But when you were on dialysis, you were on a restricted diet, like your potassium, need to watch your potassium intake, and. Which to be honest, I wasn’t too good at. It was [laugh], yeah.

Yeah, can you explain a little bit more about that? What were the recommendations, and how did you find that?

So, yeah. Cut back on cheese and chocolate. No bananas, mushrooms. Potatoes. So if you were making potatoes, you’d be like – or if you, if you were – or baked potatoes, yeah. Cut back on baked potatoes. Because I love baked potatoes. But you’re best to boil them, and then get rid of – parboil them, get rid of the water, and then boil them again. But I was not really following the advice that the dietician gave me.

So you didn’t follow it at all, or?

No, not really. No [laughing].

Was it because that was – it was so restrictive, or? How did you –

Again, like being told about the medication and how important, it was never really explained to me how important it is that you, you know. You could probably, I might have had a longer time before starting dialysis had I realised how important diet restrictions were.

And you mentioned about your support, having a really good network of family, and sort of friends, and you think that’s the main – do you feel like you can sort of talk – do you talk with them about your sort of emotions, and?

To a certain extent. But there was a lot of things that they just wouldn’t understand. So what I tend to do is I’ve joined a forum. Which I log onto, and it’s for people worldwide, and go in, and you can search for a topic and see what other people have said about it. I’ve also met – or not met in person, but there was somebody who added me on Facebook who had read about me on the forum, and she also has Alports. So she got in touch with me to see how I managed, just to find out when I was diagnosed, and – so, she’s not started dialysis yet, but they have said to her that it’s on the cards, so. So yeah, it would be – it’s, so yeah, there are certain things that you can’t really discuss with friends and family. Or you could, but you want to know how other people’s – other people are coping with it, but. You know, so I tend to go onto the forum for that.

And how do you feel? Do you feel like you’re helping other people then, by doing that? And because you’d been supported, and?

Yeah. I was able to write a huge paragraph on everything about it all, you know, and how – how, how old I was when I was diagnosed, and whatnot. And she was concerned about going on holiday, because her husband I think was from [place], and would she still be able to go and visit his family? So I was able to, you know, reassure her. And she did say, you know, “Thanks, it’s been really good, and helped a lot.” So yeah. It’s good to be able to help other people. I’ve also given talks over at the hospital on pre, pre-dialysis talks to – you know – patients who are coming up to the stage where they’re gonna be put on dialysis. And I’ve done an actual exchange in front of them, so they can see what, what happens when they do that.

Yeah, do you feel that – is that something quite important for you to connect with other people who –

Definitely, yeah. Because you, you might know that you’re going to see your GP, your renal consultant next week, but there might be something playing on your mind and you think well, I just want some reassurance that other people have gone through that as well, or had these symptoms, and that it’s nothing to be worried about.

Yeah, do you sort of ask questions about symptoms? What sort of things have you talked with other people about on social media?

When my hair started falling out, that was the one that I went straight onto social media about. And it was quite a relief to find out that I wasn’t the only person that had happened to, and there were others out there that had gone through the same thing. And they hadn’t had it explained to them that this medication, you know, this is a side effect. Because I remember telling, speaking to my GP about it, “My hair’s falling out all of a sudden.” And him saying “Oh yeah, that is a side effect.” Well, it would have been nice to have been made aware of that, so it wasn’t such a shock when it happened. It was just one day in the shower, just chunks of it all coming out. This isn’t normal [laugh].

No, I feel fine. I was quite lucky, I didn’t get as many side effects as some people do. When I was in hospital they gave me seven A4 pieces of paper, so I think that was – there were seven different medications that had side effects that they were addressing. So you had to read about these side effects. And almost every single medication I was put on, one of the side effects mentioned was increased – being emotional. So I was just waiting for the day where I was gonna break down, and I could see in the ward, everybody had their day where they would just sit and cry. And, it’s not happening to me. But it did. There was actually a day, it just – it hit me. You know, my boyfriend had came in and said how everybody was asking for me, and how there had been so much support on, on Facebook. Everybody’s on Facebook these days, and I hadn’t been on the internet. So he, he let me see it. And that’s when it, it just kind of hit me. It’s always when you see that there’s so many people that care, that that’s when it hits you [laugh]. Yeah.

