Jago: I think we know that it’s not going to just suddenly happen. The kidneys’ function is just basically decreasing and decreasing, so it’s able to do less things for your body. So cleaning the blood more effectively, and controlling your salts, and stuff like that. Bringing back water into your body. All these things that is going to happen less effectively, and might even just stop happening altogether. Which is then when you have to have your transplant. Because you need all these things to either live, or live healthily. So I think that’s what we understand. But then we can’t – even doctors don’t know when it’s gonna happen. It’s impossible to predict, because it’s entirely random. But all that we know is that we can put it off for as long as we can, by remembering to take our pills, by being fit, by eating well. That’s kind of our understanding of the kidney failure.

Wilf: It’s a rare disease. There’s not much info on it. It is rare. So there’s not – well, there is understanding of it, but not as much as you would like, I guess.

How does that feel at the moment for you?

A long time [laughs] and its one year eight months, and my uncle got his at two year nine months. The average waiting is three and a half years now because there’s been a drop in donations. In the last year they’ve had the first drop since kind of donations started. So, they’re trying to, you know campaign to get more awareness. And Wales have actually just gone in the opt-out system where you have to opt-out if you don’t want your, to donate rather than say you want to donate yeah. So, they’ve just opted out, so hopefully England will come in line with that. And yeah so there’s no live donation for me. I don’t agree with live donation anyway so I have to have a, you know, somebody who’s yeah died basically. And there’s two types that you can have. There’s ones that are still the heart’s beating, so on life support; and then there’s ones that are, their heart’s stopped – same long term outcome, but different short term. So, the heart stopped one can take about a month for it to actually start, so you would continue on dialysis until it actually started. But obviously you know the heart beating one, that’s a better one to have. Well live would be the ultimate because, you know you’re getting a kidney immediately from one person to another.

You have to be in within an hour; so I have to be within an hour of the hospital all the time. So, if I went abroad I would have to come off the transplant list; I would have to suspend myself while I’m abroad. So, I’ve not been on any kind of holiday or anything before that. Even if you went kind of three hours away from home you would have to notify the hospital and you wouldn’t be getting a transplant if it came up while you were that far away from home. So, it does kind of, it does restrict you to stay in, in your immediate area, but obviously you don’t want to suspend yourself because a kidney might come up in that time and you miss it you know. And I think it’s important to say though that a kidney transplant’s not a cure. People do think that it is a cure but it’s not; it’s just another treatment. It basically takes you off dialysis but you’ve still got all the side-effects that you’ve developed while you’ve got kidney disease at the same time, plus you go on immunosuppressant drugs so you’re going to pick up every kind of infection. So, it’s not a cure but it is better than being on dialysis; it just frees you up. You know I’m not going to be at the hospital three times a week, every week you know. Even Christmas doesn’t count you know – dialysis still goes on, and it would just give me that break from dialysis. And also it can fail; you can reject it; there is lots of pitfalls. So, I’m trying not to get, not to pin all my hopes on getting a transplant because it, a lot can go wrong you know. A lot can go right, I mean there’s a guy just celebrated his fortieth anniversary with a, with a kidney which is like the longest transplant in the history of kidney transplants. Lots of people live in twenty years but the average is eight. So, within eight years you’re going to be back on dialysis you know in theory, so it’s not a cure; it is just another treatment form so yeah.

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].

Is that because of the Alports in the back of your mind? Or is that –

It’s kind of like acted as sort of a catalyst to it, I think. It’s kind of just been like ‘well, this is gonna catch up with me eventually, so might as well do the things I want to do before I’m sort of not able to for a while, if I’m on dialysis or if I’m – have a transplant’, and things like that.

Oh yes in the sense there is no comparison. I. it was equally dramatic or traumatic, no, dramatic is a better word. I just remember being in a business meeting at work one afternoon for 4 o’clock said, Robin we’ve got a transplant for you. Can you get in here? And [ah] I just remember around to people in the middle of the meeting and saying, I’m sorry I’ve got to go and have a transplant. There sort of was complete silence. I said, Well I think it’s probably a good reason for calling this meeting early then don’t you?

[Laugh]

And so off I toddled and so I remember just going from the office to the hospital like 4 o’clock in the afternoon and doing the transplant, phoning my wife to say, Transplant’s on. I’m on my way. That caused a complete scatter because my wife and two – two young sons at school. And I think I was in hospital for a couple of weeks probably, probably less than that. I don’t, I don’t remember exactly but it certainly was none of the drama, none of the trauma the second time around. That much I certainly recollect being up and about and kidney started to work after about a week. It was a few days before it got going. One thing you particularly are aware of it that and the various drugs accentuate this is that your emotions are thrown all over the place when this is all going on. It’s partly a result of the drugs. It’s partly a result of what’s going on. Physically it’s partly, exactly what you’re undergoing anyway but your emotions go up and down, up and down. I mean to extremes because of your body, the whole, everything in your body is changing, all your chemistry levels are changing in your body. You know, your emotions are completely being thrown around because of all of that. And, and the slightest change in your physical condition can cause you to think, Oh this is rejecting. It’s not working. And it can, it’s a very, it can take some handling.

