I don’t think it is, really. Because it’s just – you know – it’s not, I don’t want it to become a lifestyle, it’s just a condition, sort of thing. I don’t want it to be, you know. It’s just for me to get on with, really. You know, you see people on some things, and they wear t-shirts, and like ‘oh, look at me, I’ve got a kidney thing. And I’m like no, I don’t tell many people about it, and I don’t – you know – apart from if I’ve got to – say about hospital visitor or what have you, I don’t talk to my family about it either, it’s just – you know. Just there, and that’s it. It’s not – don’t want it to be something to focus on though, you know? Don’t want it to define me. You know, I mean, I see people and they’re like – a woman said to me the other day at the bus stop, she said “Why have you got a bus pass? You’re not 65.” I said, no. I said “Mine’s a disability one.” “Well, you’re not disabled.” I was like “I am, I’m on kidney dialysis.” She went “Well, you don’t look ill.” And I was like “Well I do apologise about that” [laugh]. You know, but it’s right, because I don’t tell many people, because you don’t look ill about it, so people just tend to not take you seriously anyway when you talk about things. But I don’t want to discuss it really. Not many people know. My friends from work knew. You know, close friends, you know, but many people don’t know.

We take a day at a time. And when I speak to people, they say “Oh, look at him, and look at you, you wouldn’t really know that there’s anything wrong.” And I’m like “Yeah, because things are good just now.” I says, “But at one point things won’t be good.” Especially obviously – I’m not really trying to think of it myself, it’s my son I’m more thinking about it that way, that you know, it could be just one day that – you know – he could take a really serious viral infection that affects his kidneys. Or as we know obviously the process when he’s getting his bloods taken, that the kidney function is dropping and dropping, then eventually that is how things are gonna go. I need to look into the future, because I’m that type of person, that I need to know what – what will happen. How is things gonna go?

And what about yourself? In terms of symptoms? So you said about your kidney function?

Absolutely fine. I don’t feel any different. Unless there’s – there’s some things that I don’t know about, that – you know. But I do. Because my cousin obviously had said to me, you know, “And how are you feeling, and things like that?” And I was like “I don’t really feel any different, to be honest.” I says “Perhaps maybe when I get to a certain level, then I think things start to happen to you, that then indicate that you are starting to go through failure.” Like really tired, and – you know – losing weight drastically, and things like that. I’ve heard that from obviously someone that was in the hospital next to me, when I was getting a biopsy. She just said “You know, just – I just took unwell.” She says, and lost a lot of weight, and couldn’t recover from what she thought was a viral, and. And it actually was her kidneys were failing. But apart from – no, I feel okay. You know? I really can’t – and I think my son does as well, generally.

The only difference I suppose between me and someone who didn’t have Alports was that I had hearing problems which people have hearing problems anyway for other reasons. And I had to go to the hospital regularly for check-ups and, and blood tests and I suppose the main symptom I got when I was when my kidneys might have been struggling slightly was if I had a cold or sore throat or something, that would really have an effect on my kidneys and so passing urine was difficult and painful so that was probably the only real symptom kidney wise.

We didn’t talk about it much, like I say, because there wasn’t much to talk about. But as we’ve got older that had a real big impact on me, in a positive way, because – unfortunately for him, but because he was older, he’d go through everything first. So he was on dialysis about four years before I was. And so every procedure that he had, I was very likely to have. But I’d already seen him go through it. So I was quite clear about what I was going to be having, and what it was going to be like, and what the options were going to be. So I think that really helped me, because I didn’t have to give it that much thought, because it was kind of presented to me with somebody else doing it first. So we talked about it at that stage. So I remember when my brother went on dialysis in the first place, he went on the CAPD as well. He went on a slightly different version, he was on the overnight one. You know, whereas I went onto – doing it four times a day. Yeah. But yeah, that was – that was when we started to talk about it much more, because it was then having a real significant impact on his and then my life. So, so yeah, that was quite different for us. And it was the same thing – he had a transplant about three years before me. So then I saw what happened when you have a transplant, and what the procedure is, and how that all works. So, so yeah, so it was – I was kind of – I feel at least kind of fortunate that it was still part of my normality, because I’d just seen it all happen a few years in advance before it happened to me. So there was none of it that came as a big shock, or was like particularly surprising. The day to day aspects, we did talk about it a bit, about how it makes you feel and so on. But there’s only so much – it was quite boring to talk about it a lot [laughing]. But it was handy to have to someone that understood exactly what, what it was like to go through it. But , but again, as I say, it’s not something that we’ve spent a great deal of time talking about. It would come up occasionally in conversation, but it was just part of normal life, so we talked about other things, you know, what was on the TV or anything else really.

It’s useful. It’s useful. There are some families who, where the pattern of disease obviously seems to be quite severe. So the hearing loss comes on quite early, and the kidney disease comes on quite early. Nowadays we can quite often track that down to a severe mutation. And in other families, the disease tends to be quite mild. The difficulty is that for any individual person, they cannot be sure that they’re going to follow the family pattern. So although they may be – if you come from a family with severe disease, although you’re more likely to get severe disease, there are some lucky people in those families who get very mild disease. And vice versa. There are some people in families that tend to be mild, who get very early disease. And we often can’t fully explain yet why we see that amount of variation.