When my hair started falling out, that was the one that I went straight onto social media about. And it was quite a relief to find out that I wasn’t the only person that had happened to, and there were others out there that had gone through the same thing. And they hadn’t had it explained to them that this medication, you know, this is a side effect. Because I remember telling, speaking to my GP about it, “My hair’s falling out all of a sudden.” And him saying “Oh yeah, that is a side effect.” Well, it would have been nice to have been made aware of that, so it wasn’t such a shock when it happened. It was just one day in the shower, just chunks of it all coming out. This isn’t normal [laugh].

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.

Can you explain a bit more about sort of work, and how you managed?

Yeah, so. We did try before the, that I got – before I got the call, to sort of manage my workload in the event that I got a call to go for a transplant. So I had made up a sort of, a folder of ‘this is what I do, this is where you can find this’, and that sort of thing, so they’d be prepared. They say once you have the transplant, you could look to being off work for two to three months. So I was fine to go back after the two months. To be honest, I felt like I could have gone back a lot sooner, but – you know – it’s best just to, to try and relax and take it easy and recover at home. But they’re, they’re really supportive. And I guess it helps that my workplace is based on a hospital site, so I’m literally five minutes away from the renal unit. So yeah, they’re – they’re really supportive. And being a [workplace unit], it’s – you know – they’re, they support it a hundred percent.

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.

And can you say a little bit more about the medication that you took back then? You said you were quite bad about taking it, could you say a little bit more about it?

I think it was just with being, being younger, and not as responsible as I am now. I don’t think I realised the damage that it could do if I didn’t take it regularly. And perhaps maybe had I taken it regularly, I wouldn’t have needed to start dialysis as early as I did. I don’t think it was really explained to me either, how important it was to take the medication. I think if that had been stressed, then I probably would have got into the habit of taking it regularly. Another thing that frustrates me as well, is – might not have helped at all but, when I was younger, before I even knew of anything to do with Alports, I suffered from headaches from time to time. So I’d mentioned to my GP this, and we tried several things – keeping a food diary, that type of thing. But I’d mentioned to them that I take ibuprofen. And then for years I just continued to take ibuprofen, even once I had been diagnosed as having kidney problems. But I wasn’t aware that the ibuprofen shouldn’t be taken if you have any kidney problems. And it was on the GP records that I suffer from headaches, and I’d said on several occasions I take ibuprofen. So I wonder if that, you know, speeded up the, the kidney failure and that.

So creatinine is what they measure in your blood that determines how well your kidneys are functioning. So before I was called for the transplant, my creatinine was way up at one thousand two hundred. And now, just over a year after the transplant it’s gone down to ninety. And it has been sitting around about ninety for about a year. And the overall kidney function, which is what they call eGFR, that had dropped to four, and now is sitting at over sixty, which is what they would see in a person without any kidney problems. Yeah. No, it’s all good.

So peritoneal dialysis allows the patient to be able to dialyse at home. Or wherever they want, as long as it’s a clinical environment. The other option that I had was haemodialysis, where the patient has a fistula inserted in their arm and they have to go to hospital three times a week for four or five hours at a time. And they dialyse on a machine, which pumps the blood into the machine, cleanses the blood, and pumps it back into your body. And you’re in a lot more of a restriction when you’re on the haemodialysis, you’ve got fluid restriction.

