Margaret

Age at interview: 62

Age at diagnosis: 47

Brief Outline: Margaret, age 62, was diagnosed with asthma at age 47. She is white British, married and worked as a statistician before retirement. Margaret had had a persistent cough for some time, and one day started feeling so breathless that she went to the hospital where she was told she had pneumonia, and was also suffering from asthma. At first she wasn’t using the inhalers correctly and her condition was often unstable, but after a time she became more knowledgeable about how to manage the condition more effectively and is now rarely bothered by her asthma.

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Margaret had been suffering from a persistent cough that she hadn’t been able to shake off for a while and one day found herself feeling very breathless. Things became so difficult that she was taken to hospital where she was diagnosed with pneumonia, but she was also diagnosed with asthma. Margaret felt quite upset at first to have been diagnosed with asthma because up until then she had been very fit and healthy and had always made a point of living a very healthy lifestyle. In the first few years after diagnosis Margaret says she didn’t manage her condition very well, and in retrospect realises that she hadn’t been shown how to use the inhaler correctly and so wasn’t getting enough of the inhaled steroids to keep her stable. At that time she would intermittently need to go to the GP for a course of oral steroids to help stabilise her condition and she describes her asthma at that time as being mild to moderate.

A few years ago she had what she calls a ‘cataclysmic asthma attack’ where she was rushed in to hospital as an emergency and was in a life threatening situation for a short while. After this she was prescribed a new combined inhaler Symbicort, which she feels has been far more effective in managing her condition. Since then she feels that her asthma is much better controlled and she now describes her condition as mild to moderate. She hasn’t had to use oral steroids at all for the last 3 years, which she feels indicates that she is now managing things much more effectively. Her self -management techniques include ensuring that she uses the inhalers in the correct way and to always take the medication even if she is feeling well. She also takes regular exercise and feels that helps to keep her lungs functioning as well as possible.

Margaret feels that initially she wasn’t given all that much information or support from health professionals in that after her diagnosis she was left to get on with things herself and hadn’t been taught how to use the inhalers properly. It was only some years later when she attended a talk by a nurse who has asthma herself who was demonstrating how to use an inhaler that she realised that her technique wasn’t quite right.

Although she accepts that asthma is a condition she is likely to have for the rest of her life, Margaret is more confident about managing it nowadays, and recently has been able to slowly start to reduce her medication, with the intention or aim of being on the lowest dose possible to keep her stable.

Margaret isn’t able to say what her triggers are. She has had allergy tests but not pinpointed anything in particular that triggers her asthma. Nevertheless she ensures that things in the house are as clean and dust free as possible just to minimise any possible irritants.

Although she has had her peak flow tested at times when her asthma has been less stable she feels that the peak flow measure isn’t always a good indicator of lung function as she is aware that although hers is low on the scale generally she is still able to swim and function even though her reading would be seen by doctors as being too low but she feels that she is a good judge of how her own body feels and so isn’t too focused on worrying about what her peak flow measure is.

Margaret takes a positive approach to life and has learned how to successfully manage and control her asthma so that nowadays it doesn’t interfere with her life.

Margaret describes an occasion when she had to go to hospital for an acute asthma attack.

Can you describe when you had catastrophic attack how that, actually what you were feeling. Did it come on quite suddenly?

It did. I, we went to, we went to the doctor very early on, I said, you know, I woke up and I could tell the night before I wasn’t feeling too good. And I said to my husband, “I just need to go.” You know, and we, it was at the time when it was walk in appointments. So we walked in and we, we were given the standard prescription for oral steroids and we then went, we went to Sainsbury’s shopping and I can remember just sort of, I don’t know how I got round, but there was a pharmacy there and that’s why we’d been there. And we got back and I said to my husband, “I’ve, I’ve just got to sit in the car.” Because we live up 25 steps so [laughs] it wasn’t a case of just walking into our house. And he just took me back down to the doctor, who then, you know, rang forward to the hospital. And when I got in there, I wasn’t actually frightened, I can actually remember actually kneeling by the bed, because that was the most comfortable way. You kneel and you lean forward. And I actually can remember thinking if I die. I die.

Did you think it could happen?

It could happen, but there was no sort of panic about it because you get to a point where you think…

You go with it…?

Let’s just go with it. You can’t, you can’t really fight. You know, you can only just do whatever you know, sort of, sort of try and relax yourself. And it was just, there was a 20 minute period where it was really bad. And I was being monitored every ten minutes. You know, blood pressure and I couldn’t when you’re in that state you can’t do a peak flow you know, [laughs] You know, you’ve got to use your, your breath for other things, than to give measurements to, to medical staff.

Did you have a nebuliser at that time?

