Sammy

Age at interview: 36

Age at diagnosis: 17

Brief Outline: Sammy was diagnosed with Alport Syndrome when she was a child. Her mum had Alport Syndrome and sadly passed away aged 39. Sammy had three miscarriages before having kidney failure at the age of 23. She had a kidney transplant when she was 28 years old. Her faith has been very important to her – it has “kept her going throughout”.

Background: Sammy works part-time as a teaching assistant. She lives with her husband. Ethnicity: Pakistani.

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Sammy was diagnosed with Alport Syndrome when she was a child. She remembers her mum was always in and out of hospital and was diagnosed with “weak kidneys”. Sammy is one of five children. She remembers her mum’s brother being on dialysis before he had a transplant. He caught an infection and sadly passed away. Her mum had a transplant shortly after and Sammy remembers her mum being “terrified” when they got the call from the hospital. 

Sammy remembers her dad was verbally and sometimes physically abusive to her mum. Sammy says that her mum had “a lot of courage” and “she never sat down and cried about anything” despite having a “really tough life”. Sammy says that her Grandma and Grandpa helped out a lot. Her mum’s health improved a lot after her transplant, and she even did the Hajj, the Islamic pilgrimage to Mecca. However, her mum’s new kidney started to fail and she was put back on dialysis. She sadly passed away three years later from heart failure at the age of 39. Sammy got married at the age of 18. She met her husband in Pakistan. She remembers this as a “beautiful holiday” and felt very happy with her in-laws and still does today.   

When Sammy was 20 she fell pregnant. At the time, Sammy was working full time. Unfortunately she miscarried at 5 weeks but did not find out until her 12-week scan. A few years later in 2003 she miscarried again, only two days after her 21-week scan. It was around this time that Sammy also developed kidney failure aged 23. She was told that her miscarriage might have been due to her “weak kidneys”. Sammy and her husband were also renting privately at the time and she says that their landlord had “decided to throw [them] out”. Luckily, a local housing association offered them a place to live, and today she owns her own home after saving up.

Sammy went onto CAPD dialysis later that year and said she felt it gave her the “freedom” to go on holiday and travel around. She continued working full time in a manufacturing company but with reduced hours to fit the CAPD around her schedule. She was put on a renal diet which she says “was quite hard to get used to”. At the time her periods were “all messed up” and she would have periods for “forty, fifty days at a time”. She put on weight and her blood pressure “shot up”. Sammy said it was “mentally draining”. She felt so tired and “couldn't even walk ten minutes” without getting out of breath. She was on blood pressure tablets and medication for her cholesterol.   

She kept on getting serious infections from the CAPD and her doctor advised her to go onto haemodialysis. She had an operation for a fistula (a special blood vessel surgically created to connect an artery to a vein) and started haemodialysis in 2008. Sammy “hated it” because she often fainted and “it wasn’t working well”. She was on haemodialysis for 4 months before she had a kidney transplant in 2008. This was successful and Sammy remembers “the reaction of people was just so amazing”. After her transplant in 2012 she did the Hajj (Islamic pilgrimage to Mecca). During this pilgrimage she met people from all over the world and said it was “such a nice feeling”. 

When Sammy was in her late 20s she developed hearing problems. She now wears two NHS hearing aids but she says she only puts them in when she has guests over or when she is out. When she is home alone she prefers a “bit of peace” so does not wear them. She feels that some of her medication should be free such as her anti-rejection drugs as these are expensive and she will have to take them for the rest of her life. 

Sammy was made redundant from her company after working for them for 14 years which had a financial impact on her life. She found being made redundant “really upsetting” because she felt like she had worked hard to build up her department yet in the end felt she wasn’t treated like “a person but you were just a little digit for them”. Despite feeling financially worse off, she says that she lives her life “humbly”. She misses the routine that her work gave her. Recently Sammy started working part-time at a special needs school. For her she says “I need to work. I need to focus on something. It's not the money, but I need to be out and about”.   

