Andreane

Age at interview: 48

Age at diagnosis: 33

Brief Outline: Andreane, age 48, was diagnosed with asthma at age 33. She is white European, married and works as a personal assistant in a public sector organisation. Andreane was diagnosed with late onset asthma after visiting the GP about a persistent cough and chest infection that was difficult to clear. She has what is known as occupational asthma, due to environmental conditions at her workplace at the time she was diagnosed.

More about me...

Andreane was diagnosed with asthma when she was in her mid- 30’s. She was experiencing a cold and chest infection that wouldn’t go away and when she visited the doctor was diagnosed with asthma. At that time she was given medication in the form of inhalers but not monitored by the GP or told how to use the inhalers correctly. She struggled to keep her asthma controlled for the next three years, until she was referred to see an asthma nurse who gave her the right information and support to help her to understand how to use the medication correctly. She was also given an asthma action plan at that time, which helps her to know what to do when her asthma worsens. She now knows that if her peak flow reading reaches a certain point she needs to get emergency help as soon as possible. There have been a few occasions where she has needed to go to hospital for help, although she has only had one incident where she has had to be admitted for her condition to be stabilised.

Andreane explained that it has taken her some years to be able to understand and recognise what her triggers are. Chemical smells like strong perfume and cleaning fluids, being near somebody smoking, cold weather, and going down with a chest infection are all triggers for Andreane.

Andreane hadn’t realised when she was first diagnosed with asthma how important it is to be vigilant about taking the preventer inhaler regularly as prescribed, but now understands that you must keep taking the preventative medication even during times when you feel well. Now Andreane does voluntary work with Asthma UK to help support other people who have asthma, and gives talks to groups and schools about how to cope with asthma as although it can be controlled and stabilised in many cases, she feels it’s important for it to be remembered that it can also be life threatening. Andreane’s experiences of doctors and health professionals in relation to her asthma have been mixed. She feels that GP’s don’t always know enough about the condition, and that sometimes they can tend to be dismissive and not listen to patients. She emphasises how important it is for people who are newly diagnosed, or struggling with asthma to try to get as much information about the condition as they can so that they can become experts on their own condition.

Andreane sometimes takes a short course of prednisolone tablets when she has a chest infection. She finds they affect her appetite, but she says ‘it’s the lesser of two evils...’

Have you ever had to take a course of steroid tablets at all?

Yes. I’ve noticed now that I tend to need to do that, even when I’m prescribed antibiotics I need to take prednisolone and I’m prescribed six tablets every morning with breakfast of 5mgs. So 30mgs of prednisolone for a period of at least a week along with antibiotics. Because antibiotics are normally for the sore throat I get and the chest infection, it’s the prednisolone, I need on top of the preventer which is an added dimension of strength and control than I need with the asthma.

Okay. And are they, do you notice the difference? Are they effective? How do they work for you?

I’ve noticed the difference that within a few days I notice a difference in the less coughing or more control. However else I notice an increased appetite factor which is really, really a difficulty. As you can tell I’m not exactly a slim person in the first place, and that’s very hard to control, not wanting to eat more, and that’s something that I find very hard. But, it’s the lesser of the two evils. It’s better to have the prednisolone to have greater control when it’s got to the stage of a chest infection than not to have it.

Andreane explains that not everyone experiences asthma in the same way so it’s important for health professionals to treat each person’s asthma individually.

Some of my attacks I don’t get breathless, I just have difficulty breathing out. How can I put it? Because some people you can [imitates someone gasping with an asthma attack] but sometimes I don’t get that, I just have a very, very, tight, tight chest. And that’s all the symptom I can get. So I’m not always, for the medical profession they have a sort of a check list, if you do this, if you do this, you do that, you do that, but not everyone meets that check list criteria every time. So I try to say to people, to the medical profession, don’t categorise a person with asthma, having standard symptoms, because each individual is separate. And their symptoms can be one or two of the same things or can be totally different.

Andreane was referred to hospital after a serious asthma attack where she saw an asthma nurse who helped her to understand the best way to keep symptoms under control. ‘I didn’t fully understand what controlling asthma was.

I actually had an attack, I had, because of getting severe coughing, I started to have chest pains and of course they couldn’t rule out the possibility it was a heart problem and I actually saw and got treated by a very well known surgeon in the general hospital local to where to where I live. He said, “You haven’t got a heart problem. Your problem is asthmatic.” He made a referral to this clinic, this respiratory clinic in [locality] and that’s how I got to see Dr [name], who was an actual asthma expert and also saw the nurse, who was an asthma clinic nurse. And it’s through that referral I got the proper treatment that I should have had when I first started.

