Val

Age at interview: 62

Age at diagnosis: 57

Brief Outline: Val, age 62, was diagnosed with asthma at 57 although looking back she now feels that she may have had it for a few years before that. She is white British and married with three adult step children. She is a self-employed researcher and lecturer. Val was surprised to find that asthma can start later in life, especially because she has always been very fit and healthy. She initially put her symptoms down to getting older.

More about me...

Val is in her sixties and was diagnosed with asthma 6 years ago but suspects she has had it much longer. Val has always been very fit and she recalls instances before diagnosis when she was unexpectedly breathless. At the time she put this down to ageing, but now recognises that it was her asthma. She eventually sought medical help after a work colleague noticed her becoming breathless and suggested she saw her GP.

The GP organised a spirometry test to measure Val’s lung capacity and prescribed a reliever inhaler. Two weeks later she had a follow up appointment to discuss the results of the spirometry test. The GP showed her a graph which indicated she had severe breathing problems. She was then referred to a hospital consultant. The hospital consultant confirmed she had asthma, prescribed more inhalers and gave her advice on how to manage her asthma. Val was surprised to be diagnosed with asthma; firstly because she didn’t realise people could develop asthma as adults and secondly because she considered herself to be very fit and healthy.

Val now has yearly check-ups with her GP. She explains how her GP prescribes baseline medication as well as allowing her to take additional medication when she feels it’s needed. She also describes how her chemist provides useful advice about medication and its effects. She manages with her asthma by being aware of environments that may trigger breathing problems and always taking an inhaler to prevent an attack. She makes sure that she has reliever inhalers in all her coat pockets and handbags so she always has one to hand if needed. She stresses the importance of staying calm when having difficulties breathing because she believes panicking makes it worse. Val describes her asthma as being well controlled and she has never had an emergency attack.

There are certain lifestyle changes that Val has made since being diagnosed with asthma. She stopped swimming and mountain climbing. She can no longer do gardening because pollen aggravates her asthma. She has put laminate flooring in her home to prevent dust mites and avoids using cleaning products with chemicals. Val has taken all these adaptations in her stride and maintains a positive attitude.

Val’s husband has been very supportive and although sometime he worries, he always remains calm. She has also found support from online forums for people with asthma. She describes how discussing experiences with others has helped her to feel reassured. Val feels lucky that she has been prescribed effective medication and that she is able to control and stabilise her condition. She advises others who are experiencing breathing difficulties to seek medical help and not dismiss it as ageing like she did.

Val had led a fit and active life until she got asthma in her 50s; the diagnosis shocked her.

Did you know that people could get asthma later on in life or develop it at some stage in their life?

No. Well I should have, because again looking back now, my grandmother had it and my mother’s sister had it very, very, very severely and in fact died of an asthma attack - but in her seventies, you know, and she was always in and out of hospital with it. So I should have realised that you could get it, but no, just wasn’t sure… I might get it as an adult. I just assumed people got it as young children and kept it or got rid of it, ‘cause I know children now can reduce or get rid of their symptoms, but I hadn’t realised that you could be diagnosed as an adult with it.

I mean how did you actually feel yourself about your diagnosis?

I was really shocked, ‘cause I just thought ‘how can someone as fit as me get asthma?’ [laughs]. You know, I was just, but again looking back when I was in my forties I used to do a lot of rock climbing, mountain climbing, and I used to be able to climb some of the highest mountains in Europe and I think one of the first attacks I got, I’d done this mountain two or three years previously, this was some kind of organised group trips. And then I tried to do it again three years later and I thought I was going to die, honestly I just couldn’t breathe and I thought ‘this isn’t right, I can’t be that much less fit than I was three years ago’, and I suppose I should have realised then really that there was something wrong.

Val asked her GP to check her breathing. A Spirometry test showed her breathing was quite bad. Trying a preventive inhaler helped to reach a diagnosis

I went to the GP for something else, and I said, “While I’m here could you check my breathing?” and she kind of was a little bit dismissive at first. She, she examined my lungs and she, she you know, kind of did some on the spot things. But, in all fairness, she said, “Well, we’d better get you a spirometry test.” So she arranged that with the nurse and that happened within four or five days, something.

I had the spirometry test with the nurse and she kind of took the results but didn’t say anything and then she said to me, “Did the doctor ask to see you again?”

The doctor had given me a blue inhaler, but kind of hadn’t shown me how to use it. So the nurse actually showed me how to use the blue inhaler and then she said I should make an appointment, and go back and see the doctor. And the doctor actually got a graph of my breathing printed out for me to look at and kind of my breathing went underneath the line of the graph so I did have quite severe breathing problems. And she spent a long time discussing it with me, how I thought I might have got them.

Because I hadn’t, in fact, I used to smoke but only about five a week something and I finished in 1978 and after that I was really fit - I used to rock climb, mountain climb etc. and all I could put it down to was that I remember my first symptoms first starting when I lived in the country quite near here and they had sprayed fields behind the house - they used to spray fields every night. And there were three women of my age and we all kind of developed symptoms at the same time throats and hay fever and what have you.

