Clare - Interview 56

Age at interview: 50

Age at diagnosis: 46

Brief Outline: Clare experienced a stroke while at home with her husband. She had blurred vision which she initially thought was a symptom of her diabetes. In addition to diabetes and stroke, Clare has had lifelong health issues including kidney problems, for which she is undergoing dialysis.

Background: Clare is a 50 year old retired catering manager. She experienced a stroke at age 46. Her ethnic background is White British.

More about me...

 

Clare experienced a stroke while at home with her husband. She wondered if her initial symptoms of blurred vision was a symptom of low blood sugar (she has type 1 diabetes). She then developed pain in her eye, experienced nausea and was generally feeling ill. Her husband called a friend who is a nurse who thought that Clare was likely having a stroke and that he should call 999. It took the ambulance one hour to arrive due to poor weather conditions. When the ambulance arrived she “felt completely numb.” She remained in hospital for 3 weeks then discharged herself because she felt that she would recover better at home. She later went into a rehabilitation hospital, and again, discharged herself when she felt she was no longer making improvements. She rated the rehabilitation favourably but felt she had reached a plateau.

 

The stroke initially affected her speech, which she regained in time. When she first started talking again her words did not come out the right way. What she would say was not always what she meant to say or thought she said. When she regained her normal speech it was due in large part to her own efforts in practising with family members. She reflected on her mother’s experience with stroke and the frustration that she witnessed when her mother lost her speech, which fuelled her determination to recover. The stroke also left some lasting effects including numbness on her right side and face (she cannot see out of her right eye or hear out of her right ear) her ability to walk, and the use of her right hand and arm. Clare also has an artificial leg, which was not treated properly while she was in hospital. This led to the development of sores which prevented her from practising walking and regaining mobility. Clare remains quite optimistic and determined, but describes being unable to walk as the most frustrating part of her recovery.

 

Clare has a long history of health conditions. She was diagnosed with type 1 diabetes and developed kidney problems at a very young age and she later had a transplant. After having her stroke her medication to prevent kidney rejection was not managed well and she now needs another kidney transplant. She is currently undergoing dialysis as she waits for a transplant. There was some discussion of whether she could have a double transplant of both kidney and pancreas, which would mean she would no longer need insulin for her diabetes and would reduce further complications from the diabetes. The waiting time for a double transplant is also shorter than for a kidney transplant alone (2 years rather than 4 years). However, an angiogram showed Clare has reversible ischaemia (reduced blood supply to the heart) which means a double transplant operation (which takes 10 hours) would be very risky for her.

 

Clare’s other health problems include osteoporosis and previous wrist fractures. Despite on-going health issues and treatment problems, Clare is determined to improve and avoid further stroke. She has become even more careful in managing her diabetes, specifically her blood sugar levels, since her stroke and urges other diabetics to do the same. 

 

Clare was at home working with her husband when her eyesight went blurry, She initially thought...

 

Well, there wasn’t really a background because the stroke took me totally unawares, I mean I was just working with my husband in the kitchen and everything, and - but I did notice that day my eyesight seemed to be quite blurry, but because I’m diabetic that can happen anyway. So I didn’t really take any notice. The snow was falling rapidly outside and it was about a foot deep by the evening, and so I don’t know if that was worrying me, because we used to send out food - we run a mail order business and I was just worried that with such heavy snow the food wouldn’t be able to get to where it had to get to, and it was my job to actually make sure people had got their food. And there were several people I’d rung who hadn’t answered because either they hadn’t been home or they’d given us a number which they only used when they were at home or whatever. So you know, I was quite stressed that day, I suppose, and then about 11 o’ clock at night I went to bed. And I also suffer from IBS [irritable bowel syndrome] which affects me about once a week, and unfortunately it affected me on this night, so I went to the loo, and everything’s happening, and then suddenly I got this pain in my left eye, like you would get if an insect had gone into your eye, if you - what I imagined it was like was if you were rushing down a hill on a bicycle and something went in your eye, sort of like that. So, and it was really painful, actually, I could hardly open my eye and my eye started watering - and because my right eye I can’t see a lot, at the time I couldn’t see a lot of, you know, I couldn’t see out of that much. It was sort of partially gone anyway, but that’s another story. And so basically I got this pain and so I thought, “Gosh, what’s happening to me?” So I got up and thought I’d better try to get to my bedroom which was up a step and just along the corridor, and I couldn’t get to the bedroom, in fact I got to the spare room and I collapsed on the bed. And I suddenly felt all my right-hand side just going, it just sort of went numb. And I thought, “Gosh, it’s my sugar. I’m having a really strange hypo”, but I’d never had it like this before - and I dont get hypo symptoms so I, that’s why I thought it might be my sugar. But my sugar was fine, it was seven, so I wasn’t worried about that. My husband was asleep downstairs so, you know, on the sofa in front of the TV, so he wasn’t much help, but I did shout to him that something was wrong, and eventually he came up and he said, ‘Oh it’s just your sugar.’ So he tested my sugar again, and it wasn’t that. And then he didn’t actually call the ambulance service, despite the fact I couldn’t stand up, I couldn’t do anything. And I then started feeling sick, and so he had to carry me into the bathroom because he said – well, I obviously couldn’t walk - and so he carried me into the bathroom, and gave me a bowl and put me on the loo and all the rest of it, and I started being sick. And he just basically didn’t call an ambulance, he rang a friend who’s a nurse and gave her all the symptoms [laughs] and everything and she said, ‘Well, it sounds like Clare’s having a stroke. I think you’d better ring the ambulance’.

