A bit of a drag at first, but it’s surprising what you get used to. You know, you have to accept it. You know, I did go through lots of depression. That’s to be expected. They were crucial parts in my young, you know – crucial time. Working, going out. And I just couldn’t do it; I just tended to isolate myself. You know? Not consciously, but just I couldn’t be bothered. Sort of like the seriousness attached to the illness, made me grow up quick. You know? The reality of it all.

Yeah. Yeah, I had no time for little problems or things like that. I had my own stuff to deal with. And, you know, luckily had a good family to support me. Yeah.

Mary: But when you’ve got an illness, that risk factor is greater.

Even more so, yeah. Yeah I think so.

Because again, you get crunch points in your life, like divorce or whatever it is, if you get made redundant – I don’t know, whatever, where people need that additional support.

Mary: He wasn’t

Karen: – at work, and everything that was – that were the first thing

Mary: Yeah. I think everything piling on top of him.

Karen: The tribunal at work was the first thing really that started the whole process of things going downhill.

Mary: Yeah.

Philip: Yeah.

Mary: Yeah.

Karen: Because of all the pressure that he was under.

Philip: Yeah.

Karen: And the worry, that – you know – that he had to keep bringing the money in. And at that time there was a recession anyway, so he was struggling to get work, wasn’t he.

Mary: Yeah.

Philip: Well they did, they did – they did tell him, when he went to see the solicitor at the start, the solicitor told him that he’d be better off not going to work. So from then on, he didn’t go to work. He stayed on the sick. Now I was with him when he said it, so I know definitely the solicitor told him it. Now the solicitor denied it, at the end. But he did. I mean, I was there when he told him. And that twelve months off work didn’t do him any good, did it.

Mary: Because then you’ve got lots of time to think, haven’t you.

Philip: He’s thinking, yeah.

Mary: You’re thinking about things, and your life, and didn’t he, really.

Karen: He definitely went down. He kind of then at that point, he started really getting

Mary: Into himself. He didn’t bother with people.

Philip: Mmm. Yeah. He, he seemed to dwell on things.

Karen: Yeah, dwell on

Philip: And like read more into things than what was actually there.

So was he quite depressed then, or?

Mary: Well he must have been, yeah. But we didn’t realise that, but he must have been. You couldn’t really – and I used to go every day, because I looked after the children, so they could both work.

Philip: Well there are different types of depression.

Karen: Towards the end, when you look back now, when you look at the symptoms of depression

Philip: Oh, it’s obvious now, yeah.

Karen: – he was in a deep, deep depression. Because he actually was – he was having psychotic symptoms. He was imagining things. But we again, we’d never been – I’d never have been in contact with anybody with depression, so I had no idea. My Mum and Dad didn’t, we just thought things weren’t going right for him, and he was being awkward sometimes, didn’t we.

Mary: Yeah. Seeing his symptoms

Karen: But if you look at the

Philip: I don’t think he was that bad as imagining things, what he was doing is reading more into situations than what was actually there.

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.

My cousin, my Dad’s sister’s boy, his kidneys failed when he was in his twenties. But he didn’t cope very well at all. He was – I think because he was so young, as well. You know, really young. Didn’t like it, hated it, felt as if his life was ruined, and just really, really sad. And he died when he was 42, I think. He ended up turning to drugs. Because he was so depressed. Just felt as if he had no life, because he was just on the machine, or on his bed. And that’s another thing that they don’t tell you, that – what it actually does to the person. I think because my, my Dad was really good, we had a – obviously my Mum, my Dad, we had the three kids, but we’d a really good family as well, and really good support network. So did my cousin. You know? But everybody’s different, and he just dealt with it differently, and he – he just did not cope. And he took the wrong path, unfortunately, and unfortunately we lost him at a really, really young age. Because, and that’s what it was. It was just because – and my, my aunt blamed herself as well, because like she was the exact same as my Dad, she thought it was like her fault because her, her boy wasn’t well. So I think things like that worry me as well, I worry about that, I worry about my son, I worry about what’s going to happen to him, how his life’s going. But I also – I’m worried, but I’m also very, very positive, because I know how much things have changed. I know that since, you know, it all first started in our family nearly thirty years ago – god, that seems forever – that things have massively changed.

They’re growing kidneys and all sorts of stuff now, so hopefully by the time that he’s older, when he – if he does need. It says on the enalapril that he’s on, it’s actually been known to stop kidney failure. And we’ve looked into all sorts. And I think it’s a good thing, and it’s a bad thing. Doctor says this is this, this is that, and you go ‘right, okay. Home, straight away, google. And everybody does it. And it just fills your head full of stuff. And you’re going to all these forums and websites and for weeks and weeks and weeks after then, I was just crying all the time, and just looking at all these stories of all these people, and – and I was thinking of the negatives, and focusing on that, rather than thinking about all the good stories and all the, you know, how people are still here, whereas years ago if that happened they wouldn’t be here. You know, the person would have died. Whereas now it’s just completely different.

