Shahnaz - Interview 01

Age at interview: 54

Age at diagnosis: 31

Brief Outline: Shahnaz was diagnosed 23 years ago, when she was pregnant with her fourth child. She takes insulin and is having kidney dialysis.

Background: Shahnaz is a widow and mother of five children aged 21, 23, 25, 27 and 28. Ethnic background/Nationality: Pakistani muslim.

More about me...

Shahnaz was diagnosed with type 2 diabetes when she was pregnant with her fourth child, while she was still living in Pakistan. She experienced burning in her feet and extreme tiredness in a way that she hadn't felt ever before. Her doctors insisted on a blood glucose test, and that led to a diagnosis of diabetes. The doctors had hoped that it was gestational diabetes and would pass after the birth of the baby, but Shahnaz's blood glucose remained high. She had a fifth child and had to take tablets during her pregnancy. 

Shahnaz believes that her blood glucose stayed high despite the tablets she had been given and it was only after she was put on insulin, after she came to England 10 years ago, that her glucose levels stabilised at lower levels. She is also very careful about her diet and avoids sweets and sugary things. 

Between 2000-2001, because of the combined effect of diabetes and high blood pressure, Shahnaz had a haemorrhage in her eyes, and the doctors had to operate on her to drain the blood. Since then she has lost most of her sight in both eyes. In 2000, she also started having swelling in her legs and on investigation it turned out that her kidneys were failing, and were only 10% effective. Since then she has been having dialysis three times a week, for 3-3.5 hours each time. 

Shahnaz's family have been very supportive. She had felt despondent and upset when she became ill, especially when she began dialysis, but her family gave her lots of courage and helped her through difficult times. So for the past five years she's been active and busy cooking, shopping, going to Pakistan on holiday and enjoying her life.

Shahnaz goes to hospital for regular checkups (video in Urdu).

And so, do you go to a special clinic or' who are your doctors?

Yes, there is a diabetic clinic here, you know the hospital. In the hospital there is a separate department for diabetes doctors and approximately every eight months you get an appointment where they take the whole, the urine sample, blood sample and check so that'Then after that they check your whole condition, they look at your symptoms, to see if they haven't got worse, they check your feet to see if there are any wounds, so in this way, they do the whole check up properly.

So how do you find it all this treatment and having to meet doctors?

It's okay. As long as God is keeping me alive I'll have to do it, won't I? I have to be cautious, and meeting doctors is also necessary, and I never miss an appointment.

Talking about your diabetes treatment and treatment management, have you ever had any complaint or any problems or felt troubled?

No, so far by God's blessing I haven't had anything like that. Everything is okay, all the doctors are also very good here, they care very much. And they also tell me 'This is what you should do, this is what you should use.' So there isn't anything like that.

Shahnaz was pregnant when diagnosed and recognised that feeling so tired and having pain in her...

So the first time when the doctor, how did the doctor test you, when you were pregnant, so how did he test your blood?

He just in my recollection, he gave some glucose or something, they test something, that how much glucose do you have in your body. So I don't understand very well but they make you drink glucose etcetera, they test you, first time when they test your blood sugar. So then after that I found out that I have it, my sugar had been very high, very high.

And what kind of, what kind of symptoms were you having?

Yes, [my] symptoms were you know I told you that I was having this very bad tiredness, like I was feeling very sleepy, and my feet were feeling very stretched, like I was having lots of problems in my legs. I was getting this burning in my feet, lots of burning. So I would, you know, I would use my clothes, my long scarf, to tie up my feet. But then when we found that it's the blood sugar then they started giving me the tablets, so I had quite an improvement. I used the tablets, all of them.

So when you started having pain in your legs and started feeling so sleepy all the time, so what came into your mind then, what did you think then, what has happened to me?

Yes, this I had, I didn't feel that I couldn't have blood sugar because my own mother has blood sugar [diabetes], so I thought it could happen that because it's in my family I could have it too. Because my elder sister also has blood sugar, so then you know in that way, I thought that I will also have a test, so that's how I had the test. That maybe, god forbid, I might have it too. So, well it turned out that I had it too.

Shahnaz knows she has to keep her weight under control for her kidney treatment.

In the beginning did you lose weight or gain weight or anything like that?

Yes, my weight had become quite low, then, my weight, I think, it was 50, no, it was 47, my weight was 47 kilograms. But when you are on dialysis, your weight, they themselves work it out, that this is what your weight should be. So, when I went on dialysis for the first time, my whole body had swelled up, I had swelling in my whole body. So, at that time my weight was 68 pounds, 68 kilograms, kg. So then, they [got me to] reduce it so now my weight is 54 kilograms. So now, by god's mercy, it has been constant. Dialysis patients have to keep it constant. Neither am I too fat, nor too thin.

