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Joan - Interview 39

Age at interview: 88
Age at diagnosis: 74
Brief Outline: Around 1994, Joan was prescribed increasing doses of steroid tablets over a nine month period to treat auto immune haemophilic anemia. The steroids caused her to develop osteoporosis. She has severe curvature of the spine. Medication; ibandronate infusions.
Background: Married with two daughters, before retirement Joan worked as a local government employee. Her husband is her main carer. Joan's advice to others' ask questions about your condition and medications. Nationality/ethnic background' British

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Around 1994, after feeling greatly fatigued Joan went to see her GP. Her GP sent her to the hospital to the Haematology Department where she was diagnosed with auto immune haemophilic anemia and prescribed tablets that had little effect. As an alternative treatment, she was prescribed increasing doses of steroid tablets over a nine month period. 
 
The steroids did not help heal her anemia (-removal of the spleen did) and instead that caused her to develop osteoporosis at the age of 74. It was during a routine check up, that it was initially noticed that her spine curved and she was referred to a metabolic bone consultant who she has been seeing ever since.
 
To treat her osteoporosis, Joan was put on teriparatide (Forsteo) treatment and injected herself for eighteen months. Her bone density improved with the Forsteo. Joan currently receives every three months Ibandronate infusions. She hasn't felt any side effects. She also takes folic acid and calcium.
 
The curvature of the spine had made it difficult for her to breathe because she cannot expand her lungs. A lot of the time she is dependant on oxygen which is supplied along with the necessary equipment by Air Products.
 
Joan's back is not painful. Her lower back causes her some trouble sometimes but paracetamol or readjustment of cushions usually helps. Joan also has an adjustable chair.
 
Joan's mobility has been greatly reduced although she has found a number of ways to cope. To walk around the house, Joan’s leans on the Zimmer frame, two sticks or her husband. She can still prepare meals even if they are usually ready made and she avoids lifting saucepans. In the house, Joan also relies on an adjustable chair, and on stair and bath lifts which cost her and her husband a few thousand pounds. Thanks to the car which Joan's husband drives she is not housebound. The couple's two daughters are very supportive although they live in other cities.
 
There is a certain amount of apprehension Joan and her husband feel following the advice of Joan's doctor and their daughters' Joan does have some fear of falling and she and her husband will use the car only when necessary for fear of having an accident and his licensed taken away.
 
Joan's husband expresses great appreciation for the doctor who has been treating her, but Joan’s confidence in doctors was shaken by her experience because her condition was caused by a lack of care by the doctors who prescribed steroids.
 
Although, Joan asks questions she mainly goes along with what doctors say without fully understanding what they are doing. Over the years she has often felt that things were not explained to her and that diagnoses as well as treatments often came accidentally. Her advice to others' Ask questions!
 
 

Joan has breathing difficulties which is a secondary problem of osteoporosis.

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Oh yes, I can’t do what I could do a couple of months ago, or six months ago. Things are getting that bit harder all the time. And of course my breathing is not what it was a few months ago. So that’s getting worse all the time.
 
Okay when you were first diagnosed with osteoporosis were you able to do most things?
 
Oh yes. I was doing everything then and I mean it’s only gradually that it has gone worse and worse.
 
And now you have problems, difficulties in breathing.
 
Oh yes. I have. I can’t stand up straight, you see, I can’t expand my lungs at all. That’s why I have got the oxygen.
 
Okay so you need to have oxygen the whole time.
 
No, more or less. I can leave it off now. I mean I’ve had it on all the morning. Probably if I was to pull it off now, probably it would be all right.
But then when I start moving around I then cannot breath.
 
You can walk just inside the house?
 
Oh yes. I don’t walk out, because, you know, I can’t go very far. Without it I would be gasping.
 
And what have the doctor or the health professionals said to you in terms of what you can’t do?
 
They haven’t said anything. They just said, “Well you know you have got osteoporosis and everything is collapsing.” That’s all I’ve been told.
 
My back isn’t particularly troublesome. I don’t get a great deal of pain with it, except now and again. It’s only now and again, but I get sort of weary with the bone, they told me it’s because my bones are under strength. But I sort of get very weary with it.

 

What else helps with your breathing?
 
Nothing helps with my breathing. Apart from the oxygen.
 

Joan and her husband only use their car for essential journeys because he doesn’t want to have an...

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Well we’ve got the car. We go out shopping. I take a wheelchair, use that around the shop. And I mean it's all the supermarkets now, you only need to go into one and you can get everything in the one shop. So that’s what we do.
 
Okay and the lifting, your husband?
 