 

Clare spoke regularly to her father which helped her recover her speech.

 

I just felt if I got home I could talk to friends and things on the phone and get my speech back. And in fact after three weeks they did let me back, and Neil said he’d look after me. And I started ringing up my father and various people and telling them that I couldn’t talk properly but I talked gobbledegook, and they were all quite happy. But I came out, I think, at the weekend, and on the Monday my GP, who’s a very nice lady, came to see me, and she came to see me again on Wednesday, and on the Wednesday she said, ‘Gosh, your talking has really improved since Monday, I’m really surprised.’ But I’ve really, really been determined, because my mother couldn’t talk and I’d seen what it was like if you can’t talk.

 

How do you think you got the speech, what did you do to - was it just willpower or what?

 

Well, I’ll tell you at [name of hospital] they eventually got me a speech therapist, but I think it was willpower, actually. You know I mean, like I say, my father was actually, you know, I could ring him up and I could talk for an hour, and I sort of, a few words would come out but not others. I couldn’t, it was just pretty determination, and he was just very, very nice [laughs]. I mean he just said the odd word and sort of asked me the odd question to get me to talk. And, you know, he let me do that quite a lot, so I think it was - and also Neil encouraged me to talk and, you know, I think it was really sheer determination, because I’d seen my mother, who hadn’t had speech. Because of that it was very frustrating for her, because my mother was quite like me, she was a chatterbox, and I could see she was really, really, you know, sort of frustrated by it all. So I was determined not to be like that. I really did want to be able to talk so, you know, it was more important than other things, really.

 

Clare wrote letters to her aunt with her non-dominant hand as a form of therapy.

But I still, I do everything with my left hand now, and I basically - I mean, I couldn’t you know write vaguely with my left hand, and also, actually, straight after the stroke - and I think this is really important for anybody who wants to learn how to write or anything - straight after the stroke I had an aunt who lives in Scotland, and I used to write, before I had the stroke I used to write her 10-page letters. And after the stroke, although she was in her 80’s and she’s died now, unfortunately, but she insisted I still wrote to her. And of course I couldn’t really say, ‘Well, I haven’t got, you know, any ability to write’, but she said, ‘I don’t mind how short the letter is. I just want something from you.’ And so she was a very strong woman, very, very determined, and basically because of her I wrote with my left hand. And I’ve been able, until I got the computer which I’ve only had for the last couple of years, I used to write to her sort of a whole A4 side, so I used to be able to write, but I don’t think all the writing was very clear. I mean it was pretty unreadable, but she always said it was fine.

 

Clare talks about her experience with having multiple health problems since a young age.

 

And presumably losing the leg in the first place was diabetes-related?

 

No it wasn’t.

 

Oh, it wasn’t?

 

No it was MRSA.

 

Oh no.

 

Yes, so, but I did have problems with that leg, because I’ve broken it twice, and basically it was in a walker boot, but, and I was getting treated - we lived in [name of city] then - and I was getting treated at the local hospital, but they eventually said – well, they didn’t actually say anything. I think they would carry on treating things, because I was getting sores and things in the boot, and they were sort of diabetic-related in that respect. And then I got a huge big lump and they thought it was - oh what’s it called? When your circulation and your blood and everything sort of, you have a clot. But actually I went into hospital and they said to me, because I’d had problems with that leg for about 18 years, and they said they actually – well, obviously they took the swabs - and they eventually came and told me it was MRSA. And then a man at 11 o’clock at night said, ‘Well, I think we’re going to have to amputate your leg tomorrow’ and – ‘tomorrow morning’ - so I didn’t have much time [laughs]. It was 11 o’clock at night, and so I rang [name of husband] and said, ‘I’m having my leg amputated’ and he couldn’t believe it.

 

In 1997 I’d had a kidney transplant. And they said, ‘It’s either going to be your kidney or a leg - which do you want to lose?’ And at the time my kidney was really important to me, and it just thought it gave me a different kind of life, and my leg has been bad for 18 years, so I said, ‘My leg.’ So - and they also told me with an artificial leg you’d be able to go skiing and do whatever you like, but actually I haven’t. But I mean, you know, in fact before my stroke I could walk and do anything quite normally. I didn’t even have a limp with the artificial leg, it was absolutely fine.

