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 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.
