Donna - Interview 25

Age at interview: 18

Age at diagnosis: 13

Brief Outline: Donna was diagnosed age 13 with a kidney condition called Mesangiocapillary Glomerulonephritis type II. After diagnosis she was on medication and remained stable for three years. But her condition deteriorated and she needed a kidney transplant. Her mother was her donor. Her sudden deterioration affected her physically and also emotionally. She became depressed and felt rejected and isolated from her then 'group of friends'.

Background: Donna lives at home with her mother, stepdad and younger brother. She is recuperating at home from a kidney transplant. Ethnic background/nationality' White British.

More about me...

Donna was diagnosed at the age of 13 with a kidney condition called Mesangiocapillary Glomerulonephritis (MCGN) type II. Type II means that even after a transplant it can come back. After diagnosis she was put on a high dose of a steroid called prednisolone and she remained stable for three years. During that time she was able to attend school and lived life like any other teenager with the only difference being that she had to take a quite a few tablets everyday. After three years her condition deteriorated fast and her doctors found a lot more blood and protein in her urine which showed that her kidneys were damaged. She had a second renal biopsy which showed that the tiny holes that filtered her blood in her kidneys were getting bigger so she was losing the minerals and nutrients her body needed. Her kidneys, because they were not working properly, were holding back extra fluid in her body, and she was getting very 'puffy' looking. She said that she looked like she was 'nine months pregnant' and that it was difficult and painful to walk and that she felt tired all the time. She then went back to hospital and after a week of unsuccessful attempts to reduce her body fluid she was started on dialysis. She was very scared and equated 'renal failure' with death. The doctors told her that she would be on four hours of dialysis three days a week until a donor could be found for her to have a transplant. Luckily her mother was her donor and she had a kidney transplant in 2005.

This sudden deterioration in her condition was very tough on her both physically and emotionally. She was unable to attend school regularly or take her GCSE's. She felt rejected and isolated from her then 'group of friends' as they failed to understand what she was going through. She began to self-harm and felt unable to talk to others but she was able to write notes to her mother expressing her thoughts and emotions. She said that the support and love of her mother, other members of her family and her nurse all helped her overcome her negative feelings and she stopped self harming. 

In general she thinks that the positive thing that has come out of her experience is that it is has made her family much closer. She also said that she now appreciates her step dad more than before she had her transplant.

She was diagnosed at 13 with kidney disease. For 3 years she was fine on her medication but then...

Okay so if you start.

Okay, I first became poorly when I was thirteen years old. I felt fine in myself, it was just one night I was staying at a friends and my ankles were very swollen and we weren't sure why, but it was midsummer so I thought it might just have been because of the heat. The next morning it had gone down, and then a few weeks later, I was playing in our back garden in our paddling pool, and a neighbour noticed that my legs were really swollen, so that week my Mum took me down to our local doctors, but they didn't think anything too much was wrong. They just thought I might have a hole in the heart, and they took some blood tests. The next day we had a phone call saying that we had to go straight to our local hospital, as soon as possible, because they had picked something up in my kidneys. So we went there. I spent about four weeks on the ward and had all sorts of different tests done, they couldn't really find what was wrong, so I was then transferred to [hospital] where I was then again tested for lots of different things. I was given a renal biopsy, which showed that I had mesangiocapillary glomerulonephritis type II, and the type II means that even when I have a transplant it can come back again. I was put on a low dose of, to start off with I was put on a high dose of prednisolone, a steroid, and was very stable, and they just slowly weaned me off of it as I was on that for three years, and then, I got to a low dose of, it was about 5mg alternative days and my body just didn't like that, and everything went down hill. But in those three years I was at school fine, just enjoying myself like any other teenager would, apart from taking a few tablets here and there.

When you say you went downhill, what do you mean?

