Ann

Age at interview: 55

Age at diagnosis: 53

Brief Outline: Ann, age 55, was diagnosed with late onset asthma two years ago when she was 53. She is white British, married and has semi-retired from her work in health related research as she was recently made redundant. She is currently thinking about starting a new career teaching English. It took some while for a correct diagnosis to be given and during this time Ann became anxious and worried about what might be wrong with her. After initial diagnosis she was prescribed inhaled steroids but it took about six months to find the right dose and combination. Ann is still finding it difficult sometimes to adjust to some of the lifestyle changes that she has had to make since she was diagnosed.

More about me...

Ann was diagnosed with Asthma when she was 53. One day she was driving to work when she found herself very short of breath. She thought maybe things would ease off but the next day she still felt unable to breathe properly so she went to see the GP who sent her to the local hospital for tests. There was some delay in getting a referral to see a respiratory specialist partly due to being in the midst of moving house and having to switch GP’s and during this time she became increasingly anxious because she continued to feel extremely unwell but had been given no medication to help with the symptoms.

Once it was established that she seemed to be suffering from asthma, her new GP started her off using a Ventolin inhaler and a low dose preventative inhaler, then once referred to the respiratory clinic she tried a range of inhaled steroid inhalers to see what dose or combination would stabilise her condition. Initially she found that using the Ventolin inhaler made her heart race and she began to have panic attacks. In addition, she found it difficult to come to terms with having asthma and became depressed and anxious, which sometimes exacerbated the symptoms. Two years on she is now taking a relatively high dose of inhaled steroid regularly morning and evening, and sometimes if she gets a cold or infection she may also need to take a course of oral steroids, although this has not occurred to date.

Ann recalls that sometimes in the early days she felt almost suicidal – however she was not keen to begin to take anti depressant medication. With the help of talking therapy which has enabled her to learn strategies to manage her anxiety she is starting to feel much more hopeful about the future. One of the things she has found difficult have been the changes that she has had to make to her life because of her asthma. For the first six months after diagnosis Ann took sick leave from work and although she was able to return, she went part time. However, last year she was made redundant and she is now re-thinking her work/life balance and hoping to re-enter the workplace having re-trained to do a different job that she feels might provide her with the flexibility she feels she needs to ensure that she can continue to manage her asthma. Having always worked full time and been financially independent she has had to come to terms with having to rely on her husband at the present moment and she worries that she will not be offered jobs if employers know about her limitations, and her age.

Ann’s asthma is often triggered by cold weather and changes in temperature and humidity and so she now finds herself having to be careful about where she goes, when she goes out, and what activities she participates in. Ann has always enjoyed outdoor activities and now finds that things she used to be able to do like hill walking in remote areas are out of bounds – so she is working on finding new interests and things to occupy her free time.

As a general rule she says she finds it best to focus her thoughts on what she can do, rather than on what she can’t – although sometimes she says this can be difficult to achieve.

Ann had liked singing along with the radio in the car, but one day she became so short of breath she couldn’t sing.

I was working about 25 miles away from home, and I used to... come out of work in the evening, get into my car, turn the radio on, find a pop station, and I’d be singing along to the music all the way home. But on this one particular day I found that I just couldn’t sing, and I was very, very short of breath, and it was a very new experience for me, that hadn’t really happened to me before, so I thought to myself, ok.... I don’t like this very much but let’s just see what happens in the morning. And because my husband works away from home most of the time on that particular day and evening I was at home by myself, but on that particular day I was preparing for the move. 

But the following morning when I woke up in the morning to go to work I was really short of breath and I was really scared. I’d never had that experience before, so I rang my work and said I wouldn’t be coming in, I rang my GP surgery and made an appointment

Ann was going through the menopause when she first experienced asthma. She later discovered through Asthma UK that a drop in hormone levels can trigger asthma in some women.

What I now, what I now believe again, and if it hadn't been for the Asthma UK website I wouldn't have understood this. But at the time that I became very ill I was going through the menopause. And I had a very long, period running up to the menopause when I had perimenopausal symptoms. But nowhere had I ever come across information about how some women going through the menopause – when their hormonal levels really drop away, which is what I think happened to me, it, they lose their protection in a sense, hormones protect against inflammatory illness. And I think that's the most likely explanation of why I had the onset of severe asthma when I did. And yet when I speak to the health professionals who I've seen, many of them are totally unaware of this as an explanatory factor and I think I'm not sure to what extent they accept it. That's, that’s the health professionals that I've come across.

But it certainly explains my personal experience.