Again I worked throughout that time and I think one of the important things for us as a family and for dealing with this disease is that you don’t get personified by it, that you continue to have a life and a career and everything else outside of the, the illness. And it is possible to do that. There’s no question in my mind that with the dialysis techniques these days and a transplant it, it’s absolutely possible to live a normal life although, you know you have to do, manage it much more carefully.

I think if you can, if you can exercise normality to the extent that it’s possible to do so it makes your life a lot easier. I’ve never found it particularly useful to be characterised by this disease.

Karen: Well you feel guilty, don’t you, that you’re alright.

Mary: Well you do, but – you do, but But you try and help them.

Karen: You try and help them, but.

Philip: There’s nothing you can do, is there.

Mary: There’s nothing you can really do, is there. Well, there wasn’t. We didn’t know, I didn’t know about Alports. But there’s nothing you can say, because you’re not sick, are you.

Karen: But you do, you are more protective of them.

Philip: Yeah.

Karen: I was really protective of him, and I know Mum and Dad were. Because you know it’s just a natural thing to do, isn’t it. You over-compensate because you know what they’re going through. But he wasn’t the type of person that wanted people to feel sorry for him, was he.

Mary: Well not really, no. But I think in the end, he’d –

Karen: But it seemed that everything that kind of could go wrong, went wrong with him.

Mary: Everything, well that’s it.

Karen: But none of us. We were kind of all alright. And it did impact – you know – he was an intelligent lad, wasn’t he.

Mary: Oh, yeah.

Philip: Oh, yeah.

Karen: He could have – you know – he could have gone on and done something great. And he did do good things with his life, didn’t he.

Mary: Oh, yeah.

Karen: But you do wonder, you know, if he hadn’t been deaf would he have done differently at school? Could he have chosen a different, like a different career path.

Mary: I think – yeah.

Karen: But like I say, his character, because of what he had to go through, did change. And he became a stronger character because of it, didn’t he.

Philip: Never stopped him doing anything, you know.

Mary: Yeah. Used to go camping, and take the children camping and things. Yeah. He were quite strong-minded, weren’t he, really.

Karen: Yeah, that’s what I’m saying. You know, other people may not have done what he did to the extent that he did, but he was that type of character. If he wanted to do something

Mary: He did it.

Karen: – you could argue with him ’til you were blue in the face but he’d still do it, wouldn’t he.

Philip: Mmm.

Mary: Mmm, yeah. So that’s a nice thing. And it’s nice that we really had him in our life, isn’t it. Yeah.

Karen: I remember that time when he went out and got drunk when he were on dialysis, and my Mum had to give him dialysis [laughing].

Mary: And his friends used to come, and it’s just nice isn’t it, really, that they can do these things.

Karen: But that’s just a teenager, isn’t it, you know – 17, 18.

Mary: And he never moaned then, did he. He never moaned with his dialysis, really.

Karen: He moaned about the food. I remember him moaning. And we all said “God, I don’t know how you’re gonna eat some of that” [laughing]. The pasta, and is just looked like

Mary: What you had to do, you’d to like – you know if you had potatoes, you’d to boil the potassium out of them first, to get rid of it. And so he could eat the stuff. And then it weren’t going into his system.

Karen: It’d be easier for somebody now, having to have that kind of diet, because people having different diets is more widespread.

But then, it was like a rarity, wasn’t it.

Paul: It is a case of, you know

Christine: – for you. Yeah.

Paul: – that defence mechanism of – I’ve got anger against the whole disease. I don’t like it, I don’t want it, I’ve never wanted it. I hate it. But I direct that anger by, you know, keeping it away from our life as much as possible. Obviously it has an impact, and it’s going to, and sometimes you can’t keep it out. But when you can, try and – try and keep it away as much as possible.

That’s what I do. That’s just my way of dealing with it.

Christine: Well life at home went on pretty much normal. Because it wasn’t – to a degree, wasn’t under our noses, was it.

Paul: But then the effects of dialysis. I would come home, I know I would be tired. I’d be really hungry. So I’d want something to eat straight away. That’s the only time I ever ate, was straight after dialysis. I didn’t have an appetite the rest of the time. I’d only eat straight after that. I’d have a big meal, and then I’d go to bed. Because I’d dialyse – I’d leave work about half-two, three o’clock. I’d get to dialysis about four. Get on the machine, do four hours. Probably back home by eight. Have something to eat. Straight to bed. Sleep. Get up in the morning, feel a bit more refreshed. And then go off to work. It kind of – yeah, that was just the way of dealing with it, wasn’t it.

Christine: Yeah, I suppose everybody deals with it very differently, and what suits one family might not suit another.

Christine: I mean, there’s times when it has got you down, because – you know – it’s the nature of the, how it is, but.

Paul: Yeah

Christine: Does depend on what sort of person you are, and how you deal with it really, and what – how you deal with it as a family.

Paul: I think the younger you are. Coming from my point of view, I’ve always lived with it. So I can remember being in hospital at like 5, 6 years old. And I can remember my Mum and Dad going off, and the lifts closing, and – you know – I was there on my own, or with my brother, or whatever. And I had to get on with it, and had to deal with it. And I can remember that many a time, being left in the children’s ward at all sorts of different ages. And just seeing your parents walk over the bridge, out towards London Bridge.