So the doctor then asked me to go back. She put me on the brown inhaler which is a preventer inhaler and she put me on a very high dose. And she asked me to go back in two months’ time for what’s called a reversibility test to see whether your symptoms have improved on the preventer inhaler.

So I had that appointment in the January. So the first appointment was in the November and I had that appointment in the January - and I went back and they hadn’t improved at all. So, she referred me to the hospital to a consultant at the hospital and the consultants confirmed that I had got in fact, quite severe asthma, which unfortunately has actually got worse since then as well. So, I was put on a preventer inhaler and I was given kind of some advice about how to deal with the asthma.

Val was referred to have a spirometry test when she visited the surgery with breathing problems.

It’s kind of a lung function test. There’s a lot of controversy because a lot of people don’t get an accurate diagnosis initially because they don’t have the test I’ve kind of learnt quite a lot about the condition since I’ve had it [laughs] and I’ve recognised that I was actually very lucky to get one of these tests. It’s, you breathe kind of into a machine, it’s just like, it’s very quick, it’s just about 20 minutes, you breathe into a machine, and the nurse takes three readings on that machine, and then she gives you some blue inhaler and you have to wait five minutes, and go back in, and see whether the blue inhaler has helped your breathing at all, see whether it brings your kind of baseline breathing up.

The reversibility test is then if you, you are discovered to have asthma, you’re put onto these quite large doses of what’s called a preventer inhaler [inhales] and you go back and for a lot of people then, they’re okay, and they can kind of manage either on a very small dose of preventer inhaler with a reliever inhaler, or with people in my condition, you have to stay on the preventer inhaler.

When I went to the hospital, the consultant said she wanted more tests and I said I’d just had the spirometry test, but she said they had kind of equipment to do even better and deeper diagnosis kind of thing [inhales]. So, it’s like a way really it’s a way that all everybody who has breathing problems should have the opportunity to have a spirometry test, but from what I understand, a lot of people don’t get that opportunity, they just are given a diagnosis kind of thing.

Val explains how it feels as if her breath is 'stuck' when she is asthmatic and how she tries to keep calm.

Sometimes it feels like…your, my breath is stuck so I can’t breathe out . Sometimes it’s wheezing, like I explained in the winter, I can walk down the road and I just can’t stop wheezing. Often it’s coughing, so I just cough and cough and cough for no reason sometimes, and anything can kind of trigger the coughing. So it’s mainly those breathlessness, coughing and wheezing…are the main symptoms.

I notice you said that you try not to panic too much…

I try not to panic. So for instance the other day I had two coughing attacks and I just kind of think ‘I mustn’t panic’, I’ve got to try and stop the coughing with the inhaler and normally I can do that. I can take the blue inhaler and stop the coughing.

So does it help to kind of remember back to know that it will subside?

Yes, absolutely, yes. Or, if I can’t, if I feel tight-chest - tight-chestedness is the other thing - if I feel tight-chested I’ll kind of think it will sort itself out. I know it will sort itself out. If I haven’t, my feeling is if I haven’t had an emergency attack by now, I’m hopefully not going to get one if I do not panic and just take the inhaler and just wait until it sorts itself out.

And sometimes that requires a fair amount of blue inhaler, but most times it will just require maybe two or three doses and it sorts itself out.

It sounds like that’s quite an important part of it. I’ve heard people say that if you get into a panic attack then it can actually exacerbate…

Yes, yes, no I think that is really important and I kind of decided I would do that from the beginning kind of reading about it and realising that panicking made it worse and anxiety made it worse. I decided very early on that the thing I mustn’t do is panic when I have an attack.

Val’s treatment was recently reviewed at the asthma clinic. She feels supported in controlling her own medication, including taking steroid tablets, when she needs to.

I thought I was doing most of the things I should be doing anyway, so I do, I mean one of the things that both consultant and the GP said is to keep yourself as fit as possible, which I, which I do. I go to the gym - but - things like mountain climbing and walking are now, well I walk but I can’t climb mountains any more, I get just too, too breathless with it kind of thing.

So since then I’ve taken the brown inhaler and the blue inhaler and then I see the doctor every twelve months, or I can go more regularly if I need to. And then I was put on another inhaler at my next visit called Serevent, so I have to take that daily as well.

And then I went for a flu injection about eighteen months, two years ago, it was during the swine flu period. And I went for this injection and the nurse who did the injection, said, “Have you had an asthma check recently?” and I said, “No,” and she said, “Well, would you like to come in and I’ll give you one?”

So I went in, and in fact just before that, that year, which is about two years ago, I’d also had a chest infection, and then I’d had to go back again because I couldn’t stop coughing. It was like, I was eating dust all the time. So the GP had put me on a dose of steroids - a different GP had put me on a dose of steroids at that stage. But in fact the nurse did another test and my breathing was kind of worse than ever, even though I’d been put on these steroids, so I went back to the doctor and I was sent for another chest x-ray, just to make sure it wasn’t my lungs and it wasn’t, it was the airways that were obviously the major problem. And then she put me on some tablets [laughs].