All of a sudden my blood levels were going very high, my creatinine jumped high, and they found a lot more blood and protein in my urine which showed that my kidney was letting a lot out which it shouldn't have been. I then had another renal biopsy, and that showed that in my kidney I had lots of, to start off with there was lots of little holes, but they had now gradually got bigger, so I was losing a lot more of the stuff that my body needed, I was also holding a lot of extra fluid all over my body, I was very puffy at that time. They let me go away to monitor me, I went on holiday for a week but couldn't enjoy it because I was, by now I looked about nine months pregnant, and to get up and walk around was very difficult and painful for me at that time. So I was, half way through the holiday I had to go back to the hospital, I was put on a drip to try and make me get rid of all the extra fluid, but to start off with that worked really well, but then it just stopped working. My body didn't want to cooperate, so about a week after that I was told that even though that wasn't working, I was alright, and because my main worry was being on dialysis, I was told that I wouldn't be on dialysis for ages. About a week later everything had gone downhill even more, and I was then told that I was going to have to go on dialysis, that week. Which was a big shock, it really upset me.

Why?

Because when I was younger, when I ever heard of you know dialysis, renal failure, the first thing I thought of was, 'Well I am going to die.' You know because at that age you don't think about transplant and all those different things. So when they explained it to me I was, it settled down a bit, but I was extremely scared about just the whole thought of sitting there having a machine do everything.

Was alarmed when she was told that she would have to have dialysis but found the nurses helpful...

Okay. When you say you went down hill, what do you mean?

All of a sudden my blood levels were going very high, my creatonin jumped high, and they found a lot more blood and protein in my urine which showed that my kidney was letting a lot out which it shouldn't have been. I then had another renal biopsy, and that showed that in my kidney I had lots of, to start off with there was lots of little holes, but they had now gradually got bigger, so I was losing a lot more of the stuff that my body needed, I was also holding a lot of extra fluid all over my body, I was very puffy at that time. They let me go away to monitor me, I went on holiday for a week but couldn't enjoy it because I was, by now I looked about nine months pregnant, and to get up and walk around was very difficult and painful for me at that time. So I was, half way through the holiday I had to go back to the hospital, I was put on a drip to try and make me get rid of all the extra fluid, but to start off with that worked really well, but then it just stopped working. My body didn't want to cooperate, so about a week after that I was told that even though that wasn't working, I was alright, and because my main worry was being on dialysis, I was told that I wouldn't be on dialysis for ages. About a week later everything had gone down hill even more, and I was then told that I was going to have to go on dialysis, that week. Which was a big shock, it really upset me.

Why?

Because when I was younger, when I ever heard of you know dialysis, renal failure, the first thing I thought of was, 'Well I am going to die.' You know because at that age you don't think about transplant and all those different things. So when they explained it to me I was, it settled down a bit, but I was extremely scared about just the whole thought of sitting there having a machine do everything. So, I think later that week I had a central line fitted, and then I was put on dialysis for'I think it was, to start off with I was only on there for about three hours, because they wanted to get rid of the fluid, which was taking a long time to disappear. Eventually they managed to get it all off and I had been holding 14 litres of extra fluid on board. And then'

Okay. Tell me more about dialysis; you said that to start with they put you on for three hours?

Yeah. I think I had that, they started me three times a week for three hours to start off with. Once they'd got most of the fluid off, they then decided to try and put me for two times a week, but still for three hours. My body didn't really cope with that very well because the fluid then piled back on again, so I had to stay for three hours three times a week, and then after about two weeks of that they decided I needed a longer period of dialysis, so I was then put onto four hours three times a week, I was told that I would stay on that till I had a transplant. Which to me, that just became a routine, you know that was my life. I made some really good friends while I was there, and the nurses were really helpful, when I had down times they'd sit with me and you know they'd explain everything. Any questions I had, which I found really helpful, so did my Mum.

Describes the 'work up' she and her donor (her mother) needed to have before her kidney transplant.

