A-Z

Mariam

Age at interview: 21
Age at diagnosis: 13
Brief Outline: Mariam had hearing loss from the age of 8. Shortly after at the age of 10 she experienced kidney failure and was put on the transplant list. She had a kidney transplant at the age of 12.
Background: Mariam had kidney failure at the age of 10. She had a transplant when she was 12 years old. She is currently studying for a Higher National Certificate at a local college. Ethnicity: Pakistani.

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Mariam was 8 years old when she started developing “trouble hearing”. She used to play outside with her cousins and sister and remembers this becoming difficult due to her hearing loss. She remembers her primary school teacher “telling everyone” about her having hearing aids, but that “all the kids were really nice about it” so it “wasn’t that bad”. Despite this, she felt like she was a burden constantly asking people to repeat themselves. She says that now, she finds being deaf has its advantages – for example not being disturbed during your sleep, and also she says there are “times where I don't want to listen to someone, I just switch it [the hearing aid] off.”

Mariam says that she had an operation on her ear when she was little, because the doctors couldn’t “figure out what was wrong” with her. However, when she was age 10 they found she had kidney failure. She went immediately onto dialysis and was also put on the transplant list. She remembers being “attached to the machine at home every night” at seven in the evening and her sisters keeping her company upstairs. She also had to do dialysis at a hospital which was over 40 miles away.     

Mariam was 12 years old when she got her transplant. She remembers getting the call for her transplant whilst getting ready for school. When she heard the hospital had a donor, she says she “broke down crying”. She remembers waking up from the operation and being “really confused” and that she “could barely speak”. Mariam found out that during the operation she had “collapsed” as the doctors tried out a new drug on her, which caused a “bad reaction”. Water had built up in her lungs and she was put into a coma for two weeks. She spent around a month and a half in hospital recovering. During her recovery in hospital she started experiencing severe hallucinations and “seeing weird illusions” due to all the medication she was on. She remembers feeling extremely ill “throwing up all the time, just crying”. Mariam says that everything affected her so much that she was too afraid to go to sleep. 

Mariam says at this point, the doctors were still unaware that she had Alport Syndrome. After her new kidney, she started having regular check-ups at her local renal unit. It was at this point that it was pieced together that Mariam had Alport Syndrome. After she was discharged back home, she also saw a psychological therapist who gave her some coping strategies. She says that “since I’ve had the kidney I’ve not been feeling ill or throwing up a lot, as I used to before”. She also remembers when she first had her kidney how she could suddenly eat “all these things” and was not on a restricted diet anymore. She says that the steroid medication made her put on weight, her hair started falling out and her body hair was “thicker and longer, and it was like horrible”. Whilst her medication has been changed a bit, she still gets some of these side effects.

She wishes now that she could meet her donor family to “say how thankful” she is. She took part in the Transplant Games shortly after her transplant, which she says was “amazing” and she won a bronze medal in swimming. Mariam likes to draw and has a great interest in art. When she was doing dialysis she spent a lot of time pencil drawing portraits of people as well as animals and objects. She is currently studying health and social care and wants to work in career helping people.
 

Mariam remembers when she was age 8 playing with her cousins and having trouble hearing them.

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Mariam remembers when she was age 8 playing with her cousins and having trouble hearing them.

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Well I remember when I was playing with my cousins, and also with my sisters. We usually play like games outdoor, like chase or just anything outside. And I remember there was a time where I had like trouble hearing what they were saying. And it really like freaked me out, because like before, I remember my hearing was perfectly fine and I could hear everything. And so when we were playing, when I had my Alports - well, I kind of - well, it became a bit difficult to play. 

Well I remember in primary school that the teacher was telling everyone about me having hearing aids [laugh].

Really?

Yeah. So it was a bit embarrassing. But, oh [laugh]. But yeah, I just remember feeling a bit embarrassed about my hearing. But all the kids were really nice about it, so. Wasn't that bad. 

Well afterwards, I remember that I had a lot of trouble with like conversations, and hearing what other people were saying. Like mostly in classes when everyone's talking over each other, I'm not really sure what they're saying. Sometimes I ask them can they say it again, but I remember they would get really annoyed with repeating themself. 