 

And that choice between leg or kidney?

 

Yes.

 

Was that because they thought there was a risk the…

 

Well they said the MRSA would go into my body and just work its way up and, you know, it would probably take anything that was susceptible to going, so my kidney would probably go. And I just felt, I mean I’d had it – well, I’d had it five years and I just felt, ‘No, I’ve only had it five years’, so I just wanted it to go on forever, sort of thing.

 

And the kidney transplant did come from the diabetes, presumably?

 

No it didn’t.

 

How many bad luck stories can there be?

 

No, it came from the fact that when I was a baby I lived in Africa, and my mother apparently said I did have a fever and it turned out that I’d actually had a kidney infection and it had left scaring on my kidney, on my kidneys. And suddenly in my twenties I got another kidney infection and I started being treated at the hospital for this new infection and everything, and then they decided that I had kidney disease, but they actually said that the diabetes would aggravate it and probably - I mean that was when I was about 25 or 24 or something like that - and they actually said to me, ‘You’ll be on dialysis, you know, within a couple of years.’ But actually I didn’t go on dialysis until about 1993, when my daughter was about two, two and a half, so it was actually probably the pregnancy which had aggravated the kidney, but you know, I didn’t go on dialysis. They actually said I’d be on dialysis by the time I was 26 and I wasn’t, so I kept going until I was 32.
 
And of course you’d had a kidney transplant as well back in the days...
 
Well yes I had, that’s true, but also when, after I had [name of daughter] I think it was before I went on dialysis – yes, it was before I was on dialysis, I had to have a hysterectomy when she was just two and, because after I had her I carried on being sick and they couldn’t understand why. I’d had morning sickness throughout the pregnancy anyway, but I carried on being sick so, I mean, you know, it couldn’t have been - but of course the kidney people said no, it wasn’t the kidneys. It was my hormones. And also I was getting very heavy bleeding, so basically they gave me a hysterectomy. But the hysterectomy went slightly wrong and - oh I don’t know, I had one thing after another - and then when I was in intensive care after the hysterectomy they had to put me onto dialysis for two weeks. And then suddenly my kidney went into overdrive, like it was on a honeymoon period or something, and worked for six months, and then suddenly it went downhill and I had to go on dialysis at my daughter’s third birthday. So in fact I went into hospital, you know, over her third birthday I was actually in hospital having the tubes fitted really because I was going to go on CAPD [continuous ambulatory peritoneal dialysis] which is a system you can have at home.
 
I don’t really think about my conditions. Apart from the walking, not being able to walk. I think that’s the only thing that annoys me at the moment, because that does actually annoy me that I can’t walk and I have to rely on others to do things for me and I mean [name of husband], because we’ve got a step between our sitting room and kitchen, I’m usually in the sitting room, he has to do all the cooking. I mean he used to be a chef, but even so he still has to do the nightly cooking and everything so.

Clare has an artificial leg which was not treated properly in hospital. She developed sores and...

 

When I was in the hospital the only thing I could feel, and obviously I couldn’t feel anything, was them tugging at my leg because they obviously knew it was artificial but they didn’t know how to get it off, and they tugged and tugged, and then I must have gone out completely, because the following day when I came, when I eventually came to, my leg was sitting on the side. And I’ve got a rubber thing which keeps it on, which goes right up to here and you have to, when you’re taking the leg off, by pushing a button, you have to pull the rubber thing down, but apparently they just pulled it off me somehow - they managed to, but it stays on by suction, I mean it must have been really difficult. So, but I thought afterwards they really ought to be taught. I mean, I can’t be the only person with an artificial leg who’s had a stroke, but they really ought to be taught how to take an artificial leg off.

 

And the walking, I mean, given that you had an artificial leg anyway, it must have been quite difficult to get that going again, wasn’t it?

 

Yes, well, it was and it wasn’t. I think the artificial leg in a way helped me because you know, I could see a lot of people who’d had strokes that their right leg is completely gone, but of course with an artificial leg from the knee downwards it’s solid, and your ankle’s solid, so actually it’s easier than not. But they did try to help me to learn to walk at the County Hospital, and they got me out of bed with hoists and everything, and I had to stand up and whatever, but the first time they put on my artificial leg, the rubber thing has to go on absolutely straight, and be clean to the skin, otherwise if you have any air pockets it can cause blisters. And because I hadn’t got any feeling in that side I didn’t realise that this thing wasn’t put on properly, because I couldn’t put it on because my right arm was so bad, and they put it on, and when they took it off my leg was covered in blisters, so I couldn’t wear it, actually, all the time I was in hospital so they had to give up on that side of things.