Yes, I’d had a nebuliser and there was only, I mean I was having a nebuliser every, I don’t know, twenty minutes, you know.

And how soon did it pass off?

It passed off to bearable within less than two to three hours.

Margaret had a persistent cough and was diagnosed with pneumonia. Her symptoms became so bad one night that she went to the hospital for emergency treatment and was told that it looked like she also had asthma.

I was actually diagnosed with asthma round about my 47th birthday and it was not the best birthday present for me. I’d had a persistent cough through the summer - I’m a summer baby, and it got so bad that I presented at the local hospital in the middle of the night because I felt as if I couldn’t breathe and I was diagnosed with, with pneumonia. And then after that they said, “No, it wasn’t just pneumonia. It was all mixed up with asthma.”

So I left hospital with a plethora of, to me it seemed a plethora of drugs. An information book, produced by GlaxoSmithKline and really, I just got on with it. And probably looking back I didn’t actually manage things terribly well, because there is, when you first are diagnosed, especially the sort of age that I was diagnosed at, there was just that feeling of, well, just why me? You know, I’ve led a healthy life, I’ve never smoked, not even so much as a puff behind the bike shed. And suddenly this, sort of presented itself to me as a 47th birthday present. And it’s not one of the best ones I’ve had.

So I didn’t really manage it terribly well to begin with.

Margaret took her inhalers very regularly but her asthma seemed difficult to control. She realised she wasn’t using the right technique and since getting to grips with things has been able to reduce the dose of medication she needs.

Although I was compliant and taking my inhaled steroid every night, I don’t think my technique was correct. And consequently you know, years later I realised that I wasn’t getting the, you know, steroid down me, as much as I should.

I’m part of sort of a group that you know, talks, you know, sort of shares common experiences, I realised oh only in a couple of years ago when a nurse, who has asthma, came and was part of the group and she was demonstrating her inhaler technique and I thought I’m still not doing it quite right. And its, so I thought, I took that away and I thought this is what I do. And it has helped, because I’m starting to reduce the amount of medication I need.

So when you weren’t doing it right, were you not getting the right measured dose?

Well I probably, you know, the dose, you click the bottom and, of your inhaler and so it’s there ready to be inhaled. But if you, if you’ve got to take two doses and you, you, you breathe in and then you think oh click and you know, life, you know, you rush around and you think oh right get that done, you know, sort of tick that one off for this morning. And of course you aren’t allowing the, the sort of powder to go down and, and to settle as I think of it. And you sort of, you know, the second dose probably wasn’t terribly effective and now the nurse literally she, she showed how she took hers. She breathed in and then she literally counted her fingers slowly to ten, holding her breath in and then breathed out very gently before taking the second dose. And just that improvement and the technique was just useful to learn.

Margaret thinks it’s important that the general public get an understanding about asthma, but even so finds herself taking her medication in private. [Text only]

Not that I take a reliever very much, but I would never take a reliever in public.

Oh that’s interesting because lots of people have talked about whether they do or not. You still don’t?

No. Because I suppose now, because I’m that better controlled, yes.

So why would you not now?

I don’t know why. It was just like, it’s almost an admission of weakness, you know, there’s something…. You know, I don’t want to be seen as sickly as weak you know, but it’s not, you know, you’re not really sickly with it, it’s just something that’s just gone wrong. It’s a bit like, you know, you’ve got a knocking in a car engine or something like that. Something is just not quite right with the, the mechanics, and that’s something you have to…

Because that’s something that’s typical. I was just thinking do you think that generally enough is known about asthma, I mean because some people have said to me that they don’t take their inhaler public. So general public may not see you using inhalers behind that kind of consciousness?

Yes. I think so. And the other thing is, I know you don’t, we don’t want to scare the public, but the public has a very, very positive attitude after all. Paula Radcliffe runs marathons. Now that’s good, but it does have its downside, because the general public then doesn’t take asthma as a serious life threatening at times, life, and for some people life limiting condition. And we have to maintain a balance between the two, where yes, she probably has fantastic medical support to do that, to maintain her, you know, correct peak flow, and but we’re not all Paula Radcliffe. So we do need to have some sort of fairly strong messages that it’s not just a mild wheeze.

For Margaret the most important thing is to ensure that you are taking the medication correctly and regularly. ‘It’s just part of the morning and night routine, before you clean your teeth, you take your inhaler’.

It’s a routine I follow. I don’t risk my treatment, you know, I don’t miss taking my inhaler morning and night. That’s just so important, it’s just part of the morning and night routine, before you clean your teeth, you take your inhaler, breathe in, wait for ten seconds breathe out, if you need another dose you take it. And that’s been, you know, sort of, and I know it’s worked for me. So I just hope that anybody who is watching this and is worried, it’s worth just beating it. It’s a long term, at the moment a long term and what they call a chronic condition which I hate, I hate the terminology, but it doesn’t mean to say that it must rule your life.

