Peter

Age at interview: 62

Age at diagnosis: 45

Brief Outline:

Peter, age 62, was diagnosed with asthma at age 45. He is white British and married with two adult children. He is a retired IT professional. Peter’s symptoms vary in severity, sometimes mild, and at other times quite debilitating. For around nine months of the year Peter says he feels fine and can do more or less what he wants to do, but there are times when the asthma is more severe and his life becomes more restricted

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Peter was diagnosed with asthma when he was 45. At the time he had a chest infection for which he was prescribed antibiotics, but the infection didn’t seem to go away. After trying several types of antibiotics which didn’t seem to work his doctor said he thought it could be asthma. He was given a reliever inhaler which seemed to help and over the next four or five years the asthma didn’t affect him too much, however more recently it has gradually deteriorated.

Now, Peter’s symptoms vary in severity, sometimes mild, and at other times quite debilitating. For around nine months of the year Peter says he feels fine and can do more or less what he wants to do, but there are times when the asthma is more severe and his life becomes more restricted. Symptoms typically involve tightness in the chest, coughing, wheezing and shortness of breath He finds that the shortness of breath and coughing trouble him most because they prevent him from carrying on a normal life and also when he is unwell his sleep is disrupted because of the coughing. Lack of sleep can exacerbate things because it can be stressful, which in its turn can worsen the asthmatic symptoms. Peter’s main trigger is when he gets a cold or chest infection and at these times he needs to increase the dosage of his medication in order to manage and control the asthma. For the past couple of years Peter has gained the confidence to self- manage his condition which he finds helpful because it eliminates the need for frequent visits to the GP and he feels more in control of his own life. For much of the time Peter is able to continue the active lifestyle he enjoys and is still able to participate in activities such as hill walking and skiing, but there are times when he needs to take things more easy.

Peter’s medication has been reviewed and modified regularly since he was first diagnosed. He currently uses a combined preventative inhaler called Symbicort which he takes four puffs of morning and evening. In the evenings he also uses Singilair which works to help reduce inflammation of airways. In the mornings he also takes Nasonex which treats rhinitis, which is another condition that people with asthma often suffer from. Peter records his peak flow measure on a daily basis, so that when he isn’t feeling well he can tell whether he needs to adjust the dosage of his medications. More recently he has gained the confidence to self manage his asthma without always having to consult the GP. He does this by following the care plan his GP has given him and he knows that if the peak flow measurement goes below a certain point he can begin to take oral steroids (prednisolone) in addition to his inhalers. Usually when this happens the prednisolone stabilises his condition over a couple of weeks. He also takes medication which increases the calcium uptake in the bones (alendronic acid tablets) to help prevent him from developing osteoporosis as this could potentially be a problem in the future as a possible side effect from long-term use of high dosages of cortico-steroids.

Peter has also learned how to differentiate between the symptoms of a chest infection and asthma, because they can be similar, by examining the colour of the phlegm that he coughs up, so that he knows whether to begin taking antibiotics, or whether he needs to step up his asthma medication. This makes life easier and more convenient for Peter and he also feels it’s more effective because he doesn’t have to wait until he can see the doctor and can start taking the medication straight away. Managing his own condition gives Peter a sense of control over his asthma, but he says it can take a while to learn to understand your own body in order to know how to manage things effectively. Before he was diagnosed Peter knew very little about asthma and was surprised to find out that it can be life threatening.

Peter explains how his asthma has changed over time, and how it affects his life.

It’s quite perplexing when you are first diagnosed because you don’t really know what it means and how it’s going to affect you. I have to say in the first several years, three or four years of having asthma it didn’t affect me too badly. I just used a reliever inhaler. And not all that often but over the years it has deteriorated. Such that I’ve probably used 12 or 15 different medications over the years. I’m now using a fair old cocktail three every day and two others as a result of having asthma, one of them to treat a potential side effect rather than actually to treat the asthma.

The symptoms I have I think are the same as what other people have. And they vary in severity from being very mild to being quite debilitating and that seems to be a bit of a characteristic of the condition called asthma. It not only affects different people in different ways, and to different degrees but any one individual can be affected in a different way over the course of a year let’s say.

So I reckon typically I probably have nine months of the year when I’m pretty fine. I can do most of what I want to do. And I probably have two or three months of the year when I’m restricted to a greater or lesser extent. Sometimes quite badly restricted. So it is variable.

