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.

She – once she sort of knew the family history of Alport Syndrome, she was like same as my Mum, just [laugh] telling me to go to the doctor, and stuff like that. I don’t know why I didn’t, probably just laziness, to be honest [laughing]. Which in hindsight is so, so stupid and terrible of me. But at least I, I did get diagnosed. But my partner’s been supportive. She obviously read everything as well, once it happened, but. I mean, I think everyone’s got something wrong with them they need to monitor, and things like that. So it’s just, just a hoop you need to sort of jump through, and that we need to remember. Just oh yeah, in the future I’ll probably need to go on dialysis or get a kidney transplant, so. Because it’s not physically there yet, I think we’re both sort of just trying to get as much stuff done now, as well. Just because travelling will be a lot harder then than it is now [laugh].

It was – you’re quite self-conscious. I was single when I started on dialysis, so you’re always self-conscious of your body when you have this tube that comes out, it’s not normal. And, but he’s been absolutely perfect, and really understands everything. I maybe didn’t so much go into Alport syndrome but I maybe explained more about the dialysis and how that works. But one thing we have spoke about is how Alport Syndrome is hereditary. So there’s gonna be a day when we’re gonna want to have children. And that’s something that slightly worries me, because there’s a fifty-fifty chance that I could pass this on to, if I have any sons, then I could pass it on to them. And then it’s more serious in males, so that’s something else that does worry me. Whereas I do know and hope, because I have coped so well with it, that they will too. But then I’ve not had the, the addition of the loss of hearing and eyesight, so.

Yeah, I have to be focused on myself. You know? What’s best for me. And I still do it now. You know? But it, it does, it does play a big part in your normal life, yeah. Relationship-wise, and things. I feel pretty much set in my own way, you know? In my own ways. Yeah.

Did you find that – did it impact relationships and friendships?

I mean, I was married. I was married for sixteen months. But that, that split wasn’t nothing to do with the illness as such. But I think now, you know, I’m still a single man. Divorced, if you like. It’s affected – I’m not looking for a relationship, you know? I’m not – and don’t get me wrong, I’ve been on a few dating sites and stuff [laughing]. But I still get this doubt in my mind, am I ready? Can I cope with it? Can I? You know? Because it’s a bit like ‘look after number one. You know? I certainly couldn’t take – even though when I was married I had two sons. Not mine, but my ex-wife’s. And, sometimes I wasn’t fit enough to take that responsibility. You know, was too tired. “Oh, let them get on with it.” You know? That was my easy, ‘I’m too tired to cope with it. You know, that – I suppose that does have a negative, you know, aspect. But no, I mean, I’ve had, when I started dialysis again in 2014, I did see the renal counsellor, or the renal psychiatrist.

Okay.

Yeah. And she was very good, you know, I told her all – all about my relationships, how I coped day to day with the dialysis. And it, I would recommend anyone, you know, with the problems like myself to, you know – don’t be proud. You know? Do it. No skin off my nose. Because there was things I could say to her, that I couldn’t say to my family, you know?

I mustn’t forget my husband. Because we’ve been married forty years, and he’s been amazing. He’s always there for me. Yeah. Unfortunately it’s taken its toll, and, you know, think he’s suffered from stress-related illness. Yeah.

Yeah, do you think it’s been difficult for him then?

It is very difficult. It’s worse for the person who’s the carer, or the onlooker, I think. All the things have happened to me, there has been rather a lot.

And my husband’s always been there for me. But you know, it’s just been constant. There’s no let-up. You know? I know I’m lucky enough – a lot of good things have happened. Like, you know, I’m lucky enough to have a transplant that works. And my cancer hasn’t come back. So, that’s a good thing. But it’s just so wearing. You know? You get very tired. Mmm.

Christine: So, we both met at work. So we worked at the same place. And as I say, Paul was on CAPD when we met. You used to use that system, didn’t you, for dialysis. So, yes. And you – the funny thing is, Paul said if ever you got the transplant [laughing], you would ask me to marry you. And then a little while later

Paul: Thinking I’d have a few years. Six months later

Christine: [Laughing] a little while later.

Paul: [Laughing] or it wasn’t even that.

Christine: [Laughing] no. Along came the second transplant. So yeah, we got married in ’91. In ’91. So I’ve always known Paul with, you know, all the problems that Alports brings. And dialysis, etc. But then you had your transplant. And we had quite a number of years. So, how many years?

Paul: Fourteen.