Okay, well while I was on dialysis they started the transplant work up. Which is to have my bloods done to check obviously my blood group and things, and my Mum had hers done to see if she was compatible with mine, which actually took quite a while to come back. It took about four or five weeks to get those results. We finally got them back and my Mum's was compatible with mine. And then she had to go up to London for some more tests, I think she spent about a day up there having all sorts of things, she had ECG's, loads of different scans, just to check that everything was okay with her. So, we then had to wait about two months to get all those results back, in the meantime I had to go up there for just appointments, with the consultant up there that I would've been under while I was up there. He went over all the different aspects of transplant like what would happen before, he went through the operation itself, and then explained what would happen afterwards, he didn't go into too much detail at that point. Once Mum had got her results back, it was all cleared, and we would go ahead, we then had another appointment together up there where they went into more detail about the operations. We then both met our surgeons, and they explained about the operation as well, and then it was just a case of waiting to see when they had a space to slot us in, altogether the process probably took about nine months, from beginning to end, to when we had the transplant.

Her mother donated her own kidney for the transplant so was recovering in hospital and unable to...

Well when we got to London, I was obviously admitted, and I had dialysis the morning after I had been admitted, and then the next day I was to have the transplant. In the meantime my Mum had been admitted and she was at [name] hospital, and while I was in the children's [ward] at [hospital], that was quite hard not having my Mum there because she has been there you know for every other surgery that I've been through, and she found that hard as well not being there for me for when I went down. But I had my Auntie with me, and she was really helpful. I wasn't nervous at all about the operation; I was more worried about my Mum. So on the morning of the operation I spoke to her on the phone before she went down, and then I think she was down for about four hours, she went down at about eight, and I didn't go down till about one in the afternoon. I'd been given a pre-med to keep me calm, so the only thing I can really remember was I kept saying that I didn't want to go down until I knew that my Mum was back and safe, which I do remember them telling me so I was grateful for that. I had blood tests done that morning as well to check that my potassium and everything was safe for me to go to surgery. Then the next thing I knew I was up on the ward with a new kidney. With plenty of nurses and things around me making sure everything was alright, which was, it was very reassuring knowing that you had all those nurses there, checking that everything was going smoothly, and that I had my family there as well, apart from my Mum, and my stepdad who was over with my Mum at her hospital. But I think I spoke to my Mum about two hours after I came back from surgery, which was nice and she sent me a little, my sister had videoed her on her phone, so I got to see that which was quite amusing.

And when did you see your Mum again? How long after?

She was discharged two days after the surgery so she came straight over. And that was nice to see her.

After a year of hospital treatment they found out that they could reclaim some expenses. She was...

Yeah, to start off with my Mum would take me up there three times a week, which used to cost quite a bit, in petrol. And then for the parking as well. We only got about, well we didn't even get about a quarter of that back, and by the time we'd been told that we were entitled to a bit of petrol money back, I'd already been on dialysis a year, so we'd lost a lot of money. Within the last, it must have been about the last three or four months of dialysis I was, well I did choose to have transport, which is where they would pick me up in a hospital car, they'd take me and then bring me home. But because I was the last one to go on my machine the hospital transport used to finish at four o'clock and I was on my machine until 6, so even though they would take me to hospital, my Mum still had to come and pick me up and bring me home. So we weren't really getting anywhere with that. But with other benefits, I wasn't able to get anything at that point, and we've tried for disability living allowance, I can't remember the other benefits we've tried for, but there was a lot of different ones we've tried for, and we just kept getting turned down for them.

What was the reason you were turned down?

It was just simple things like on the disability living allowance I was told I couldn't have it like because I was capable of going to the toilet myself, and just silly things like that that you know most people would be able to unless you know they had quite severe problems. And all the other ones I was told that I couldn't have them because apparently our monthly or weekly income was a decent amount, and that was the only reasons really.

She was angry with her body for causing her illness and went through a very down period in which...