The symptoms are yes, tightness in the chest coughing, wheezing. I think probably the, oh and shortness of breath. The shortness of breath and the coughing are the things that trouble me most. It may be mild and I might not notice it until I’m sort of walking up a steep hill for a few minutes or it may affect me just going up a few stairs. and I may not be able to hold a normal conversation because I haven’t got enough breath to keep it going.

If there’s a bad cough alongside that as well then you can’t sleep. As soon as you lie down it starts you off coughing so you have to sit up. And if you’re doing that for several days on end or a couple of weeks, or three weeks, coughing and coughing and coughing and coughing then you pull all your muscles in your upper body and so it hurts like mad whenever you do cough. And you really can’t sleep partly because you’re coughing, partly because you can’t get comfortable anywhere.

And that’s when I’m at my worse because you’re run down anyway with not being able to sleep and so on and so forth and you’re run short of breath quickly and so on. For a while it really is quite debilitating. And I go from there at worse to sort of where I am now where I can probably do as much as any 62 year old can.

When he was first diagnosed as an adult Peter didn’t know what to expect or how it might affect his life. Some people are much worse affected than he is.

Like many people I thought it was something which affected children and that you might then grow out of. Fortunately some children do, but I understand that’s very rare with late onset asthma.

To be honest I didn’t know what to expect. I certainly had no idea that it could be as severe as it is for some people. I mean I have it kind of moderately badly, but there are plenty of people who have it, you know, very, very much worse than what I do, and the symptoms are much worse. I’ve never been admitted to hospital. Quite a lot of people I meet have been. Some are admitted fairly regularly. And I’d no idea it could be fatal. Its relatively sort of low numbers of people a year, around 1100 or that kind of number anyway, so compared to some of the conditions it’s not that high, but I’d no idea at all that it could be the primary cause of death for well infants, children, teenagers and people of any age. So I’d no idea how widespread it was or how serious it could be. So that just something that you learn as you go on.

Peter was initially treated for a chest infection but after taking antibiotics which didn’t clear things up doctors realised he had probably developed asthma too.

I was diagnosed with asthma when I was 45. I am now 62 so that’s a little while ago. It’s called late onset asthma so not as child. The circumstances were I think not uncommon. I developed a nasty cough and cold which didn’t go away and didn’t go away and didn’t go away and eventually I went to the doctor and he said, “Ah I think you’ve got a chest infection and gave me some antibiotics, which weren’t effective.

I went back two weeks later. A different antibiotic and that didn’t work either. And he said, finally he’d getting some analysis of the stuff I was coughing up. When the result of that came back then there was a very specific condition diagnosed as being called pseudonumo something or other and a very specific antibiotic was then prescribed and, and that did improve matters a lot, but I still wasn’t completely so I went back to the doctor and he said, “You know, I think you might have asthma.” And that’s how it turned out.

I mean the first time I went to the doctor with this chest complaint, I’d had it perhaps for two months before I went because we all get these things from time to time, and you think it’ll clear up. It didn’t and I was, you know, getting run down and you know, feeling quite, quite ill. So I went to see him and it then probably took another couple of months to go through the whole process of no that didn’t work, no that didn’t work, ah now we’ve cured the infection but I’m still not quite right, ah you think you’ve got asthma. Yes that was probably about a 4 month time period. Something like that.

Peter takes Singulair every evening in addition to using his preventer inhaler twice a day.

The treatments that I now use although over the years I’ve used different things, but I now use something called Nasonex which is intended to treat rhinitis which is something which often goes along with asthma. It’s a different condition. But I have that as well. So I use that just in the morning. And then I use something called a - well a brown inhaler if I’m allowed to use it is Symbicort, which is a combined preventer reliever. I use fairly high doses of that morning and evening. Four inhalations morning and four evening. The strength of that is 200/6. And then in the evening I use something called Singulair I think they’re sort of the drug on the leaflet is something called montelukast and its intended to help reduce the inflammation of the airways. So those are the things I used regularly. 

Peter is symptom free for about 9 months of the year, but there are times when his asthma is less well controlled and he finds over a period of time he can begin to feel worried about his breathing.

The symptoms I have I think are the same as what other people have. And they vary in severity from being very mild to being quite debilitating and that seems to be a bit of a characteristic of the condition called asthma. It not only affects different people in different ways, and to different degrees but any one individual can be affected in a different way over the course of a year let’s say.

So I reckon typically I probably have nine months of the year when I’m pretty fine. I can do most of what I want to do. And I probably have two or three months of the year when I’m restricted to a greater or lesser extent. Sometimes quite badly restricted. So it is variable.

