nobody.

So that’s it. So it’s just unfortunately – well, unfortunately – because she’s the best thing that’s ever happened to me, but [daughter’s name] will be a carrier. And then she’s got that choice then. Which I spent a lot of time thinking about. If I didn’t have kids, from my family there’d be no more Alports, that’d be it. But we just thought in forty years’ time when she might think about a family, maybe fifty, [laughing] – she’ll get married when she’s forty five – that we don’t know what might have changed, that way. It could be something that they might offer IVF, that kind of treatment. Or there could be not a cure, because it’s a genetic condition, some missing collagen, but there might be something that can be done. Medicine made massive advances. And so, yeah. It feels tough that we’ve passed this decision onto her, but I’m sure that things will change between now and – in the next twenty years, things will, things will move on. And yeah, she might just have a little girl, and decide to call it quits [laughing].

And what medication were you on?

I’d had an anti-rejection cocktail of – and when I said ‘no problems’, we’ll get back to that, actually – you might be interested in this bit. I’d had prednisolone, and two – which are steroid. And two anti-rejection medication. One was Adapore? [Adoport], and the other one was mycophenolate. So they helped control my immune system and prevent rejection. Everybody’s dose differs. So, when I first started we were talking in clinic with people who’d just had transplants, “What do you take? When do you take them?” And I noticed that everyone, everyone differed. And they were like “Well I take more than you.” Or “I take less than you.” And I just told “Look, it’s the absorption rate. If you’re taking twenty or one, it doesn’t matter, as long as your body absorbs the right amount.” They said, “So it could be some small old woman needs one, a big bodybuilder needs one, you might need ten. So, don’t worry, we’ll make sure.” And they have a ideal range to work in, and they sort of explained that to me. So now when I go into clinic I’m looking round at the computer and trying to see from the consultant what’s, what’s going off, and I’m starting to recognise the little symbols they’re using, and little how they’re shortening up on them. So, everything – everything was okay. I said earlier I had no problems. But in that first year, I went back to work. And I was on quite a high dose of steroids to start with. And I found that I was – well, I didn’t – I didn’t realise it until people started mentioning it, that I was quite aggressive. Short with people. And generally not very nice. Which is something you don’t realise, I guess.

Yeah. It all started while I was at university here, at [University name]. I was just starting the second half of my first year at university, in 2001. And my part-time job was at a fast food chain, and I went into work one morning after Christmas, went to the bathroom, and passed what I only I can describe as Ribena into the toilet. So my boss, thinking it was a ploy to get away and go out partying or anything wouldn’t believe me. So I had another member of staff come, and I peed again. And that afternoon I went to see my GP, blood in the urine. Because it was quite, it must be quite worrying for anybody, they had me in straight away. I did a test, and they was gonna dip it to see how much blood was in my urine, but it was Ribena-coloured. And so then that became part of the – well, that started the journey of trying to diagnose what was happening. So I was sent for not a colonoscopy, the camera into the bladder, I can’t remember the medical name for that, if I’m honest. And so it was a little bit undignifying at 23 years old, to be in a room full of older guys, being prepared to have this camera somewhere it shouldn’t go [laughing]. They checked that out, and nothing. Nothing came back, there was no damage in the bladder, nothing. The only thing they could find was some protein and blood in my urine. It had gone back to normal colour, but I was leaking blood and protein into my urine. So I was sent then to hospital in [place]. And they suggested the only way they could find out – sorry, I’ll jump back. My uncle had already had renal failure, on my Mum’s side, but they couldn’t find out what had caused that renal failure, and he’d just had a transplant. And so they looked at family history, and they thought okay, the only way we can discover what may have caused my uncle’s renal failure and what could possibly be causing mine, or well kidney problems, would be for a biopsy. So a few months later I was booked in for a kidney biopsy at the local hospital. And they took two or three samples. And within a month they came back with the lab reports, and they mentioned in the clinic follow-up that I had Alports. Nobody really at that time – it seemed to be quite rare. Nobody really knew what was happening, and I was not put on any medication. I’m just referred once a year, to keep following up. For the first two years I was yeah, there every time. And then I missed a year. And then following year made a year. And then just life took over.

I bought a house, started working full-time, and I missed appointments. So for about four years I went under the radar without knowing what had happened. I was fit and healthy, I played football, sports, I ran. Not a problem. I was fit as a fiddle. And then in 2011 I’d been to India with work. Came home. Felt a little bit groggy, thinking it might have just been something I’d eaten. Went away for two weeks on holiday. Somewhere nice and sunny. Came back. Felt groggy, and had headaches. Then I just felt run down for about two weeks, and I was thinking it was the effects of holiday, quite a bit to drink, lots to eat. But I went to my GP because of the headaches. They tested my blood pressure, it was about 160 over about 80 or 90, which they said was high. And took some bloods. This was beginning of the week. And then every Friday after work, I would with friends, I’d go and play a little bit of five a side football from after work, say six o’clock. And I was playing football, I was running around. I was really out of breath and sweating. And it was like ‘this is, this is weird. Just over-indulgence for two weeks away. And I stood there, trying to catch my breath, chasing old, old blokes around – blokes who were twenty years older than me, thinking ‘this is not right. And I looked, and I could see someone familiar coming across the car park, and it was my Mum. And I was like ‘okay, this is a bit weird. And she said, “The GPs have been trying to ring you all day.” And they’d not been able to get hold of me, trying to ring me at home. They’d finally phoned the other number they had, which was Mum’s. So she said “She wants to speak to you now.” So we got in the car, and just thirty seconds down the road, pulled into the GPs. Sat there for a minute or so, and then was called straight in. And Mum was “I’ll come in with you.” And I said “Ah, you’re okay.”

So I was called in to see my GP. And his first words were “I need to take, send you to hospital, refer you to hospital. Now.” He said “You’ve got renal failure.” And I was, ‘okay. He said “The blood test that he’d done, sent away, came back with renal function at eight percent.” And he’d only just got the results back from the bloods. And so I was – I guess I felt fine. Maybe looking back now, I think that it could have been such a slow steady decline that naturally by body’s become used to how I felt, and that becomes the new normal. So, shock. Massive shock. And feeling a little bit sorry for myself, but also guilty that I’d not followed up my clinic appointments yearly, because there may have been something that could have been done to decline that, reduce that loss of function. Because the only thing I was told at my initial visit was that with Alports, you’re expecting around about 50 years old to start suffering from problems. And that’s – the guys at the hospital, that’s all they’d ever seen people with Alports, in their fifties, that’s when they had problems. And so that’s probably why I had this feeling of ‘I’ll be okay until I’m 50 and then we might have to take some tablets. Obviously it’s not the case.