Ann eventually suggested to her GP that as she had a family history of asthma, it might be worth trying asthma medication

And I think that in fact she did start me on some asthma medication before I saw the consultant. But, it, she wanted to start me on low doses, so but she didn't do that spontaneously as it were. It wasn't, I had to ask, I had to go back several times with my condition deteriorating.

And of course at that point she didn't know me very well so, it may be that I hadn't given her the information that she needed about my family history. But one day I was in such, I had such a lot of chest pain and I just couldn't breathe that I just made myself an emergency appointment and said to her, “Look I think it's asthma, I've got this family history, of very severe asthma in several family members I'm in such pain, would you not think it appropriate to try and prescribe me some asthma medication and let's just see if that improves my condition.” So in a sense I diagnosed myself, but she did agree to that and that's when I started on some fairly low doses of Ventolin plus a Beclazone inhaler and that did help me.

Ann describes how the doctors explored other possible causes for her breathing difficulties when she first went to the hospital.

And I was working about 25 miles away from home, and I used to... come out of work in the evening, get into my car, turn the radio on, find a pop station, and I’d be singing along to the music all the way home. But on this one particular day I found that I just couldn’t sing, and I was very, very short of breath, and it was a very new experience for me, that hadn’t really happened to me before, so I thought to myself, ok.... I don’t like this very much but let’s just see what happens in the morning. And because my husband works away from home most of the time on that particular day and evening I was at home by myself, but on that particular day I was preparing for the move.

But the following morning when I woke up in the morning to go to work I was really short of breath and I was really scared. I’d never had that experience before, so I rang my work and said I wouldn’t be coming in, I rang my GP surgery and made an appointment, and I had a good relationship with my GP, and he’d been treating me for about 10 years so he knew me quite well and when I actually walked in to his surgery he could see immediately that I was having very severe breathing problems. He started to panic, and of course that made me very worried. I’m not sure ‘panic’ is quite the right word, but he took it extremely seriously, and he immediately rang for an ambulance to take me to the local district general hospital, and before very long the ambulance turned up. At that point I couldn’t talk, I was given oxygen, put in the ambulance, I was taken off to the hospital and taken immediately onto a ward rather than just A&E, and at that point things just stopped really. I was put on a bed and my blood pressure was taken, a junior doctor came to talk to me, got some basic information about me and what had happened in the last 24 hours. She explained that I was going to have a chest x ray because my GP was concerned that I might have a blood clot on the lung and although it wasn’t very likely it was very sensible to have that checked out. So there I was, I was put on the bed and I was left alone for quite a long time. I was very anxious and very worried about what was happening. My husband was quite a long way away and there was no point in trying to get in touch with him at that stage um, so after some time I was wheeled off and I had my chest x ray. And actually I don’t remember very much about that ...it’s all a bit of a blur.

But I had my chest x-ray. I was brought back to the ward, put back on the bed. And then I just lay there for about an hour, again sort of left to my own devices. I had actually brought a book with me because I knew that sometimes when I went to see my GP I'd have to wait awhile if he was running late. So I, I read a bit. And gradually as I lay there my breathing began to normalize, but I didn't really have much of a clue what was going on. My first reaction was that I think I've probably got a bad, having a bad asthma attack. Only because there's a lot of asthma in my family so although, I've never had this experience before. I was, I was half my mind was on my book and half my mind was thinking about, to try and understand what was happening to me, and that seemed to me the most likely explanation.

So after about an hour or so, I was told that I could get up, get dressed and go and sit in a waiting room, which was adjacent to the ward so that's what I did. It was very crowded, very hot for the people in there, kind of waiting. After about another forty-five minutes I was called out by a junior doctor, a different doctor to the person who'd spoken to me previously. It was a young man. So basically, he just called me out onto the corridor we stood there by the nurses’ station and he said that, “Well I've, I’ve looked at your chest x-ray, it looks absolutely fine, you don't have a blood clot but your heart is enlarged and that could be the cause of your breathing problems so you can go home now but you need to go back to your GP and ask them to refer you to us again for an investigation of your heart.” And I was just absolutely dumb struck. And I think of myself as quite an articulate person but the way that he just gave me this information, standing there in the corridor with loads of people all around. I was really shocked because I'd always believed that I had a, a healthy heart from everything, I’ve known previously. 

Ann’s GP practice does not seem to have a regular review system and she finds it difficult to know when to seek help or how to judge if her asthma is well controlled.