And that was like, something like Wednesday 6th February. And the week, the weekend before we went out on the Friday night, actually to a Korfball sports social event, and we were out quite late [laughing]. And got back on Friday night, like one or two in the morning, went to bed. And about four o’clock in the morning the phone rang, to say there was a transplant available. My husband answered it because the phone was by his side of the bed, and he put the phone down. And then he had dial – is it 1571 in those days? To check who called you?

Because he wasn’t sure whether he’d actually dreamt it or not [laughing]. And then we both kind of got up. We live round the corner from [hospital name], sort of most of the time. We kind of got up and went to the hospital because they wanted to see us. Then we got there and we suddenly thought – suddenly we thought “Oh my gosh, we were out really late last night.” Like we probably shouldn’t have driven, or my husband probably shouldn’t have driven. And I then, I then had to – combination with the earlier story makes me sound like I was an alcoholic or whatever [laughing]. But I then remember having to say to the people at the hospital “Can you still have a transplant – because we had quite a lot to drink” [laughing]. That’s my recollection of it. But then actually we actually had to sit around for quite a long time, because they – they basically then – although your details were on the transplant list, they basically retest you. I presume to make sure nothing’s changed, for whatever reason, and everything’s still okay. So then by the time they take your blood and it goes off and it’s tested, and it wasn’t until like five o’clock that evening anyway, in the end.

And so the transplant was, the testing was all rushed through because my donor lived in another country and he had to come over and so they managed to get that all done quite quickly and we were fortunate that a space became available for the transplant quite early on. So, it was supposed to be about a year I think they would have taken but yeah only, only seven months so yeah.

Well it’s just the timeframe that it all happened really. By the time he could be arranged to come over and get tested; it usually takes about three months I think, but with him they managed to get all the tests done in the space of a week.

Right

They gave us a window for, not sure when it was now, sometime in August I think and a space became available in May, so yeah it all kind of jumped forward, it was all very last minute but it, yeah but I’m fortunate again that I had a live donor. I’ve known people that are on dialysis for years, like many, many years that weren’t fortunate enough to find a match.

How did you feel with the run up to the transplantation?

I, honestly I started to have doubts but only when my, only where my daughter was concerned. My grandfather died when my mum was very young and she grew up never really knowing him, and my daughter at the time was, you know she was one year old. So, I had the same fear that if there’s something wrong with the operation that she might grow up never knowing me.

And but then you kind of look at the other side of things where I couldn’t stand dialysis forever and you can’t have a like a normal life on haemodialysis really. So, it was the better option and yeah there was fear, but at the same time I was generally too tired to really let that kind of affect me and I’m glad for that I think cos once I had the operation immediately my mind kind of came alive again.

How did you feel?

It was mixed emotions. It’s funny. Because you – I’d been on the waiting list for three and a half years. And you always had to have your phone on you, and – you’d think you would, I mean. Yeah. So I just, it was – it was mixed emotions. And I think my first emotion, I was relieved. And then, and then came the sorrow for the family who’ve just lost somebody that they loved. And, and then there was – nervousness started to kick in as well. So, basically just had to put a bag together and rush down to [hospital], as they don’t do the transplants here in [local hospital].

Yeah. I didn’t feel excited about having the transplant itself. The first emotion was feeling for the family. And I remember actually being admitted to the ward, and the surgeon coming to tell me the, the situation that it was coming from, a male in his twenties. And I remember saying to her how I just feel for the family, and – you know – I’d like to write to them one day to thank them. And she was quite shocked that I was feeling like that. She said most patients are talking about themselves and how excited they are, that they’re going to get this transplant. But I’m sure there are other people who’ve felt the same as me, they maybe just haven’t said it to the, to the surgeon. But it’s – yeah, mixed emotions. I remember when we were driving down to [hospital], everybody being happy for me, and phoning me, and-. But at the same time I didn’t allow myself to feel too happy because I knew there was still a lot that could go wrong. For example, when I was actually in the, the ward after the transplant, I was sharing a room with other transplant patients. So some were liver, kidney. And some of them were saying how that was their third or fourth time that they’d been called for a transplant, but it – you know – for whatever reason, it wasn’t suitable. Or they’d perhaps had a bit of a cold, and were sent home. So I was aware of what could go wrong, so I wouldn’t allow myself to, to think too far ahead, and just take each step as it comes.

So, what happened then? Can you tell me?

Yeah. So when we arrived in [hospital], we was taken through to the ward. And they had to do various tests to make sure that I was fit enough to undergo a major procedure. They took your weight and took your bloods, and sort of various other things, a sample of urine. So I was told everything with that was fine, and that they would have to do various tests on the transplant kidney to make sure it was suitable. So I was – I think we arrived in [hospital] at about 8pm, and I was told that I would be going through to the theatre around about midnight. But in the end, various delays, it happened at six, six in the morning I was taken through to theatre. So I wasn’t worried at all, because I knew I was in capable hands, and as soon as I came out of the theatre, my creatinine, which they – it’s one of the things they measure in your blood, to determine how well your kidneys are functioning – that went, had gone up considerably, just in a matter of hours. And continued to go up and up. Sorry. Down [laughing].

So that started – you could see that –

Yeah, so – so before the transplant it was way up at one thousand two hundred, and I had bloods taken just yesterday, and the creatine was ninety, so.