Sammy feels that she has had a very supportive husband. She says they have a “good married life”. She believes her marriage isn’t typically Asian: when she was ill her husband did lots of the cooking and cleaning. She feels that over the years it is also her faith and religion which has “kept her going throughout”. Her advice for others is “just be humble. Just be a good person. Just live your life simply.” She says this is regardless of religion because it is about “being a good person”. Sammy says she takes “each day as it comes” and says that she tries to stay positive at all times as it is “the only way to get through having Alport Syndrome”. 

Sammy’s first call didn’t lead to a transplant because her white blood count was high.

Right I got called in, in April.

Before April? Yeah. End of March, one time. And it's after five years. I did, you know, go in and see. You could ring them, and it's like why aren't I getting called in? Because it's been like two or three years, and normally they did say it's a two or three year wait. And they're like "Oh, because you've got a rare tissue type." I'm like 'Oh, brilliant. Now I've got a rare - Alport -'

Is that what they told you, then?

Yeah.

Okay.

'Now I've got a rare tissue type.' I was like oh I’m just that rare. But then I thought 'okay, don't worry, it'll happen one day'. And it did. They called me in. And they were like "Are you fit and healthy?" I'm like "Yeah, yeah, yeah." Even though I had a flu a couple of weeks before, but I recovered from it. But they took about 24 bottles of blood, and tested everything. Like, you know, the white blood cells, every single blood test going under the sun, before they could give you the kidney. They come back. "Oh, you can't have the transplant now." "Why not?" "Because your white blood cell level's too high, indicating that you've got some kind of infection." And they're like "If we cut you open, and if we give you a kidney and it's not going to be good - waste of your life, waste of the kidney." So I was like really upset. Because I obviously waited five years for it, and I was quite upset. And plus in January, for four months before my transplant, in January I started - 2008, started doing haemodialysis, because the CAPD - and I hated it. Every other day I was fainting. Like, you know, because of low blood pressure, and like the needle didn't even go in, my arm was always bruised, and. It wasn't working as well. And it was just so horrible, I just really, really hated it. And I was so upset. Because that's when the first time I felt like really ill. I carried on working, and I used to go on dialysis Tuesday, Thursday and Saturday. And I used to go in at five, six o'clock. So my husband dropped me off. But he works night, so I needed a lift back. So when I finished, - we used to go in about five, six. And I used to finish at about eleven, twelve. Sometimes one o'clock, because I’d be fainting so much, and - or sometimes there was something wrong with the machine or something. And I'd be in like physical pain, and they had to stop it for a while. And I'd come home really dizzy. And I'd come home starving. But I didn't have no food, because obviously there are no one like cooking for me. And I did have to warm up just whatever food I had. But honestly, I had no energy.

Because that's when I felt really, really bad. And even this one, when they called us in the second time - and the first time I obviously felt really sad, went home, and I had like told all my family, and they're like - you know, this aunty just rang - she was in Saudi doing pilgrimage. You know, this mini one? She said "I prayed to god that you'll get it." And then one of the nurses who put me on - used to put me on dialysis, she'd just come back from doing the pilgrimage, and she goes "I prayed for you." And then there was this nurse, that obviously I did spend a day in the hospital when I was gonna get the first kidney. And she goes "Okay, we'll see you soon." And I'm thinking 'why am I gonna see you soon? I've waited five years, you think I'm gonna come back that quickly?' But it just - when they called me again, and I had the successful transplant, it was just like everyone was just so amazingly happy.

And the reaction of people was just so amazing. It was just so overwhelming. It was like I didn't really think they would be that happy. But even like this colleague I used to work with, and she was my cousin's friend, and she'd be like "Ah, I did a little prayer thing for you." And I'm like "Did you? Why would you do that?" It's like "Ah, I'm so happy for you." And it was just so overwhelming.

Sammy describes her hearing loss and getting hearing aids.

When my hearing started getting a bit - like it was getting a bit harder hearing, and I couldn't really hear properly. But I knew it was something - the doctor obviously knew, the kidney doctor knew it was something that comes with Alports. So he always used to organise hearing test. Maybe it was before that, maybe. I can't remember. Can't remember exactly, to be honest. Think it was 2006.