My asthma has worsened a little bit but because I’m at the time of my life where I’m going through menopause and I’ve recently been advised to stop using HRT, which I've been using for over fourteen years. It’s really hard for me to work out what's going on with my body. But what I do know for sure is that I’ve got to try and look after every aspect of myself, my mental health, my emotional health, my physical health. And try to find a way forward where I don’t have to make too many compromises.

Where are you at now with your medications being monitored? Are you still seeing a consultant...

Well...

..in the Respiratory...

I haven’t seen a consultant for over a year and the way that it was left I could ring the department if I felt that I needed to see somebody. And there’ve been times in the last few months where I thought “Well maybe that's what I need to do.” And then I've changed my mind because my symptoms come and go. And what I feel I don’t have, is I don’t have any kind of benchmark of understanding whether my symptoms are under control or not. And that's the kind of information that that I feel I need to discuss with someone. What happens is that I might have a bad week and think “Right, yes. I need to make that phone call.” Because I feel, I need and want to talk to a consultant. And then the symptoms will improve and I think “Well actually maybe I am managing.” So I’m really unsure.

Recently I’ve found out through reading Asthma UK information leaflets that actually it's the care I've received is actually not so good. So I would say take advantage of the information about best practice that's available through Asthma UK. Read that, think about your own experiences and then if you feel that you’re not receiving the, the level of care that reads like the best practice then talk to your GP, talk to your asthma nurse if you have one and just ask questions. Now, I haven't quite got to that stage yet but I'm just about at the point where I feel I know that I'm dissatisfied with my experience and I'm just trying to work out what I'm going to do about that and how I'm going to handle it. But I'm sure that if It's happened to me it could well happen to other people.

So it's a good idea to have a general idea of what the best practice is.

To, what the best practice is and aim to find ways to get that for yourself.

And which aspects of best practice do you feel have not come into play for you?

Oh, I've had no kind of regular reviews, no kind of monitoring on how I'm getting on after the first twelve months and [aeroplane overhead] I'm sure my consultant had the best of intentions when he said, “I'm going to trust you to get in touch with us if you feel you need to talk through what's happening to you”. But, either, and I consider myself to be someone who’s quite assertive outside the kind of health area but it's just so difficult to know whether I need help and what kind of help I might need. So I think in, in looking back at it now I think it would be much wiser for there to be a regular system of recalls, at least once every twelve months and that's not my experience

Ann always makes sure she has her medication nearby because having a sudden onset of chest pain or being unable to breathe can be scary and she is often on her own at home. But she says she has never got to the point where she doesn’t know what to do next

I've had a few occasions usually in the evening, that just seems to be at the end of the day - that seems to be when I have more problems. When I've had a very sudden onset of chest pain. That’s quite unusual for me, usually I do have a little bit of a warning, I feel a little bit uncomfortable and I know, normally I know that I need to take some extra medication and I actually don’t get to a state where I’ve got severe pain. But occasionally that happens and it is, I do find it very scary. I do spend quite a bit of time on my own because although I live with my husband, he’s away so much and that's just a fact of life. But it's never, I've never got to the point where I thought I don't know what to do next.

So far I've been lucky that I've not been so unwell that I couldn't get to my medication and I've always had it around me, my Ventolin, I always have it around me in the same room.

Anne was extremely anxious when she was first diagnosed with asthma, but didn’t think that the health professionals she had seen understood, until she was referred to see a consultant who realised how she was feeling and how it was affecting her.

When I eventually saw the consultant he recognised, I mean he was very kind and he listened to me talking not just about my breathing difficulties, but how I felt generally. And he recognised immediately that I was having a problem with anxiety, and, I think I resisted that diagnosis because I'd thought that it would be easier for someone to just say to me, “Ok these are the drugs you need to use and everything's going to be fine.” But I knew that if I was in a state of anxiety that was going to be more difficult to tackle. But in time I did accept that and once I accepted that and I knew I had to get help, but that help wasn't available to me through the NHS, I had to pay for that myself.

Ann used a couple of websites to look up information when she first had asthma, but was trying to strike a balance between getting information, and trying to stop herself from feeling anxious. ‘I thought, right I think this is enough for the time being.’

Did you go on the Internet straight away when you found you had asthma?

Yes. Yes I did.

And what did you look up?

I looked up, I looked up NHS Direct and I looked up some American websites. And I found that there wasn't, actually I found NHS Direct generally whatever I'm looking up on NHS Direct I find it pretty pathetic, to be honest.

What is it about it that doesn't appeal to you?

Oh. It's, I understand that it's there for everyone not just for me. But it doesn't give the depth of information that I personally am looking for and some of the American websites for patients are much more the sort of quality and depth of information that I'm looking for.