But in all fairness to the doctors they allow me to control my own medication, so I have like a baseline of medication but I can go above that, I can kind of take the tablets, take the steroids, do what I think I need to do when I need to do it, kind of thing. So I don’t have to keep going back to the doctor every time I have a deterioration.

Val likes the fact that her GP trusts her judgement. Being able to alter her medication according to how she is feeling gives her more control.

I also kind of feel quite lucky about the self control of my medication, because I think that kind of, you know, there’s all this stuff about the expert patient and the patient knows best? So I feel you know, I feel quite lucky that I’ve got a GP that’s allowed me to do that rather than having to kind of live with the symptoms or keep having to go back all the time.

So you’ve got that element of control?

Yes.

…control over your life?

Yes, I have control. I know the minimum but I can then vary the maximum depending on how I feel about it, and I think that’s really good, because you know, it does give you some control over you know, what you do and when you do it.

Do you think you have to be a certain type of personality or character to be able to have the confidence to do that?

Yeah, because as I say, sometimes I wonder if I’m doing things right, but the subjective evidence which is what my GP believes in is that I probably am, because I haven’t had any emergency admissions to hospital.

So always relate to how you’re feeling?

Yes, it always relates to how I’m feeling. Yes.

Val used the internet to find out more about asthma when she was first diagnosed, and through that got involved as a volunteer for Asthma UK.

Initially I looked up everything I possibly could [laughs], you know, when I was first diagnosed I spent hours looking at you know, what, what caused it. There’s no cure for asthma, so it’s about controlling the symptoms, as much as possible. Then I saw an advert actually in the paper for Asthma UK wanting policy and research volunteers, so I kind of responded to that advert and I mean they’re great because you meet a lot of people who kind of have, you know, the same condition as you do. And it’s an opportunity to share things. You can get involved in DH things. You can get involved in Foundation Grant man… So it’s all adding to your knowledge about, you know, the condition. And what people are trying to do and what is kind of, what can be done and things like that.

I mean so was that a conscious decision to get involved in order to kind of meet up with other people and so on?

Yes. Yes. And to learn or, yes. Yes, it was a conscious decision.

So I mean do you think there, does it help to talk to other people about those experiences?

Yeah, I mean most, the stuff is done online in all fairness, so you might, I mean you’re only meeting people if it’s something specific, but there are online forums so you can you know, join in the online chats and forums, and discussions and things like that.

Have you done that?

Yes, I do that, I do that occasionally. I kind of, I worry a little bit about too much knowledge being a bad thing. Do you know what I mean? So I kind of have to think, well I probably went for several years with this thinking it was my health when, thinking it was my age, when in fact it wasn’t and I perhaps should have got something done earlier about it. So I do, I think there’s a kind of tension and a conflict between you know, self control and seeking advice from professionals and what have you. But I do get most of my knowledge I have to say online.

What benefits might there be to sharing experiences on the internet? I mean either about asthma or more generally would you think?

Well I think there are, I think there are a lot of benefits actually. You can always see there’s someone with the same symptoms as you or, you know, if not worse than you kind of thing. And that’s that is one of the things I think about online forums is that they can be quite reassuring in the sense that you’re not the only person that’s living with this condition and these symptoms and it also... I mean the thing about asthma is it’s, you know, sometimes one of the things I felt, when I saw the consultant at the hospital was, it was a kind of it’s a your fault situation almost, you, you, you could have stopped yourself. I mean she still put in the notes ‘smoked ‘til 1978’. Now I know there was no way that the few cigarettes I smoked, you know, up ‘til 30 years ago have caused this, because throughout my forties I was as fit as a top. You know, I might have had the conditions there. So I think it’s kind of supportive to be able to share with people this, it’s kind of an empowering experience I think to be able to share with people that, what other people have been put in the same situation and you know damn well it’s not your fault, you know, that it’s the fault of the environment or you know, your genes or your family history or whatever. But I know it’s not my fault that I’ve got this condition.

Online forums can reassure you that you’re not the only person living with the condition managing similar symptoms.

Well I think there are a lot of benefits actually. You can always see there’s someone with the same symptoms as you or, you know, if not worse than you kind of thing. And that’s that is one of the things I think about online forums is that they can be quite reassuring in the sense that you’re not the only person that’s living with this condition and these symptoms and it also... I mean the thing about asthma is it’s, you know, sometimes one of the things I felt, when I saw the consultant at the hospital was, it was a kind of it’s a your fault situation almost, you, you, you could have stopped yourself. I mean she still put in the notes ‘smoked ‘til 1978’. Now I know there was no way that the few cigarettes I smoked, you know, up ‘til 30 years ago have caused this, because throughout my forties I was as fit as a lop. You know, I might have had the conditions there. So I think it’s kind of supportive to be able to share with people this, it’s kind of an empowering experience I think to be able to share with people that, what other people have been put in the same situation and you know damn well it’s not your fault, you know, that it’s the fault of the environment or you know, your genes or your family history or whatever. But I know it’s not my fault that I’ve got this condition.