So you had your transplant - or when was it that your kidneys started to –

Yeah, my kidneys started failing 2013. Sorry, 2003.

Ah, okay. Yeah.

Yeah, 2003. And 2008, five years later, I had the kidney transplant. But in between –

And how old were you in 2008?

About 28, 29.

Okay.

Yeah. And it was - about 2006, that - you know - just went for a hearing test, and they said - first of all they said yeah, your hearing is deteriorating and you just need one hearing aid. And I'm like, at that time - I just don't know why, I said "You know what, I've a feeling it is going to go more downhill, can you just give me two? Because I'm not gonna keep coming back. I've got so many other appointments to go to, I'm not gonna keep going back." And they went "Yeah, that makes sense." So they gave me hearing aids. And I just only used to wear one. And then I start wearing two. But to be honest, only really - until this day, I only really wear them when I'm out, or when I've got guests over. If I'm sitting home alone, I'd rather prefer not to have them in.

Sammy says that with cutbacks it has become more difficult to get her hearing aids checked.

Because I'm - and then I'll say to mother-in-law, my sister and brother, just can you speak loudly? They do get annoyed. But I think, you know, because I like - I don't - I like to be a bit of peace, I don't need to have noise all the time. And sometimes it was quite difficult to get on with, because when you're - especially at a party, there's all these noises going on, and all you can hear is just noise. And sometimes you just can't concentrate on one particular noise. And plus now with the government cutbacks, because I go like ten mile away is the hospital I go to, to get them checked out and to get the batteries. It's in [place]. About a thirty minute drive. And there's a clinic there you can drop in if there's something wrong with them. Because there's always something wrong with them, and you need them fixed. It's like the clinic closes at four, so I have to be there before four. So I thought - and then I did - the renal team, I get checked up after my transplant, get checked up every four months, three months, and they come to [place]. Which of course, you know, for the [place] patients. And they used to get the batteries from there. And then they got really strict, and like they can't give you the battery, you have to get them from - and I was like "Seriously?" And like the batteries, like you have to go all the way to [place] to get them.

Sammy describes the struggles of managing work and finding a place to live whilst having miscarriages and kidney failure.

Then he [husband] managed to find a job there [supermarket]. And I was working as well, he was working. We weren't making loads of money, but we were getting by. And we, you know, had our own place to rent. And then we were - I was on the council list. Because I was on the housing list in [place], so I was on that when we moved here as well, in [place]. And then when we rented we got private landlord, he kind of like kicked us out. It was like he wanted to get rid of us. But I kept getting pregnant, and I was going through this. I don't know what happened. I think after my miscarriage, when I was pregnant, the council were so close to giving us a council place, because I was living in such cramped conditions, because we couldn't afford a whole place, it was a shared house. And such cramped conditions, like they were gonna - you know - possibly give us a place of our own. And the only benefit we got from there was that the rent was maybe twenty, thirty percent lower than private renting. So I think that helped us. I mean, it wasn't like, you know, you get the council place and you get housing paid off, because we was working, so that paid off. Which was fine, you know? We were so grateful that we still had a council place, where we didn't have to worry about - you know - maintenance, or whatever, because the council did that, because it was through housing. But we did pay rent. You know, we paid our way. I wasn't on any other benefits. Didn't get that until, because I'd miscarried, after they had the interview, they came to see what place I was, two days later I miscarried. But I couldn't lie to them, could I. But then still, but then that's when my landlord decided to throw us out. So, but they went through the courts. So that's when the housing association council did offer me a place.

Sammy’s faith has helped her with Alport Syndrome and difficult family circumstances.

But my Mum's social life was - and my Dad wasn't very nice person. He was kind of abusive, but like verbally abusive. And sometimes physically as well. And you just felt like, Mum would just - she was, she had like a lot of courage. She was, you know, she never sat down and cried about anything. And, she was more courageous than me, I would think. But she just went with the flow.

