And I was off the antibiotics by then as far as I can remember. But then I was followed up fairly regularly, pretty, pretty frequently at [hospital name] hospital by the paedia -, paediatrician there with hearing tests and paediatric appointments, and I think probably several times a year initially and then it was cut back eventually to annually. And I stayed -, I was looked after by the paediatric department for a little bit longer than usual just because it was convenient I think, and then I was transferred to [hospital] care for routine follow-up again and that probably was when I was about sixteen I should think.

OK

And the care at that stage did change. I do remember going -, I think my mum came with me to the first appointment at [the hospital], and having been talked to by a very nice doctor at [the hospital] who had kind of, you know told us that the situation was that I was a carrier of Alports; that there was never anything to worry about. There was -, I think the doctor at [the hospital] that made some statement along the lines of, “You -, there is no reason why you couldn’t go plenty more years before your kidneys start to failure.” Certainly that was the interpretation that we, we got from it. I don’t think she quite said that, and I’m certain obviously she certainly didn’t mean it, but that was certainly -, there was a little bit of worry induced by that, and I remember my mum particularly being a little bit annoyed about that because she was sort of saying, “Well what’s -, you know what’s all this, this is the first we’ve heard of there actually potentially being any kind of problem at all?” And they -, the particular problem still, as far as I’m aware. As far as my care is concerned I don’t have regular hearing tests anymore unless I ask for them. I do have annual follow-up at [the hospital], and they did actually discharge me for a bit and then I asked to be just looked after again just to keep an eye on me, and as much for the sake of my children just to kind of maintain a contact at [the hospital] as well, although the children are looked after separately. So I am still followed up annually at [the hospital] with bloods and urine tests and hypertension care of course as well because I gather that is probably linked to the Alports; I do have hypertension and that’s managed by my GP, but overseen by [the hospital].

Well, apart from every time we go to [the hospital] she sees a different consultant that hasn’t got a clue about anything. It’s fine. At the moment it’s okay, because I’ve still got that link with the nephrology at [the hospital]. When [my son]’s an adult and moves presumably to [the hospital], I don’t know what – because they don’t really have an awful lot of knowledge. They – all they know is they can’t sign her off. Because she surprised [laugh] – one of the questions she has asked once, “Well, why don’t they sign me off? All they do – I have to do, go with a urine sample, have to have my blood tests, three pots of blood, before – a month before I go, so they can check. They do my blood. I do a urine sample. And they do my blood pressure. And that’s it. And they always say well we’ll see you again in another year. If they’re not going to do anything, why don’t they just sign me off?” And I said “Because they have to keep checking that it is all still plodding along in the right way.”

And I guess it must be a relief though, hearing that everything is –

Oh yeah, absolutely. Yeah. Although they were really good, because her bloods had dropped, and she had a lot of trouble with her white blood cells. And they actually gave her some blood. She went in and they gave her a couple of pints of blood, to boost. Because obviously she was losing blood, as well, through her periods all the time.

And that’s quite the nice thing actually, that – you know – although she said “What’s the point? Just discharge me and take me off the books” Sort of thing. But actually it’s quite nice going and having the blood tests, knowing that microscopically – and absolutely microscopically – your kidney function has dropped really, really microscopically, you wouldn’t know, but that it’s still okay.
So we know that it is having an effect, but it’s so microscopic – so small – that it’s nothing to worry about. But someone is checking that each year, to make sure that it doesn’t suddenly become a problem with the kidney function.

It’s once – so it’s once a year. Obviously I used to attend the hospital in [place] and saw the sort of same team of doctors there.

And then when I relocated to London, we used – where we used to live was actually right next to [university], which was just lucky [laughs] that we were next to such a good hospital. So I started attending the renal clinic there. And actually I still go, because I really like the consultant there, and I don’t really want to change out here.

And it’s easy for me to get there.

Oh, so you go still back there every year?

Yeah. Oh I just get the train straight there, it’s easy. So, and I said to them like “Please don’t make me move hospital” [laughs]. And they were like “Well as long as you’re okay with it, it’s fine.”

Oh, that’s good.

So they’re a really, really good team there as well. But the appointment, I mean, it’s pretty basic. You know, it’s a urine sample, a blood test, check your weight, have a chat about how things are.

Well I remember thinking, ‘I’m a bit of a fraud and I were taking up like an appointment that somebody else probably could be, you know, using. Because I felt fine and I’ve never had any symptoms. And I do remember saying to the consultant once, “Is there any need for me to keep coming, because I just feel like I’m taking up your time?” And he did actually say, “No”. Because if anything did happen and I suddenly became ill, because I go to the hospital every year like, my work colleagues and everything know that I go to the hospital, it would if, it would spark somebody’s memory and think ‘oh, maybe she’s ill because of her kidneys. But he said if I never went, then people would forget, and it would not be brought to their attention. So they did. And I’m sort of glad that they did keep me going now, because it was that that sort of, kidneys was in my, you know, my mind when my little boy went deaf, sort of thing. So it was right to do that, really. Yeah.

How did you feel about the information that she [the nephrologist] gave you? And what did you think about the care, and things like that?

They’re lovely. But you always feel – you know, it’s a long trip up there. And they often have a scan, they’ll have a blood test, you’ll be in with the consultant for about ten minutes, if that. They check the blood pressure. Nothing else to tell. And you kind of feel ‘I’ve come all this way and we’ve been waiting an hour to see you, and there’s nothing else to tell me. Which in a way is good, there’s no changes to their health, and everything’s carrying on normally. But are they going to be? And I suppose for any health condition, nobody knows, knows that.

I don’t remember being told much about it, other than I just had to go for check-ups to have my blood pressure and my kidney function checked on like at least a yearly basis.

And how did you feel at the time, hearing that?

When I got into my older teens I really didn’t want to do that any more, I was fed up of it. And I suppose because I didn’t really know any information about it, I wanted to stop. And I think I managed to postpone one appointment but then [laughing] still continued going. But I think then as I got older again, I just realised – you know – best to go get it checked.

When you said when you got to your older teens, why was that then? Was that just because-

I think because I’d gone off to university. So like, and didn’t really want that hanging over me, I just wanted to like think everything was fine.

Yeah.

Yeah. But then one of my consultants once said to me “Don’t ever let it affect the way you live your life.” So I haven’t, now [laughing]. Yeah.