Well I’m able to walk a little way you see to the car. He brings the car right up to the steps here. And then I am able to get down the steps and into the car, and then he puts the wheelchair in the back of the car and off we go.

 

My girls don’t like him driving now, because they say you are so dependent upon the car, that if anything happened, and it only wants the slightest thing for him to be involved in, whether it was his fault or not, they would turn round and say at your age you shouldn’t be driving. And if we lose the car well we are stuck. We would be housebound then.
 
It would be more difficult to do things like shopping and going to the doctors?
 
Yes, those sort of things. We depend upon the car.
 
Husband' The hospital is ten miles away. To get an ambulance, you have got to wait for two, three hours and when you come out again you probably wait two or three hours to get the ambulance to come home. Which is stress making isn’t it? With the car you can get there in your own time, get her out of the car, put her in the chair, push her into the hospital, and the same thing in return. Yes, it can be done, but it gives you one hell of a long difficulty day going up there. The Heath is bad enough, but there is no bus service. And then there would be the difficulty of getting Joan on the bus.
 
Joan' To get out of [town] its two buses.

 

Husband' That’s right yes, because of the difficulty of getting down there, onto the pavement, onto the bus.
 
Joan' Well it is not that, but I can’t take the wheelchair on the bus.
 
Husband' That’s right.
 
So you wouldn’t be able to use public transport?
 
Joan' No, oh no.
 
You would either rely on the ambulance to come and pick you up?
 
Joan' Or I’d have to get a taxi.
 
And that would be expensive?
 
Joan' Yes, it's about twenty something pounds to get from here to [town] by taxi.
 
Husband' As well as time consuming.
 
So it would be more than £40 just for a hospital appointment?
 
Yes. Yes.
 
Husband' We get in there about say ten o’clock in the morning. Joan has a blood taken and then we sit and wait. You wait until about half past twelve. And eventually you see somebody who hums and hahs, looks at the papers and says fine, carry on with the treatment and we come out again. And it's time consu
 

Over the years, Joan has lost ten inches in height. Her doctors didn’t make it clear what was...

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And tell me about losing height you said that you have lost quite a bit?
 
Yes. Well I don’t know when I lost that, I mean it gradually has gone, I suppose I don’t really know. The first time they measured me I was four foot nine, but I mean I’ve lost a bit since then.
 
And now?
 
Well recently, I say recently, probably six months or more ago they measured me again. I was four foot six.
 
As I say my normal height was five foot six.
 
And how did you feel when you started losing your shape and …?
 
I didn’t notice it. I didn’t notice it for a long while. It was only, the first thing I really, that really drew it to my attention was that I had nightdresses which came down to here and before I knew where it was they were trailing on the floor, and I thought oh well my nightdresses can’t have stretched because they were cotton and you know, they are not like wool or anything like that that would stretch and I thought oh well it must be me shrinking. It was then that I asked them about it, and then they started measuring me.
 
Okay, so it happened quite gradually?
 
Oh yes, yes. It did. Oh it must have been a good five or six years that I was to-ing and fro-ing and not really being told the full story, of it, and what it was. I wasn’t given any idea.
 
What do you mean, do you think that you were not being told everything?
 
Yes. No it wasn’t being explained to me.
I asked different people, but you don’t get a straight answer.
 
Do you remember what you…?
 
No I can’t remember much.
 
Were you worried about it?
 
Not particularly at the time. Because it wasn’t particularly painful. I didn’t seem to be in any great deal of agony of pain. Well then you don’t notice it you know.
 
So you started noticing just when your nightdresses were longer than …?
 
Yes.
 
Okay. And did you have problems finding clothes to fit?
 
Yes.
 
After a while, yes.
 
I can’t wear a bra now. Because my back is a lot bigger than my front [laughs]. And then they don’t, you know, I can’t get comfortable. 
 

Joan was put on a high dosage of steroids to treat a suspected haemolytic anemia. After nine...

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I think it was round about 1994, something like that, that I originally went to the doctor. I had been so tired over the Christmas. When we came home, because we always go to our daughter’s for Christmas, when we came home, I went to the doctor. He took my blood, my blood pressure or something, and then said, “Oh you must go to the haematology department. And let them see. You have got some form of anaemia.” Which they whittled down eventually to haemolytic anemia. And they said they could put that right, by giving me some tablets.
 
Well the first lot didn’t have any effect whatsoever. I don’t even know what they were. And then they eventually put me on steroids. Well they started off with quite a low dose, I was taking something like two or three in the morning and two or three in the evening, till they were upping and upping and upping them. Every time I’d go back for a check up, it wouldn’t be any different or it would be worse or something. And then they would increase the steroids, so in the end I was taking 24 per day of 5 mgs tablets. They were, I was taking 12 in the morning and 12 in the evening.
 
