Alan

Age at interview: 49

Age at diagnosis: 19

Brief Outline:

Alan was diagnosed with X-linked Alport Syndrome after he experienced kidney failure at the age of 19. After having a transplant which lasted 22 years, he lost his kidney after a motorbike accident.

Background:

Alan has a degree in engineering. He is currently not in employment. Ethnicity: White English.

More about me...

When Alan developed renal problems at the age of 3, the doctors diagnosed him with nephritis. He feels that he had a relatively normal life up until his kidneys failed when he was 19, but in hindsight he realises that he was more prone to fall ill and develop chest infections than his peers. He was eventually diagnosed with X-linked Alport Syndrome in his early 20s through genetic testing, which explained the chronic kidney problems his male relatives suffered from.

Alan was on CAPD dialysis for 7 years, which allowed him to remain mobile. He enrolled in a university degree to improve his career prospects and to keep himself preoccupied. However, he feels that the seriousness of the illness impinged on his everyday life, and he became more socially isolated. He fell into a depression, for which he was prescribed antidepressants. Alan received his first kidney transplant when he was 26. He experienced the aftermath as a “huge transformation” and felt immediately better.

Still, Alan struggled to find skilled employment after the transplantation. He also had major difficulties with proving his eligibility for benefits, which left him financially vulnerable for a year. He feels that “coping with the illness is one thing, but coping with the system, that lets you down” is another issue altogether. He believes that he should have been helped as a young person in his 20s who had already paid a lot for his education. Alan’s transplant lasted 22 years, until he lost his kidney in a serious motorbike accident. He is on haemodialysis at the moment, and is yet to be put on the transplantation waiting list.

Alan currently lives alone. He feels lucky that he has had a good family to support him. Alan finds it most important to be able to “get on with it”. He feels that positivity has become his family’s motto due to the difficulties and losses they have had to endure because of Alport Syndrome. He is satisfied with the care he has received so far. Although he feels that the renal consultants tend to “keep you in the dark”, he believes that the “impacts of having too much knowledge […] can be depressing”. He would advise newly diagnosed people to keep a positive outlook because “there’s hope”.

Alan talks about getting a definite diagnosis of Alport Syndrome through genetic testing

It wasn't until the mid eighties that I had genetic counselling, at the [the hospital], when they found that with my, my family presence - my sister and my mother had Alport syndrome. So as I say, that was in the eighties. But right up until then, we didn't really know, you know. My kidneys failed at the age of 19. So I went on to CAPD dialysis.

How did you, when did you find that all out, about your family members having Alports?

Well they, they had kidney problems at an early age, but we didn't know it was Alports. And I, my mother wanted to look more into it, rather than just getting along with it. You know, accepting it. She wanted to look into it. Because I think that, you know, they just say polycystic kidney, but I think the research back then wasn't as efficient as what it is now.

It was my mother that really, you know, got things on the ball, you know. Because I was under the [Name] hospital, the genetics team, then got in touch with us. I think, I'm not sure whether they tested my sister. Because my sister had - I think she'd be a carrier. She's got no children. But I think she would be a carrier. So it was for my sister's concern as well as mine, you know?

Alan is weighed at his haemodialysis sessions and he is on a strict diet and low fluid intake.

Yes, the haemodialysis is three four-hourly sessions a week. So obviously I have a fistula. Which, you know, is done to put the needles in for the machine. Which then cleans the blood through a filter. It after. When I come off dialysis, I feel a little bit sort of light-headed. But that stabilises, you know, within ten or fifteen minutes. Sometimes you feel rough when you come off, but it seems to stabilise the next day. You know? A lot, you know, still on strict diets and a low fluid intake because I don't pass urine now, at all. So whatever I drink - yeah. It adds to the weight. So prior to dialysis, I weigh myself. Then they know exactly how much fluid to take off.

Ah, right.

So, my dry weight's 97.5 kilos. So, I go in 99. They know to take that off, plus 500ml for the wash bag. They give me iron, in the machine. And I also have what they call a… injection, that's to boost my haemoglobin, the red cells count. Or the oxygen carrying count. You know? So yeah, it - I mean, I remember initially after the accident, and then being transferred from the hospital to the renal unit, how better I felt. And my friends said, "You look so much better." And this is, you know, after my kidney. And I thought, 'yeah'. So it couldn't have been working that well.

Alan said he felt a huge transformation after his transplant.

Very tired all the time. But having said that, I felt a huge transformation once I'd had that kidney in and I was still in hospital. You know what I mean? I had lots of spots, and my face - my complexion - was just much better. I looked healthier, straight away.

Really? 

Yeah, it was a huge transformation.

That quickly?

Yeah. Yeah, yeah.

And did you feel it in yourself, like much better, or?

Oh, yeah. Yeah. I didn't have the, the nausea associated with, you know, renal patients. It's just like I was cleansing my body, you know? My waterworks were going again. I felt better. I didn't feel - once I came out of hospital, I didn't feel fit, because I was so heavy. I think all the water that I was carrying, carrying around, I just felt sluggish. You know? I mean, I did try. You know, I did engage in physical activity, I started cycling and walking. But I think - I used to have a fast heart rate, and it used to really tire me out. I don't know whether it was the medication, the blood pressure tablets, but made me a bit nervy, you know. And I had to accept it.

Alan felt that Alport Syndrome made him ‘grow up quick’.

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.

Alan says that he saw a renal counsellor which helped him.

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.

Alan talks about dealing with dialysis and his attitude of picking himself up.