Whereas on peritoneal dialysis, you could drink as much as you wanted. Plus because I was able to do this at home, it allowed me to be able to still work full-time. Plus it – for going – you could still go on holiday when you were on dialysis, but if you were on haemodialysis you were limited to where you’d go. You’d have to go somewhere that had a hospital that would allow you go to in and dialyse. So, PD – the peritoneal – worked a lot better for me, because I could go anywhere. So it just meant a lot of organising between the hospital and your destination, to ensure all your supplies were there for your arrival. But going back to the explaining what it is. With peritoneal dialysis you have to dialyse four times a day every day. So you quickly got into a routine, and you dialysed in the morning before work. And that would take – takes about half an hour each time. And basically you have a bag of fluid which you would hang up onto a drip stand. And you connect the bag to your, your dialysis tube, which goes into your peritoneum. And you would drain that fluid into your peritoneum. And then you would leave it for minimum of two hours, maximum of eight. And then you would drain that out. And then once you’ve drained out, you drain another bag in. So you’re repeating that process four times a day.

And so can you tell me what happened then after that, the sort of biopsy?

Yeah. So they didn’t know for sure whether it was Alport syndrome, but they thought it probably was. And it wasn’t until around about 2010 that they got the definitive diagnosis of Alports. So I was told information about that. And basically told that it’s more severe in males, and that the males tend to develop renal failure in their twenties, and they can go blind and deaf. But females tend to live a normal healthy life, which is controlled by taking medication. So I wasn’t worried about it at the time, thought I would have a normal life, and just take – you know – keep taking the medication and I’ll be fine. But just over the years my, my kidney function’s started to deteriorate. And then in sort of 2009 it was deteriorating faster, and I was seen more regularly at the renal clinic. So that was a pre-dialysis clinic. And then in- trying to think of the years. When I was around 27, my kidney function – the eGFR is what they, they measure to tell you how well your kidneys are functioning. It was dropping. And when I was around 27 it got as bad as five. And that’s when the – it all came out of the blue. The consultant phoned me to say “We’d like to book you in for an operation next week, to have a catheter inserted into your abdomen, to start you on dialysis.” So it was all a bit of a shock. Because I felt generally well in myself, I was still working full-time, I had a part-time job – I was working two jobs, saving a deposit for my first flat. And I was still going to the gym, and had a social life. So I felt I was managing fine. So it was, yeah, it was all quite a shock when they told me that I’d have to go into hospital the following week and be started on dialysis.

I didn’t have to do anything. I just went along and she spoke to me about – asked about family history, and I guess she looked at the kidney biopsy.

So that – was it just then you then got a definitive diagnosis?

This was some time after that meeting with the genetics, yeah. There was tests that had to, that had to go to London for various testing. And that seemed to take forever.

So it wasn’t until much later. Do you remember who sort of told you, or?

It was very vague. I actually had to ask the hospital, because it’s been really vague in actually getting somebody’s actually sitting down and saying. Like I think if I was to ask them just now, they would say they can’t be a hundred percent certain it is Alports. So I’ve – nobody’s actually said it’s definitely Alports syndrome that you have.

So they didn’t know for sure whether it was Alport syndrome, but they thought it probably was. And it wasn’t until around about 2010 that they got the definitive diagnosis of Alports. So I was told information about that. And basically told that it’s more severe in males, and that the males tend to develop renal failure in their twenties, and they can go blind and deaf. But females tend to live a normal healthy life, which is controlled by taking medication. So I wasn’t worried about it at the time, thought I would have a normal life, and just take – you know – keep taking the medication and I’ll be fine. But just over the years my, my kidney function’s started to deteriorate. And then in sort of 2009 it was deteriorating faster, and I was seen more regularly at the renal clinic. So that was a pre-dialysis clinic. And then in – trying to think of the years. When I was around 27, my kidney function – the eGFR is what they, they measure to tell you how well your kidneys are functioning. It was dropping. And when I was around 27 it got as bad as five. And that’s when the – it all came out of the blue. The consultant phoned me to say “We’d like to book you in for an operation next week, to have a catheter inserted into your abdomen, to start you on dialysis.” So it was all a bit of a shock. Because I felt generally well in myself, I was still working full-time, I had a part-time job – I was working two jobs, saving a deposit for my first flat. And I was still going to the gym, and had a social life. So I felt I was managing fine. So it was, yeah, it was all quite a shock when they told me that I’d have to go into hospital the following week and be started on dialysis.