And, and I think now - my Grandma used to say, you know, my Grandma's been through tough relationship with her husband, like my Grandad. She's been such a strong woman. She's always been trust in god. And I think that's what got my sister through. And then even now, we were just talking about it the other day, we're like "Well Grandma used to be right, trust in god. God has a better plan for you." Even though you might think this something nasty. Say if I like lost my child, maybe it's god's plan. Because if I had that child and my kidneys fail, how would I cope? You don't know. And anyway, my Mum passed away at a young age - even then, when she passed away, when I was about 19 and I used to my uncle - you know, talking about her, and I'm like "I'm glad she died." And he's like, "How dare you say that?" And I'm like "Because she's away from pain."

The pain, the physical pain she had to go through to be on dialysis, and the day-in, day-out, her daily routine, her life, you know, the family she lives with. It's emotionally hard as well, which no one really sees that side, because - you know - the Pakistanis, they ignore all the emotional side of things, and they just look at the financial, and look if you're fit or not fit. And because obviously they do know, because they're the one that's given you that headache, they're the ones that keep putting you down. Even now I feel as if I've got no, nothing to give.

But with the Alports, I mean, with my health, I think it's just that faith. And that - just that little patience, and other little things, and niggly things like your Grandma and your Mum used to say. You know, even though you might not - my Mum used to read the little religious books, and even though she used to give example, like maybe you don't have to know the - you know - the holy book inside out, or come out with, you know, the quotes. As soon as that - maybe you don't have to like - But just be humble. Just be a good person. Just live your life simply. Because that can translate to being a good person. But then I believe that that's not just a religious thing, every religion has that. You know?

Sammy put on weight after getting the contraception injection and found it hard to lose this weight on dialysis.

Like a glucose solution goes in, attracts all the poisons in your body, and then drains it out. And you did that four times a day. But with that, my renal diet, I had to change. I did need more protein. Because although it took all the poison, it took all the good stuff out as well that your body needed. And I was on a renal diet, which was quite hard to get used to, because I didn't really like cheese or anything. And, yeah. Fluid restriction. At the start, fluid restriction was okay, but it kind of like - you know - because it's like the less you wee, the less you can drink. My wee was getting really less and less. I wasn't outputting naturally. But it depends on your body weight, and how tall and things you are. But at one time, all of a sudden I remember my weight went up because my periods - my period cycle was all messed up. I couldn't stop bleeding. I used to be on my period like for forty, fifty days at a time.

Woah. Really?

Yeah. And then I used to have like a two week break, then they'd start up again. And I'd just get really –

Was that linked to the Alports at all, or?

I dunno. Dunno. Don't know what it was linked to, to be honest. Didn't really investigate. But when I seen the gynaecologist, I didn't realise at the time - she gave me this injection, and maybe a contraception injection. After that injection - she didn't tell me the symptoms, I put on weight all of a sudden.

And my weight shot up. And my doctor was like - and then my blood pressure shot up. And he was so angry, he was like why are you putting on weight? You know, your blood pressure's really not good, blah, blah, blah. And I did try my best to go on a diet but it's so hard going on, losing weight under renal dialysis because you're so restricted to food and you're so restricted, you know, your movement. I can just about manage to go to work, and come back. I still worked 'til three o'clock. And I remember when I used to come home - I couldn't walk home. And when back on dialysis, I just could not walk home. I just could not walk. And it was so upsetting, because at first I can walk forty minutes. But then I went on dialysis, I just couldn't even walk ten minutes, I'd be out of breath. 

So tired, yeah. 

Really. Because you're still anaemic as well, and so tired. I just - and it was so mentally draining, because I was thinking 'oh my god, I used to walk forty, fifty minutes a day, every single - you know - forty minutes in the morning, forty in the afternoon - what's wrong with me now?' I just really - really, really - no, because I enjoyed walking, and I just couldn't do it. And I just felt really upset. Like I can do work, I could go to work, I could still cook, clean and everything, even though it'd take me ages cleaning my house, because I used to take time, have a little bit of rest, then clean the bathroom.