The symptoms are yes, tightness in the chest coughing, wheezing. I think probably the, oh and shortness of breath. The shortness of breath and the coughing are the things that trouble me most. It may be mild and I might not notice it until I’m sort of walking up a steep hill for a few minutes or it may affect me just going up a few stairs. And I may not be able to hold a normal conversation because I haven’t got enough breath to keep it going.

If there’s a bad cough alongside that as well then you can’t sleep. As soon as you lie down it starts you off coughing so you have to sit up. And if you’re doing that for several days on end or a couple of weeks, or three weeks, coughing and coughing and coughing and coughing then you pull all your muscles in your upper body and so it hurts like mad whenever you do cough. And you really can’t sleep partly because you’re coughing, partly because you can’t get comfortable anywhere.

People talk about asthma attack which sounds like something sudden and violent. Well I haven’t had that experience. I can detect that the asthma is getting worse but it’ll be, it’ll deteriorate over two or three or four day period before I might reach a point where I’m struggling to breath. And, I wouldn’t describe that as an attack, it’s a steady deterioration. Although I have had the sensation of being afraid that I can’t carry on breathing. Which is frightening. It sounds absurd but I can remember sort of sitting on the bed and concentrating on breathing and thinking, telling myself all you’ve got to do is carry on you know, steadily slowly, breathing in and out. It sounds ridiculous to suggest, to suggest that you don’t know how to do that, but you know, and it’s obviously quite frightening when, when that happens. But I’ve only had that happen once, to the point where I really quite frightened.

Usually Peter’s asthma is successfully controlled and there is little impact on his life, but during the course of a year he may get a few weeks when it flares up.

Overall to what extent would you say asthma interferes with your life?

Yes, well a lot of the time it doesn’t. It’s successfully controlled by medication. For at least a few weeks of the year it has a, it has a definite impact on me, yes.

And at those times do you just… you know, can you not go out and walk or … what sort of things are you prevented from doing?

It would stop my exercise, you know, walking, swimming, biking, all of which I do some of. And it will stop me enjoying life, you know, you’re ill. To the point where well you really can’t do much can you. You run out of breath, you can’t even maintain a conversation. Now fortunately for me that doesn’t happen more than two or three weeks a year other than at one ten week period when I was really quite poorly last a little while ago. But yes, so at those times it does have an effect on you.

Peter explains how he now has the confidence to self- manage his asthma, and uses a peak flow meter every day to keep a check on things.

I do now self manage the condition. I’ve only been doing that about two and a half years, but I find that helpful. Partly because I don’t need to go to the doctor, because I’m confident enough to manage it myself. If I think I need help then obviously I go back. And I do occasionally. But generally I’ve found it a positive thing to do. As I say partly because I don’t need to go to the doctor, partly because you feel as though you’re more in control of your own life which is good.

And actually, since I’ve been doing that, I’ve probably had a somewhat better quality of life. It’s not sort of a set change but I think it’s been positive in terms of my own health outcomes.

I measure my peak flow, that’s the volume that you’re able to inhale and exhale. I measure that usually three times a day and keep records of it, I usually know if I’m not feeling well I can tell that my asthma is deteriorating or it’s bad, obviously because you’ve got the symptoms, but that’s an objective measure of the point I ought to be steeping in with more treatment.

And I think it’s possibly of some help to the medics if I have to go back to them I can give them a record of what’s been happening recently. Also long term I can track what’s happening to my peak flow and long term unfortunately its deteriorating but to some extent you would expect that. It’s a normal ageing process, at least to some extent.

Yes, so I measure my peak flow and use stronger medication, oral steroids. The brand name, I think it’s the brand name is prednisolone. It’s widely used to treat this, this condition and other things too.

And if my peak flow shows that I’m sort of 20% below what I ought to be, or below my sort of personal best in terms of peak flow output then I start using prednisolone. At the moment I use six tablets a day 5mgs so 30mgs a day in total. There’s some debate as to whether or not that really ought to be stepped up to eight. But the jury’s out on that. And I’ve got to say that usually is effective after one to two weeks of that sort of treatment then I do usually start to respond and my breathing and other symptoms, my breathing improves and other symptoms start to decline.