So what would you go on a search engine and type in asthma? Is that how you would look at it, or how would you go about it?

Yes, I would. I would but once I found Asthma UK, I found that, that I made a decision. I read what was available at that time, two years ago and I thought this is really helpful for me, this is what I need to know now. And I made a decision not to look from, well I looked at that website and as I say some of the American websites for patients and I thought, “Right I think this is enough for the time being.” And unless I have a, a particular question in my mind, I don't go looking for more.

And what is it about those websites that you favour, that appeals to you?

They, there is a problem that some of the language, so the vocabulary obviously is American, so that, that's something that's not so good. But they just seem to be more for someone who wants to ask more challenging questions and who’s not scared of reading research papers.

And do you read research papers, is that what you...

I did at the time.

You did. Yeah.

I did at the time but I couldn't find very much that I thought was relevant to me.

So you had to do quite a lot of selection of different aspects..

Yes, yes

..and things that spoke to you..

Yeah.

..that you could identify with.

Yes at that time. But ....actually I think that probably I didn't use the web that much.

Because you didn’t want to scare yourself too much?

Yes.

Yeah

Because I was still trying to strike that balance between trying to get on a, or improve my mental health, but work out what I could do to help myself physically. And emotionally.

So you were kind of managing the amount of information...

Yes.

...that you took in according to how you were feeling.

Yes that’s what I was trying to do.

Ann had to take time off work when she was first diagnosed. When she returned to work she found it difficult at first because some rooms in the building were hot and some very cold, which triggered her asthma.

But when I did eventually go back to work, it took me six months after my diagnosis to be well enough to go back to work. And then I was working very short hours and I gradually got myself up to the point where I was working about twenty-six hours a week. But I'd agreed with my GP that it would not be sensible to try and do more than that. So for about, about six months I was working that kind of pattern. And then I found out that, we all found out that we were losing our jobs. And at that point normal work really ceased, so I wasn't really in a normal work environment.

But during that time where you were working and it was... were you experiencing breathing problems a lot, at work,? How were you feeling during that time? Were you managing it through your inhaler?

I was managing it but even I had a couple of, of, it was a learning experience. So I had a couple of insistences where I was moving from a large open plan office that was generally quite stuffy and quite hot, most of the time, you know, summer and winter. And then I'd be moving into a much cooler meeting room for example. This happened to me a few times and I would get an asthma attack even though I'd been on my normal medication regime and it, it had to happen a few times before it finally clicked that it was the change in temperature that was causing the breathing problems.

And what would you do at work when you had an asthma attack?

I always had my Ventolin inhaler with me. So, once, once I realised that it was being in a cold place that was a problem, I would just go back to somewhere that was warmer and, and just rest. My team were very understanding and very sympathetic, well most of them were [laughs]. 

Ann uses the internet to find information and likes to see videos of people talking about their experiences ‘but I like to be able to click the stop button’.

I made a deliberate decision to stay away from forums and chat sites because I just felt for me with this tendency to have a over-active imagination that that just was not helpful.

So do you think, there are benefits in sharing experiences on the Internet or I suppose what I'm getting at is, is there, is there a format for sharing experiences that would be more acceptable to you in that sense? I mean would you rather just read about other people's experience rather than joining in and chatting and taking part in a conversation for example?

Yes. Yeah. I'm quite a reflective person that's my style really and I don't want to be put on the spot, I prefer to think... about what my opinions are, what my feelings are. I'm quite happy to talk about all those things, but I like to turn it all over in my mind. So, I like to have information in written form. I like to see short videos and I like to hear people talking about their own experiences. But I like to be able to click the stop button.

So, it's not so much the interactive experience that you’re interested in?

No, no. Not for me personally.

Yes.

I'm sure that it is very useful for some people but it's just not for me.

Ann experienced extreme anxiety when she was diagnosed with asthma, partly because she had seen her mother suffer badly with it. But she also knows that medication and treatments nowadays are much more effective than in the past.

I think it probably contributed to the anxiety, the very bad anxiety that I've experienced initially because I, on the one hand I know that medication for controlling asthma has improved hugely over even the last ten years because my mother's experience has improved over that time and she talked to me about that. While on the other hand I know how it's affected her life and how it's limited her. So I guess whether I was concisely aware of it or not there was part of me that was saying, ”Oh no, I really thought that it wasn't going to affect me that I was one in the family who had missed this illness, but actually no.”

Did you know that you could get it later in life?

No, I had no idea.