Christine: Fourteen years. And that’s when we had our family then. So, Emma and [my son] came along in those years, didn’t they, so. But we’ve always had to deal with the Alports, haven’t we. And it just becomes – in your family, it just becomes the norm, sort of thing. You know, it’s there, and you just – just deal with it, really. It’s hard to explain, you know. So many people will – if they say “What is Alports?” And you explain, and dialysis, and things. And they’re sort of a bit blown away with all what goes on around it. But when you actually live with it, you just – just get on with it, really. Yeah.

I’d met my wife to be before my kidney failure was diagnosed. And it was then subsequently diagnosed. I went on dialysis. We planned to get married at some point and if a transplant had come through by the time we got married all very well and good. That would have changed other things. We my transplant came along in 1980. We got married in 1981. So I think I was dialysing from around 1978 sort of, you know, about 2 years, 1979 something around that time.

Did your wife know about, all about your Alports and then?

Yes she did, yes she did. It was once, once I knew about it then she knew about it and it was at that time we had explained what kidney failure meant and we also again at that time. I think it was before we were married but certainly yes it would have been before we had this initial, very early genetic counselling around having children and what that might mean.

And for an X chromosome it was, you can’t pass it on if you are a man. Again that was as far as the research had gone at that time. I think some of these more, more unusual variants were not necessarily identified at that point. And it was a. I think some sort of case that if we had, had had girls there was, they would be carriers as I understand it. And I think, rightly or wrongly we took the view that by the time if we had a girl by the time that she had reached her 50 or 60s the idea was quite, I think quite strongly, that medical science would have moved to a degree that there may be less of an impact on their life than there would have been on, on mine as a man with a more severe condition. It was a view which as it happened two boys and the issue for us ends with me.

I tried to do different things. I mean, I would – I would – When I look back, I was still trying to do some activities. So I used to go – I was still rock-climbing [laughing]. You know – mental, when I think about it, but. I’d taken up rock-climbing with some friends of mine in my early twenties. And I was determined not to stop. So I couldn’t, I couldn’t forward-plan, so I had a couple of friends who would go rock-climbing. I’d aim to go with them. Sometimes I could, sometimes I couldn’t, depended how I felt. But when I look back, I was really grateful, because my friends weren’t overly sympathetic. My friends would just take the mickey. Which was far better than having lots of hand-wringing and people, you know, overly sympathetic. So yeah, so my friends would just rib me about it. I remember [laugh], I remember once I’d go halfway up a cliff face, I felt nauseous. My friends were just laughing. It was like, “Oh, here he goes again.” Which was exactly what I needed. Because I just needed people to be normal. And yeah, you don’t want – well, I didn’t want people being overly concerned or, you know, worrying about me. I just wanted my normal life.

And so what I’d do would be, I would dialyse before we set off. I’d tape all my catheter up, to make sure it was pretty stable. And then – we’d go rock-climbing quite locally. We wouldn’t go too far. And if we were gonna go out for the day, I’d just take a, like a dialysis fluid with me, and then stick it on the roof of the car. I’ve never told my nurse this, because she would have freaked. But just stick the dialysis bag on the top of the car. Dialyse cold. Usually you warm dialysis fluid up, so it’s like body temperature before you put it in. But it’s cold when you put it in and you haven’t warmed it up, you do know it. But it was that, or stay at home. So I wasn’t gonna stay at home. So yeah, just dialyse in the car, and then go and do some more climbing, and then go home.

Oh it was, it was fantastic, and my friends were fantastic about it as well. They were all really excited that Paddy had found, you know, this new gadget. And honestly I remember my eight year old self being really excited about it cos they’re sort of a novelty. You don’t see many kids wearing hearing aids these days and my eight year old self, I think really enjoyed it. He was, he was quite proud of the fact that he was unique in this way.

So, your friends reacted very positively?

My friends were really great actually, they were helpful and stuff like when you’re in a group right, it’s very, very hard as a person with hearing aids because you can’t really focus on multiple people, you have to, you know be very aware of who’s speaking; you have to look at them and you have to read their lips. My friends were absolutely ready to help me with that you know stand in a circle so I could see everyone that sort of thing, it was great.

I think friends now, as I’ve got older, and they’ve got older, they’re more – they’re more listening, more understanding, than when I was a teenager. You know? They seem, they appear to be more caring, and more considerate. You know? But, you know, I have friends that say, “Oh, how are you doing?” And I’ll say, “I’m fine, don’t worry about it, don’t worry about it.” “I haven’t heard from you in a while?” I said, “Well I’m still here.” So, I – you know. But as much as they, they, they seem to have an attentive ear, you don’t want to burden them with it. You just want to carry on with your normal life, you know?

But at the same time, it is a reassurance that they do ask.