I remember I had to have like an operation on my ear. Yeah. I think they were trying to put - I can't remember what they're called. Just like these things in my ear, to help me hear better.

But it wasn't working. And I just kept getting worse with my hearing.

And, I remember it took them a long time to figure out what was wrong with me. And then I think maybe when I was 10 or 11, they found out I had kidney failure.

Ah

Yeah. So it took them a long time to figure out what was wrong with me. And they were saying that they think the kidney was because of my hearing. And that's when I got transferred to like renal clinic, but for children.

So I remember we'd visit them like almost every week or two weeks. And I also remembered that I was put in a, up on a list for a transplant. So, but at the moment I had to be on dialysis, and these machines, to clean out my kidney and the bloods, and. I can't remember how many times I had to go, but I remember in [hospital 1] they didn't have one, so I had to go to [hospital 2].
 

Mariam describes her hearing loss and renal failure age 10 before getting the call for a transplant.

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Mariam describes her hearing loss and renal failure age 10 before getting the call for a transplant.

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I remember I had to have like an operation on my ear. Yeah. I think they were trying to put - I can't remember what they're called. Just like these things in my ear, to help me hear better.

But it wasn't working. And I just kept getting worse with my hearing.

And, I remember it took them a long time to figure out what was wrong with me. And then I think maybe when I was 10 or 11, they found out I had kidney failure.

Ah.

Yeah. So it took them a long time to figure out what was wrong with me. And they were saying that they think the kidney was because of my hearing. And that's when I got transferred to like renal clinic, but for children.

I don't remember how many times I had to go in. But I think it was - I don't know. Almost half a week, I think. Anyway. I also remember that we got to bring one of the dialysis machines home, and use that. So basically I had like two - I had to use two machines, but one at home and one at the hospital. And basically I would be attached to the machine at home every night. So I remember exactly around seven, they would start attaching me to the machine. And I spent like the rest of the night in my room. Just, you know, doing drawings or watching the TV upstairs. I didn't actually have a TV until they bought it. And also like I remember like all my sisters were with me upstairs. Because I couldn't come downstairs. Yeah. I remember a funny bit. Every time I needed the toilet, they would - they would all drag the machine [laugh] with me, to the toilet. Because I couldn't actually reach, so. So, but I remember during the day I would have to go to the hospital and get attached to another machine, which was to clean out my bloods. And I can't remember what the other one at home does, but I think that was supposed to help the kidney work. I was only using those machines for, not long actually.

Right.

I can't remember. It was definitely longer than two years, I think. Well I think my Mum said it was only for like sort of months, I but I can't remember. And then they found a donor for me. Yeah. And -,I remember when I first heard that, that I had a kidney. It was like I think seven in the morning, I was getting ready for school. And then we got a call, and my Mum answered it. And, sorry. 

That's alright. Aww, bless you.

[Getting emotional]
 

Mariam says she used to get tired of taking medicines. Now she organises her medicines into a special pill box.

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Mariam says she used to get tired of taking medicines. Now she organises her medicines into a special pill box.

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How many tablets do you have to take a day?

Well, in the morning I would take about five small pills. And then at night I would just take like three or four pills. Some pills I don't have to take every day, they're just every like second day. But I remember a few years back, I used to take a lot of medication. Like I remember I used to get so sick and tired of taking medicines. And I remember complaining a lot about my medicine as well [laugh]. But now I've only, I'm only taking a little bit, it's not that bad. I've got these - this little box that you organise your medicines in. And each day has like four slots. And I remember they used to be full. But now, it's only like two pots full, so it's not that bad.
 

Mariam remembers doing home dialysis in her bedroom and her sisters keeping her company.

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Mariam remembers doing home dialysis in her bedroom and her sisters keeping her company.

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I don't remember how many times I had to go in. But I think it was - I don't know. Almost half a week, I think. Anyway. I also remember that we got to bring one of the dialysis machines home, and use that. So basically I had like two - I had to use two machines, but one at home and one at the hospital. And basically I would be attached to the machine at home every night. So I remember exactly around seven, they would start attaching me to the machine. And I spent like the rest of the night in my room. Just, you know, doing drawings or watching the TV upstairs. I didn't actually have a TV until they bought it.