And do you do any exercise?

Yes, yes, I definitely do exercise. At home, I do it myself, and I go outside for a walk.

And at home, what sort of exercise do you do?

Well, I do my exercise standing up, or I bend down, there are these exercises for your hands, neck exercises, there is some exercise for your legs. I do them all, yes, myself. Yes. I stretch my whole body.

And has your nurse, or your specialist given you any advice about exercise?

Yes, the nurses did, in the very beginning, in the beginning they had told me that it's very important for you to do exercise, you need to do exercise. So then once or twice the nurses had come and they had told me, but then since that time I have been doing it myself. Hmm. Definitely.

Shahnaz explains how she increases the amount of insulin she takes when she returns to Pakistan...

Yes, I go to Pakistan. They also have a good system in place for dialysis, in Pakistan too. So, I get my dialysis done there too.

And so, a bit about, if you could talk a bit about your diabetes management in Pakistan in some detail'?

Well, when you go there then obviously among your own people there is lots of eating that goes on. So over there, basically, what I have to do for my diabetes is that I have increase my dose of insulin. Because people just insist, 'Oh please, eat this, eat that'. So even though I am careful about my diet, but I do increase my insulin dose by one or two, so that my sugar stays in control.

So this dose that you increase, is that on somebody's advice or?

Oh yes of course, I have checked with the doctors, my doctors here have said that when you look, check at night to find that your sugar is raised then take your insulin, take three or four doses. And if you find that with food as well, that you are eating the kind of food that carries the risk of raising your sugar, then also you can put two to three units [of insulin].

So the advice that the doctors give you, do you find it easy to'?

...follow it? Definitely. I find it very easy.

Shahnaz has been having kidney dialysis for seven years and describes what happens to her.

Well, basically the thing is, this you know kidney failure is also something that I got from diabetes. So when your sugar is raised, it starts having an effect on your kidneys, the sugar. So, my, from 2000 onwards I started to get a swelling in my legs, swelling inside my legs and all my blood started to become dilute, so'The doctor admitted me [to hospital], thinking that perhaps it could be a problem with my kidneys. So then we had all the tests, and then found out that my kidneys, you know, were only working 10 per cent. So then they put me on dialysis.

So, on dialysis, the main thing is that they have to take out all the fluid from your body. And, it is god's grace that, it's been six, no seven years now being on dialysis. In the beginning sometimes I used to get low blood pressure, sometimes it would be high, sometimes I would get cramps inside my feet. But now, you know, there's all these new technologies, for instance for cramps you can get these tablets, new tablets [XXX] they are called, so that you don't get cramps in your feet anymore. And, so thank God I don't get low blood pressure anymore. So quite comfortably we got, I get dialysis for three or three and a half hours and then come back. That's it.

So when you have dialysis, is it uncomfortable or'?

Yes, in the beginning, I used to feel, what is this, nobody in my family ever had to go on dialysis. So in the beginning when I used to go, then I used to cry a lot, in that 'what is this that has happened to me, here?'. So you know, my husband used to take me there, and he'd go to pick me up.

So you get needles inserted here [points to arm], you get needles inserted here. There is a fistula made here. And they put two needles into it. So with that they clean your blood. So, they clean your blood properly, all the water comes out. Three litres sometimes, sometimes two and a half litres, sometimes two litres' As much as you drink, the same comes out. Because your urine, only a very little comes out, you only have a small amount of urine. You pass only a very small amount of urine, and so via the blood they take it all out, the fluid. So, dialysis patients also need to be very careful, that you don't drink much. So I normally just use ice, I don't use water. No juice, no juicy fruits. And no drinks, just a bit of tea, about a quarter of a cup I drink in the morning, and another quarter cup of tea in the evening. Because for each patient, in the whole day, they are only permitted 500mL' So basically, that's the thing, here I am, alive before you. I go for dialysis, three days a week, Monday, Wednesday and Friday.
 

Shahnaz felt very despondent during the first year she was diagnosed but with her family's...

So have you ever felt you know, despondent, about things'?

Well, in the beginning, you know I told you, in the beginning, when it was my first year, then I had some. But by God's grace, my husband, my children, my daughter, gave me lots of comfort, gave me you know, they built up my courage and said 'this happens to lots of people, in the world, now don't do this''. I used to just sit and start crying, 'I can do nothing, I can do nothing!'. So my daughter did, you know she even used to bathe me, she used to do everything for me, but then slowly, slowly, slowly she's made me so capable, by god's greatness, that for the past five years I have been independent - I do the cooking, I go out with the kids to do shopping, I do everything, all the jobs in the house I do all that I can.

So it's Allah's mercy, I don't feel despondent or anything anymore. That's it, no more despondency.