And that went on for about nine months. And although every body said I was taking a high dose, nobody told me anything other than it was all right to take them. And of course I went on taking them till in the end they decided, well they weren’t having any effect on the blood treatment I was supposed to be having, and the only thing was to remove the spleen. So they removed the spleen and put my blood right and of course I stopped taking the osteoporo…, the steroids.
 
Well after some little while, I don’t recall how it really happened, but I was going to the haematology department regular, on a regular basis to check the blood and some how or other they found out that, at least I star… my back started curving and somebody noticed it, and then they investigated and found that yes I had osteoporosis.
 
I think they did a bone scan then and then they found out it was very widespread and you know, there was not really much they could do about it.
 

Joan’s husband was able to have a holiday in Norway because all the arrangements for his wife’s...

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Husband' I have just come back from Norway.
 
You?
 
Husband' Norway for five days. [daughter] arranged all that and came with me you see. Joan went up to the other daughter’s. It gives Joan a break and it gives me a break as well. As I say without the two girls we just couldn’t manage.
Oh yes. No.
 
That and the telephone is the biggie. The telephone means Joan has somebody to talk to. If we want any services, it is always on the other end.
 
They can chase somebody. And that helps a hell of a lot.
 
That’s good. And when you go to your daughter’s house…?
 
Joan' Well they bring a bed downstairs for me. Because you see there is no stair lift there. So they bring the bed downstairs. Both of them do the same thing. Bring a single bed downstairs. Put it in a room downstairs and there I stay.
 
Husband' The oxygen people are good when we are going, they send all the kit there. It is waiting for us when we get there. Use it and we telephone them to say when we are coming back, and when we are they come and collect it all and bring it back again. They are an absolutely marvellous service I think.
 
Joan' Yes, very good.
 
Which service is this?
 
Joan' It’s the … well they call themselves Air Products but they are very good. They supply all the oxygen and the machines and I mean I have got a converter out in the hall and that takes the oxygen and pumps it through to me, so …
 
Husband' And they say if you want us ring and we’ll be there within the hour.
 
Joan' They promise to be there every day.
 
And they keep their promise and they are very conscious I think of the job they do.
 

Joan and her husband have found ways to overcome difficulties with cooking and shopping. A stair...

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Joan' Oh yes, I can’t do what I could do a couple of months ago, or six months ago. There are things that are getting... that bit harder all the time. And of course my breathing is not what it was a few months ago. So that’s getting worse all the time.
 
Okay when you were first diagnosed with osteoporosis were you able to do most things?
 
Joan' Oh yes. I was doing everything then and I mean it’s only gradually that it has gone worse and worse.
 
I mean I still manage to see to the food, get the dinner, cook the dinner and then [husband] dishes it up because I’m afraid of using the handle, the saucepans, there’s something wrong with my shoulder at the moment. I can’t lift the saucepans and turn it. So he now dishes the food out.
 
And what about standing up. Can you stand up for a little bit?
 
Joan' No. Yes, but not for long. Not for very long.
 
Okay.
 
Joan' So most of the stuff, and of course we buy a lot of these ready made meals. So that’s just a matter of putting it in the oven.
 
What other equipment do you have in the house to help you?
 
Joan' Nothing much else. Oh the zimmer.

 

Husband' The zimmer. And walking sticks and me. Like going down the steps I used to do. They are so tricky and Joan daren’t think about walking down them, unless I was on the steps with her. We negotiate those with the walking stick and my arm. And the car is two yards away, so it’s a couple of steps and she’s into the car and then when we get to the supermarket I go and fetch one of their chairs then and bring it round to the door, sit her on it, and then on the run we go. We come back like a Christmas tree with stuff all over it. But we manage and it’s a bit exciting the that’s the thing. We think we’ve beat it, we’ve won.
 
Husband' We have a stair lift. So Joan can go upstairs without any problems. Without being in danger of falling, which gives her a bit, shall we say, a bigger horizon than just staying down here in one room. Then we have a bath lift. Which again is a marvellous idea. And with a wheelchair thank goodness I can still drive. We’re able to move about a bit. Without it life would be very difficult wouldn’t it. All of this we did ourselves.
 
You didn’t have any help from…?
 
Joan' No.
 
Husband' No we did it ourselves.
 
Joan' We paid for the stair lift ourselves. We put the bath lift in ourselves. At least my husband has got it and done it.