And also like I remember like all my sisters were with me upstairs. Because I couldn't come downstairs. Yeah. I remember a funny bit. Every time I needed the toilet, they would - they would all drag the machine [laugh] with me, to the toilet. Because I couldn't actually reach, so. So, but I remember during the day I would have to go to the hospital and get attached to another machine, which was to clean out my bloods. And I can't remember what the other one at home does, but I think that was supposed to help the kidney work. I was only using those machines for, not long actually.

Right.

I can't remember. It was definitely longer than two years, I think. Well I think my Mum said it was only for like sort of months, I but I can't remember. And then they found a donor for me. Yeah. And. I remember when I first heard that, that I had a kidney. It was like I think seven in the morning, I was getting ready for school. And then we got a call, and my Mum answered it. 
 

Mariam recalls horrible memories in the hospital after her transplant and having severe hallucinations.

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Mariam recalls horrible memories in the hospital after her transplant and having severe hallucinations.

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But I remember I was - I started - I think from all the medication they were giving me, I started seeing weird illusions. Or I don't know what they were. I think hallucinating, I don't know.

Yeah, yeah.

And I was freaking out a lot. Like sometimes I would find like a clown in the building, and I was like "What's this clown doing here?" But no one else could see it. And then I think all the nurses were throwing a party, and I was like "What's going on? Like why are they throwing a party?" But I think that was really in my head. Like, yeah. I can't - I never - I was telling the nurses that I can hear children crying outside. And they would tell me that there's nothing there, there's no sound. Yeah. I remember I was always thirsty, and wanting water. But they, they told me I can't really have too much, so.

What were the doctors and nurses like, at the hospital?

They were nice. But I can't really remember much. Like I remember they would like come to my room, and do what they have to do, and then leave. I felt like they were just leaving really quickly, just -. But I guess they were just doing their job, but. I don't know. They were nice, but. From when I was hallucinating, they were like evil, for some reason, to me. Like I remember they were all like - that bit, when I was saying they were celebrating, they had a party, which I thought was a bit cruel. And then I remember this - I think it was a doctor and a nurse, started telling me all these horrible stories, about murders and people dying. But I think that's just in my head, but I don't know. Really did freak me out. 

Yeah, yeah. Of course.

Yeah. I just remember like just freaking out, and just crying and screaming when they had to put needles on me, or do anything. Because, I don't know. I don't actually remember any good memories, they're just horrible. I just remember me feeling ill, throwing up all the time, just crying. I remember my , my aunt and my sisters came to visit. Well that was a good time. Until my aunt decided to watch this really sad movie. And I felt so depressed afterwards, I was like - "Why would you watch that, there?" But-. My Mum was actually pregnant when I was having the kidney. But I think she already had the baby, it was actually a little brother I had, yeah. I remember he was visiting me in the hospital. And I remember he was so happy with everyone else. But when he saw me, he just had a blank expression, because he didn't know who I was. 

I felt quite heartbroken [getting emotional].
 

Since her transplant Mariam decided to follow a career in health and social care because she wants to help others.

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Since her transplant Mariam decided to follow a career in health and social care because she wants to help others.

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Well at the moment I'm studying health & social care. Because the thing about art was, it was just a hobby. It wasn't what I wanted to do as a career. I remember that I used to always like enjoy helping people, and like I used to be quite good at giving advice, as well. And I kind of wanted to do something in the healthcare. But I didn't know what. Like, you know, I couldn't really do like a doctor thing, because I wasn't that smart, to be honest. So that's when I started looking at health & social care. Like-. I don't know how to describe it, but I didn't want to be the one cleaning up people's mess, sort of thing. But I wanted to be the one that's like helping them getting better. So like being some sort of advisor. So I quite liked the interest of being a psychologist.

I also remember after I had the kidney, I was more grateful with life and stuff like that. And I was like, you know, I want to - I want to help people, make them love life again, and stuff like that. So I think that's what has sort of encouraged me to go there. 
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