When I was first diagnosed I found it quite hard to take in, because I think 'Ah this is me.' Because you think well that will never happen to me really. You think that about everything but then when it does you know it really hits home and you think 'Oh God.'  I did get very upset, I tended to get upset quite a lot in the evenings, I'd go sit in my room and have a little cry and think 'Why me?' you know. And I did find it very hard to start off with, I found that I could tell my Mum certain things but she would get upset as well, which would then upset me even more, it was just a vicious circle but I did have at one point a very down time where I did start self harming myself, I'd be very angry and that was the only way I could, I think I thought that was the only way to get rid of that anger and I soon as I done it I realised it wasn't helping at all, I didn't tell my Mum but I'd write her little notes, I'd just like write a note explaining how I was feeling and give it to her, and I'd let her read it and I'd go off and then she'd come and talk to me and I found that that was a lot easier than telling her face to face. Because I've always been close to my Mum and I've always told her everything, but I found that a lot harder to tell her, but she was very understanding about it and she helped me through it a lot, and I think I self harm myself about three or four times and I then, she really spoke to me and you know she told me that if there was absolutely anything that I'd got to talk about, even if it upset her, then I was to do it. I also had, well I had two really good friends at that point, and they helped me as well. So I ended up, I got out of that, and got that put behind me, and then I was doing really well, and then when I went onto dialysis I found that quite hard as well. You know, I do everything since I was little you see all these programmes on telly, all these you know documentaries, and I was always, there was always one that sticks in my mind, I remember seeing two little girls, they couldn't have been any older than six, and they were both sat on dialysis and I'd always said to my Mum I hope I never have to do that, and that was the one thing they'd said, give me anything else, but don't make me be put on dialysis. And so when I was I found that really hard and I was angry at myself because it was my body that had caused it, and I think I got quite angry at the consultants that even though it wasn't their fault there wasn't really anyone that I could take it out on. I do regret, I think I was quite grumpy towards them at some stages, but I mean, after a while of being on dialysis I did tell the nurses quite a lot of things and they'd helped me as well. I managed to control my feelings a lot better, and I was a lot happier for a while then when they came up with transplants, that really you know boosted me and make me think, 'Yes, you know, I can do this. You know I can see an end in sight if everything goes right.' I think at that stage I was just before they said about transplants, I was looking at some of the other kids who were on dialysis and they'd been on it for quite a long time, some of them had been on it for like five or six years, which made me wonder you know am I going to be on it that long? And so then when we got the results through it was just like a huge weight lifted off my shoulders, and it was a big relief knowing that you know I was lucky enough to have my Mum who was a match and able to give me a kidney, and throughout the few months after having the transplant, I was on a high the whole time really, apart from the little bits of rejection, they got me down. Because the thought you know of rejection that's not a good sign, even though it was a match, it was still a risk that you know I could reject altogether and lose the kidney, but, I mean the medication that I was on after my transplant should've made me really grumpy, but I was quite lucky that it d

She had to make a lot of changes to her diet because of kidney disease. Her dietician gave her a...

What did the doctors say about what you should eat, or you couldn't?

There was a lot that I couldn't eat, but the things that I was to eat was plenty of things with calories in. They liked us to eat doughnuts with lots of, icing on top and things like that. So that used to help bring certain blood levels down which make us feel better, and they got a bit sickly after a while. The things you weren't allowed to eat was anything with potassium in, so I wasn't allowed chocolate, potatoes, I wasn't allowed chocolate.

So you had to learn a lot about food what you could '

Yeah, tomatoes was a definite no.

No.

I wasn't allowed phosphates, I wasn't allowed cheese, milk, things like that. So, yeah it was really hard, when it came to meal times and when I was hungry you can't just pick up anything. Also anything with fluid in because I was on a fluid restriction, yoghurts, even an orange and things like that. I was allowed oranges, but simple things like that which have juice in, even bananas I wasn't allowed them. So it was quite hard.