Well it's a bit - you know, I won't kid you, you know, but. It's automated. You know? You, you just have to get on with it, you know? If I don't go on there, the grim reality of course, you know? Couldn't live without it. So, you know. I try and make the whole experience as pleasurable as I can. You know? Obviously there's other people there to talk to. You know. I mean, where I am, you know, there's - majority of it's a lot of elderly. And you know, but being a bit younger, I feel as though I should be a bit more bubbly. You know, get on with it. It's a bit like, it's a bit like the depression, you know? You know you're suffering from it, but you try and override it, you know? You know, constantly saying, 'come on, pick yourself up, and' you know. But I had that drummed into me by the family, "Come on." Or, you know. You know, I've watched through my mother, you know, I've watched two brothers suffering. You know? Of course. There's, it's a thing in our family because both my Mum's brother, brothers - both 21 when they died. And I was 21, but luckily I got through.

Well, try to - try as much as possible to keep, you know, positive about it. You know? Always think that there's a hope. You know, there are - technology is increasing, you know, improving. That's the way I look at things. And, you know. Yes, just to be positive. Yeah.

Alan is hopeful about the development of an artificial kidney.

So, but I'm hoping to get back on the transplant list. If I can't for some reason, I'd be geared up to an artificial kidney. It seems to me that they're trying to phase out dialysis. You know? Because it. And that would be the best - you know - thing, I think. You know? Because, you know, it does take so much of your time from your life, you know? So I'd be all for having either a - well, I say either - I think they do a belt. They do a belt that goes round your waist, and that's an artificial kidney. They do an implantable one. Like, like a - I don't know, but I'm sort of comparing with a pacemaker. Like a pacemaker sort of thing, you know, that goes inside you. Plus then again there's always 3D printing, I think they call it, stem cell. So, it's all in the pipeline. But it's, it's to think about, you know? Gives you a positive outlook, thinking.

Alan felt very disillusioned when he tried many times to get work after his transplant and wished employers would show more compassion.

I was geared up to get going, to get back in a job, and to feel good about myself, you know? To be independent. And it was knock-back after knock-back, you know? I don't think there was enough compassion out there with employers, that could see my circumstances. I felt as though I'd really, you know, fought hard - you know - to try and get out there, and I was just getting knocked back. And I felt very disillusioned. And it got me depressed. You know? Yeah.

What were you hoping to do, in terms of a job?

Well I'd gone into engineering. I'd been to university to get a degree, I'd got that, and still nothing.

Yes. I mean, you know, normal life is working, isn't it? You know? Accept the fact that I'm not working, and I'm not bothered about it now. You know? I used to have this hang-up about not working, 'I'm not going to meet anybody because I'm not working'. Because I had, I felt insecure, you know? But I had a damn good reason. Even though I tried to explain it to people, they just, you know, they just didn't understand. You know? And it, you know, it built up a frustration. And it, you know, it'd get you down. But I've come to terms with it, you know? So I mean, like I said before, I'm proud of my achievements. You know? But I mean, I wouldn't you know, I wouldn't go back into education now. I've had enough of that [laughing]. I've been on course, courses, you know? I've done enough now, don't wanna be doing that.

Alan discusses how Alport Syndrome affected a previous relationship and his feelings about future relationships.

Yeah, I have to be focused on myself. You know? What's best for me. And I still do it now. You know? But it, it does, it does play a big part in your normal life, yeah. Relationship-wise, and things. I feel pretty much set in my own way, you know? In my own ways. Yeah.

Did you find that - did it impact relationships and friendships?

I mean, I was married. I was married for sixteen months. But that, that split wasn't nothing to do with the illness as such. But I think now, you know, I'm still a single man. Divorced, if you like. It's affected - I'm not looking for a relationship, you know? I'm not - and don't get me wrong, I've been on a few dating sites and stuff [laughing]. But I still get this doubt in my mind, am I ready? Can I cope with it? Can I? You know? Because it's a bit like 'look after number one'. You know? I certainly couldn't take - even though when I was married I had two sons. Not mine, but my ex-wife's. And, sometimes I wasn't fit enough to take that responsibility. You know, was too tired. "Oh, let them get on with it." You know? That was my easy, 'I'm too tired to cope with it'. You know, that - I suppose that does have a negative, you know, aspect. 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?

Alan doesn’t want to burden his friends about Alport Syndrome even though they’ve become more understanding over time.

I think friends now, as I've got older, and they've got older, they're more - they're more listening, more understanding, than when I was a teenager. You know? They seem, they appear to be more caring, and more considerate. You know? But, you know, I have friends that say, "Oh, how are you doing?" And I'll say, "I'm fine, don't worry about it, don't worry about it." "I haven't heard from you in a while?" I said, "Well I'm still here." So, I - you know. But as much as they, they, they seem to have an attentive ear, you don't want to burden them with it. You just want to carry on with your normal life, you know?

But at the same time, it is a reassurance that they do ask.

Alan says that although he is analytical and wants to know information, at the same time he doesn’t want to have too much knowledge.

I've always said that they do keep you in the dark, sometimes. You know, renal consultants and things. But I think - I don't know, as a youngster I used to think maybe because they just want you to get on with your life and they don't want you to look. I was always, as a youngster and now even, very analytical and want to know. So I read things. But contradictory to what I said to you before, I don't wanna know too much information, no. Because, you know, the impacts of having too much knowledge in that respect can be, you know, a bit depressing, so.