Christine: To go home, yeah. Yeah.

Paul: Yeah. And you couldn’t. And you had to just turn around and get through the night. Or couple of days, or weeks, or whatever it was you were in. So I think I built up a-. A very hard person, haven’t I.

Christine: Well it’s made you the person you are, hasn’t it. It’s made you the person you are, I wouldn’t say hard. But you have to deal with things don’t you.

Paul: Cold-hearted beep, you would say [Laughing].

Christine: No, no. You have to build up your own defences, don’t you, against a horrible type of illness, any type of illness. So, you know, you have to build up barriers to stop yourself getting overcome by it all, or hurt by it all. And that’s just – it’s just made you who you are, really. In some respects, that can be a really good thing. You know? Out of bad does come good. You know, so it’s made you deal with things differently, that’s all.

Paul: Yeah. I don’t know whether I’d have been stronger if I hadn’t have had all the problems, or what. I don’t know. But I am – but I do put up a big fight about it.

Christine: And it was different when you were younger. So if you’re a person, you know – if you’re young in years, you have got more energy and perhaps you shrug off some things, don’t you. But as you get older, it’s not so easy, I suppose, if you’re going into.

Paul: It’s certainly got harder the older I’ve got, to deal with things. And I think that’s a case of you know what’s coming. You know what you’ve got to go through. Like this third transplant was – don’t want to put people off having a transplant because I’d do it every time, but it was hell and back. It was, it wasn’t good. But you get through it, and you come out the other side. But because I knew what was coming, I was dreading the call. As much as I was hoping for one, I was dreading it at the same time. I knew what I had to go through, what was coming up.

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.”

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?

It’s a necessity really, you know? I mean, I can’t remember when I first started dialysis if there was a renal psychiatrist or counsellor back then, I can’t remember. I mean, we’re talking ’85, I started dialysis, you know, dialysis. But yes, I feel as though it did me – it was beneficial, you know? And I’d had, you know , when I’d hit all – you know – all-time lows, I’d seek counselling somewhere else as well, but I feel between the comparison of the two, I think the renal one’s more compassionate.

Guilt is definitely the thing with Alports that they don’t tell you about. They don’t tell you that you’re gonna feel this way. And I don’t think even – like when I first found out about my son, then they offer you all this help and that, I just didn’t want to speak to anybody. Because I just they don’t know anything, they’re all these professionals who are telling me all this stuff, and they don’t actually know how I’m feeling. They don’t know what it feels like. And that’s when I was like – I want to start talking to other people who’ve got similar kind of things, and. And that’s how, you know, that I joined the Alports thing. And, you know, I like – I started doing stuff with Kidney Kids, and because the other people who have actually gone through the same kind of things as you, you don’t feel so alone, you realise that there’s people who are much worse off than you. We went to that weekend and there were lots of kids there, and lots of them are on dialysis, lots of the kids – you know – had bags and different things, and getting fed through tubes and all sorts. And I was just like, just realised how lucky we actually are. He’s running about playing, and – you know – “Can we go into the swimming pool.” And, you know, just drinking a bottle of juice, no bother. And, you know, I could hear this one guy saying to his wee girl that he’s, going “No, that’s true, you’ve had 175ml, you know, you can’t drink any more just now,” kind of thing. And I’m thinking, you know – I don’t have that problem yet. So just think about what I have got, rather than being worried about, you know, what could happen, because it’s not happened yet, so just enjoy it while it’s there. So now I just, we’ve just got on with life. Nothing stops us. My wee one’s mad, he’s into everything. Goes to football, goes to swimming, goes to all the sports, does everything that – you know – all his wee friends do. And you wouldn’t notice any difference between them, and that’s the way I want it to be. Just because he’s got a genetic condition doesn’t mean that he’s different.

I got a lot of anxiety after the transplant. The doctors tell you numbers; they give you averages for what, how long a kidney should last once it’s been transplanted, and they tell you know the average is five years which seems like a really short amount of time. But then, so you kind of fixate on how long the kidney’s going to last you know, and looking for symptoms and, you know really worrying about how long you’ve got before you’ve got to start it all again and wondering whether or not putting somebody else through a transplant like my friend; him giving me a kidney, if it’s worth his pain or his trouble, and it’s not until I started talking to people in similar situations that I’ve met. I mean, last year from the transplant sports team went to celebrate a thirtieth anniversary of a kidney with someone. So, it’s continuously being exposed to things like that that shows you -. Some of the doctors give you averages; it’s just based on averages for everyone you know, whatever age, whatever condition the person’s in before the operation, whatever condition the kidney’s in. You don’t know how they have looked after themselves so they just give you the raw information. So, you know I look after myself as best I can; I eat the right things, I take my tablets and I’m meeting other people that do the same thing that have had kidneys for a very long time it gives you a lot of hope that, that that would be the same for me, and in that regard I don’t really worry so much anymore.