Did you have some help from a nutritionist, you or your Mum have help from the nutritionist, or leaflets that explained'

Yeah, I had a dietician and she gave me a little booklet with lots of leaflets in saying what I wasn't allowed, and it was also giving me meal ideas as well as what I could do. Which was quite helpful. So, and they used to, every now and then we would have to write down what we'd been eating, for like say two or three days, and they'd look at that and see whether I was eating what I was allowed or what I wasn't allowed, so they'd change little bits here and there.

At every stage of her illness she has felt reassured and well advised by her medical teams. Some...

They'd always be very good; they'd always spoke to me and my Mum rather than just my Mum. Which I found helped a lot, because maybe they'd explain things very clearly and very well. And if there wasn't anything I didn't understand that the consultants had said, if I asked one of the nurses they were quite happy to go into more detail about it and explain it better for me. Which was very helpful. We did find that at points, I mean after my transplant, my Mum felt a bit pushed out because I kept getting little bouts of mild rejection at certain points, and they didn't seem to be able to get on top of it, and me and Mum felt that there was something that they weren't telling us, which was quite difficult, and I think me and my Mum had quite a few words with the consultants and they had little meetings and said how we felt, and because they weren't getting on top of it and we said well what aren't you doing right, you said you know you can stop rejection, I'm on all these medications and yet nothings working. So then they did start telling us more about what they were trying, what they were thinking about. Which was, that was better because you know, they'd realised that we wanted to know more information about what they were going to do. But then towards the end they were really good, they did start explaining things a lot better to us, so.

Okay, this was the team in London?

Yes.

And what about the team in the hospital near your house?

They were always really good before my transplant, they told us everything. Since I've had my transplant I've only had one appointment back there so far, so I don't really know how it is going to go.

You went back to the same consultant you've had before?

Yeah. Well I had, there were three consultants when I was on dialysis, but when, after you've had a transplant you can pick to go to any one of those clinics, and I chose a certain consultant because he was, I found that I got on with him a lot better than I did the others. So I chose to go to him.

What made him different or better?

I think it was just the way he explained things and he tended to speak to me, like I was an adult and he was, he wasn't all, I mean if you were in like a clinic meeting, it would be me, him, or my Mum and if my Mum couldn't get someone to look after my brother he would have to be there, and the consultant wouldn't mind that, he would talk to me and my Mum and then he might talk to my little brother and you know we felt like we were all welcome with him. But then with certain consultants we've felt like, I don't know just as if they thought we were a bit rude, having my brother there with us, which made us feel quite uncomfortable. Yet if my Mum had a choice she wouldn't have brought him into the appointment.

Wasn't able to do her GCSE exams but she was graded according to her coursework. She then went on...

That was, well I was doing fine at school then when I was put on dialysis I wasn't able to go to school to start off with because I was kept on the ward just to monitor everything, when I tried going back I couldn't, and that was just, well I couldn't take my GCSEs, because I was in hospital at that point, but I had managed to finish all my coursework before I went down hill, and then, from that they did my GCSE results, and I had good enough grades to go to college and things that I really wanted to do. So when it came to about September, I started college as I had intended to anyway, I really enjoyed it to start off with, but then, just as, I'd be sat there and I'd be doing really well to start off with in the lesson and then, everything else would just wander into my mind and I couldn't concentrate on what I was supposed to be doing, and I was very tired as well, and constantly feeling quite sick, so in the end I decided to leave that and then try again in the next September, and then I couldn't because about a month before I had a transplant so I was unable to, and I then tried to see if there was part time courses that I could do, but, no colleges locally were doing any at that point. So now I, next September I'm just hoping to be able to start some part time ones as well as if I can manage to hold down a part time job so.

Talks about the friends she made while having dialysis and how her friends from school were...