I have learnt usually successfully, how to differentiate between as exacerbation of asthma and a chest infection. If I have a chest infection I need to use antibiotics as well. The symptoms are actually quite similar but the stuff you cough up, the mucus you cough up is a different colour. It’s usually a creamy colour if its asthma and a sort of darker greener colour if you have got a chest infection. So if there’s darkish, greenish stuff coming up then I use the antibiotic. It’s a broad spectrum antibiotic called Amoxycillin. Part of the penicillin group I imagine. And that usually does the trick.

Peter has trained as a volunteer speaker for Asthma UK. He likes learning more about asthma and helping others, but he has also been helped by meeting others with asthma and hearing their experiences.

Probably about four or five years ago, hm, yes, five, six years ago, I started to get a bit more active with Asthma UK I trained as a volunteer speaker so I go about talking to anybody who’ll listen, telling them specifically about asthma and trying to spread the word about it.

What prompted you to do that? What prompted you to get more involved in that way?

Enlightened self interest I suppose. I thought it was a way for me to learn more about it. To meet other people with the condition which would be helpful to me which it is and trying to do a little bit to help other people. That, that’s fine as well.

What do you think there’s benefits in sharing experiences?

Yes, I do I mean I think of myself as a fairly robust sort of person and I can be self reliant and so on and so forth, but I joined, when it first started, something which Asthma UK started four or so years ago called a Users and Carers Advisory Forum bringing people together from all over the country with different degrees of asthma. And feeding back to Asthma UK on Asthma UK’s proposals and formation of policies and strategies and so on, feeding back on the variety and wide variation in types and quality of treatment around the UK. And try to generally help formulate Asthma UK’s policy. So that little group became inevitably because people have that one thing in common, becomes a support group and I did find it cheering to know that you’re not on your own and as always you meet people a jolly sight worse off than what you are and oddly that makes you feel better or you’re thankful you’re not as bad as they are.

Peter says it’s important to work hand in hand with the GP to find the right treatment; ‘be prepared to experiment a bit’.

I think if you’ve just been diagnosed you’ve got quite a lot to learn. I mean because its severity varies so much. I mean a lot of people are successfully treated with occasional use of a reliever inhaler. There are lots of very successful sporting people that what’s her name Paula Radcliffe, and I think even Mr Beckham and various other, you know, very successful sports people have asthma, but it must be all right, must be mild, must be well controlled by medication, which is great. And if that’s how it affects you and that’s all you need to do, well you know, that’s fine.

But if it goes on to be… to become more severe then there’s actually quite a lot to learn. I don’t think anybody has a monopoly of wisdom for any given patient as to what they should do. So you’ve got to be prepared to experiment a bit. I think if your GP can’t tell you, and I’ve always felt fortunate that my GP would say, “Well, you know, I’m not sure what the best thing to do is, these are the options. You know, what’s your feelings?” And we’d alight on something or other and see if it was successful and if it wasn’t you know, try something else. And I always thought that was good. But I mean taking into, to get your own views taken into account. So question what you’re told and be prepared to try out different things.

I think learning to self manage is useful. I think that is useful. But that might take a bit of time to get to the point where you feel confident enough to do it. 

Peter says it’s important for health professionals to have a good understanding of asthma, and to take it seriously.

It sounds like you’ve had quite a good experience?

Yes. I think overall I have. Many people I’ve met don’t. The, post code lottery does seem to exist. I wasn’t sure I quite believed it but I do now. I think there are more generic things that I want to say are not necessarily applying to asthma, but my impression is that not everybody listens terribly well. I always felt I was very lucky in having a genuine consultation. It’s the kind of desk side manner of the person you’re talking to. But I always felt that was positive to be having a genuine consultation rather than being told to take these and go away. And that doesn’t seem to happen necessarily all that widely.

I think even, this is my impression, although it’s not my direct experience that, that probably quite a lot of health care professionals don’t actually take the condition as seriously as it should be taken partly because the majority of people- all they need is reliever inhaler and they’re fine for a long, long time. In a way that’s difficult to believe because they ought to know that it can be serious and you’d have thought if they were seeing a couple of thousand people over the course of a year or whatever it is then, some of those people have fairly severe asthma but …

Do you think that reflects, I mean generally in society do you think not enough is known about asthma?

No. I don’t think people do know that a) its widespread and b) it can be a serious condition. Again this is not my experience because I haven’t had it, but talking to other people who’ve you know, been admitted to A & E you know, it would appear that people in A & E don’t necessarily know too much about asthma and might be very good at fixing other sort of emergency situations, but the aftercare from severe asthma attack also seems to be very, very inconsistent. You know, from nothing to quite a process.