Margaret has had some times when her asthma has gradually got worse and she has had to take more medication to get it under control, but she once had a serious attack and had to go to hospital.

Can you describe when you had catastrophic attack how that, actually what you were feeling. Did it come on quite suddenly?

It did. I, we went to the doctor very early on, I said, you know, I woke up and I could tell the night before I wasn’t feeling too good. And I said to my husband, “I just need to go.” You know, and we, it was at the time when it was walk in appointments. So we walked in and we, we were given the standard prescription for oral steroids and we then went, we went to Sainsbury’s shopping and I can remember just sort of, I don’t know how I got round, but there was a pharmacy there and that’s why we’d been there. And we got back and I said to my husband, “I’ve just got to sit in the car.” Because we live up 25 steps so [laughs] it wasn’t a case of just walking into our house. And he just took me back down to the doctor, who then, you know, rang forward to the hospital. And when I got in there, I wasn’t actually frightened, I can actually remember actually kneeling by the bed, because that was the most comfortable way. You kneel and you lean forward. And I actually can remember thinking if I die. I die.

Did you think it could happen?

It could happen, but there was no sort of panic about it because you get to a point where you think…

You go with it…?

Let’s just go with it. You can’t, you can’t really fight. You know, you can only just do whatever you know, sort of, sort of try and relax yourself. And it was just, there was a 20 minute period where it was really bad. And I was being monitored every ten minutes. You know, blood pressure and I couldn’t when you’re in that state you can’t do a peak flow you know, [laughs]. You know, you’ve got to use your breath for other things, than to give measurements to, to medical staff.

Did you have a nebuliser at that time?

Yes, I’d had a nebuliser and there was only, I mean I was having a nebuliser every, I don’t know, twenty minutes, you know.

And how soon did it pass off?

It passed off to bearable within less than two to three hours, because I can remember saying to my husband, “Have you fed the car park meter?” Because it was the time when we were still paying for car park. “Have you fed the car park meter?” And in some ways it was a way of just giving him, you know, an excuse to go, because it’s very distressing to see somebody, you know, in that state. I mean in some ways I was just forced to think about me and not to worry about, about the distress that he was obviously feeling.

Can you describe the actual feeling that you had during that attack? Was it just gasping for breath?

It’s not gasping. It’s that you know, you imagination breathing through the thinnest tube possible, you know, less than a straw, you know, just trying to get every little bit of air down, you know, that terrible constriction.

How long did you have to stay in hospital for?

For that one I think because I was I think I was on probably on the point of being what they call intubated. Which is a tube put down to help me breathe and with the drugs and the nebulisers I was just at the point of you know, of doing that and then I, everything seemed to relax after then, so the, I didn’t have to go into intensive, intensive care. Oh I can’t remember how long. I was in, I always seemed to have these things near a weekend and like most hospitals it just becomes a crèche at the weekends and nothing happens. If it had happened on a Monday, I dare say I would have been out on the Thursday or the Friday, but because it happened you know, and I was finally admitted on Wednesday night. That was it. I was in there until the following Monday.

Margaret felt her GP was insensitive when he wrote ‘asthma’ on her medical records, as if she was now going to be defined by having asthma. She realised later that the GP should have given her more information about how to use inhalers.

I remember the first time I visited my GP after I had that all diagnosed. I was quite happy, I’m just a person, you know, I’ve got asthma. But as I walked in to his surgery, he was obviously got the old style sort of folder of notes and he got out a stamp. A big red stamp and it had stamped on my notes and it said ‘Asthma’ and I thought that’s my label for the rest of my life. And that was, I was cross about that, because I thought that was insensitive and I don’t think he realised what he was doing because he obviously categorises his patients but he could have done it a little more discretely and [laughs] I mean up to then I just thought well it’s just one of those things. Some people have got diabetes. Other people have got high blood pressure, but this was real, you know, he might have sort of stamped it on my forehead, yes [laughs].

I mean you’ve talked also about your treatment that you had in the beginning, you weren’t really quite au fait with what to do. Did nobody show you how to use the inhalers properly?

Oh no.

So you were just given them and had to work out…?

Yes.

They didn’t check that you were…?

Yes, yes, and in fact because... I’m part of sort of a group that you know, talks, you know, sort of shares common experiences, I realised oh only in a couple of years ago when a nurse, who has asthma, came and was part of the group and she was demonstrating her inhaler technique and I thought I’m still not doing it quite right. And its, so I thought, I took that away and I thought this is what I do. And it has helped, because I’m starting to reduce the amount of medication I need.