Well there was when I first started on dialysis there were, there was three other children already on dialysis. One was only a young lad, he was, I think he was three when I started, and then there was a young lady, she was twelve, and an older lad who was, he was a year younger than me, so when I was first on dialysis I was, I'd just turned sixteen, yeah, and he was just under sixteen at that point, so I managed to get on quite well with him. But because they'd already been on it a little while, anything I needed to ask from someone else's point of view who was already on it, they were quite happy to answer, and it also, I think it was quite nice for my Mum to be able to speak to their parents, to understand how they found it as well, having a child that was on dialysis. But, then we had some really fun times in there, even though we were attached to our machines, we'd still, we'd have a laugh, we'd joke around with the nurses and things because you know when you're stuck there for four hours you tend to just have a good joke with everyone, sometimes if we were lucky enough and there was only two of us in there, our nurses would move our machines closer so that we could play things like board games or cards, things like that. So, yeah it was good fun, there was a good group of friends there.

And your other friends, the friends that you had from school, the new group, I mean, you managed to keep in touch with them regularly?

Yeah. Sometimes I think I had about two of them that would every now and then, if they had like a TD day, they'd come up to dialysis with me and sit there for a while with us, which I found helpful because tend to get a bit bored as well. And sometimes when I was on the ward, all of them, there were about six of them, would catch the bus up to the hospital and come and visit me for a day, which used to really cheer me up. So they have been really good, its just that there's certain things that they didn't understand like, what I was allowed to eat, and I wasn't allowed to drink much, and just things like that, but yeah, I mean they are still really good friends now, so I'm lucky to have them.
 

Despite money problems she feels that her condition has brought the family much closer.

I think in ways it has brought us closer together, we all tend to, talk to each other a lot more, like tell each other things more. That's within like the people that live in the house, and me and my sister we were never that close to my stepdad, but I think since my illness we've become a lot closer to him. We've, you realised just, it's just, I can't think of how you can put it but, like you said you realise that you have to appreciate things more. And we were just happy that my Mum was happy again, and she had found someone 'When it comes to my Dad we found that a bit harder, I don't think he tended to understand what had gone on either, you know he tried to be supportive but I don't see him that often so it makes it a bit difficult. Apart from that I'd say that yeah it has brought our family closer.

In terms of financially?

That's been difficult, that's been really difficult. I mean my Mum had to take a lot of time off work and they gave her a certain amount of sick pay, but not really, because you know she had brought it on herself having the surgery, and my stepdad is in the army, so he only get's a certain amount of time off each year and he had to take all his time off in one go, therefore then when he went back to work he had to really work long hours to make up that money again. Which that put a lot of strain on the family.
 

If you are feeling down and depressed then talk to someone and/or write little notes about your...

Well, you know there is, there is hope for everyone, you might not think at the start, but there is a light at the end of the tunnel somewhere. And when you do have those times when you're really feeling down, don't keep it bottled up inside, you need to tell someone, if you can't tell them face to face then you know, do what I did and write it down. Because the worst thing you can do is bottle it up I think. I found that out, the hard way, and there is always someone there, that you can tell, and they'll help you through it. Make sure, as long as you listen to what you're told by your doctors, you know, what to do and what not to do, as long as you stick to them, you know, you're going to do really well, you're going to have ups and downs, everyone does, and everyone's different, so some things they are not going to expect might happen to you, but you know, you can get through it.

What do you say you learnt from your own experience?

I think I've learnt, you know, who my, I've found out who my real friends are, and it's also about relationships within your family. You tend to, because it's brought us all closer together, we do tell each other a lot more. And I've learnt not to just take things for granted. I mean life's too short, and you should just make the most of it, but that doesn't mean just to ignore what you're told, still do as you're told like taking any medication and things, but you know you might feel different because that was about just one thing, you know you've still got, I mean I've taken medication in the morning and in the evening and still got the rest of the day I can enjoy myself and do what I want to do. And everyone can.