And what was that three years like before that?

I was doing what I could, but I have to be honest I wasn’t taking it seriously. I wasn’t taking my medication as regularly, because I thought well I don’t need, I’ll just take it when I need to, and that’s, foolishly, I was very lucky that nothing more serious happened, but yes, I wasn’t taking it… I was taking it when I thought I needed to, not regularly respecting it, and treating as seriously.

So would you have been less likely then to have taken the preventer and…?

Yes, yes.

Okay. And did you feel like, did you feel in control of your asthma before you saw the…?

No. I didn’t fully understand what controlling asthma was. I didn’t fully appreciate the seriousness and it was only through a) meeting the nurse, b) becoming a volunteer for Asthma UK that I fully understood how serious it could be, and it brought home to me how lucky I guessed I was that I didn’t actually have something really bad during those three years, when I wasn’t taking it seriously. And wasn’t actually respecting that I needed to take the medication even when I didn’t think I needed to.

Andreane explains how she uses the medication, and how the peak flow measurement helps her to know when to make adjustments. She feels ‘I’m now beginning to know my body.’

Okay can you tell me what an Asthma Care Plan is? What kind of things…?

Right its monitoring how your breathing is. And you have a peak flow which is a sort of a cardboard tube and you have a little sort of nozzle attached to it, and you have to take a deep breath, and then blow out, and it’s the blow out that is measuring the peak flow.

Okay.

And in the basis of my good peak flow is 550. If I’m doing a blow out and it goes to 550, because there is a little red shutter on the actual cardboard trigger moves as you blow out.

Okay.

And as you blow out it moves along certain dotted lines and it’s in, I think it’s in hundreds. So mine is 550 is the best one, so I know if I’m doing that, I’ve got no problems. I’m breathing fine, everything’s okay. And then, with the care plan, I now know that if I go to 330 I blow out, normally it’s the best of three blows. If I go to 330, take it seriously, call the paramedic or an ambulance to take me to hospital, because I’m not breathing out properly enough, there’s something stopping, and that also, I have an indicator when I take my Salbutamol spray, like Ventolin or Salbutamol, if I take ten or eleven or twelve, up to about fifteen puffs, within a space of an hour, then I know that combined with the peak flow, serious. Don’t hesitate. Call a paramedic.

And do you keep this, do you have to do it regularly? Is it like every day? Every...?

Ideally you should do it at least once a week.

Once a week.

But I now can recognise my own signs without having to do the peak flow on a regular basis.

Okay.

And on that basis as I said, I take my preventer, which is a Acuhaler, 500 mg Acuhaler. I take that every day irrespective so, and I know that my trigger time or my worst time is between September and March. So I know I can actually take extra. I’m normally two puffs a day, twice in the morning, twice in the evening. But if it gets worse, I take four puffs in the morning, four puffs in the evening of the preventer to actually make harder, stronger control because I know then, I’m learning my worst time, have the triggers cold and damp I’m just being more extra careful.

If I have any doubt, I will take a peak flow, but it’s now becoming, it’s a good, that’s nearly, yes, fourteen years now. So it’s a good fourteen years I’m starting to learn and be able to, you know, I don’t know everything, I would be the last person to say that, but I’m now beginning to know my body, and know myself and on that basis and how on a good day, how things are, and how on a bad day what I need to do to prevent it.

So yes, so yes, when you’re in early stages of it, yes, its recommended to do the peak flow at least once a week, and to monitor it and to monitor when it’s low, when it’s low, what are the factors that are affecting you, so that you get to know you get a picture and then through that you can develop it, and grow and then through that you can sort of learn yourself what’s a good one, and what’s a bad thing for you. What to stay away from. What you can do.

Andreane made a personal asthma plan with a specialist asthma nurse. She works out when it’s time to ask for help by monitoring her peak flow and how often she is taking her reliever inhaler.

And she also did an asthma plan for me to make sure that I understood what my peak flow was. What a peak flow is to actually breathe, you take a, you breathe out and how well you breathe out is your maximum, and my maximum is 550. If I go down to 330 it’s serious, call an ambulance, don’t hesitate, hospital straight away.

So that’s helped me to understand. So if ever I start to get a bit chesty cold, and it starts to get really chesty and not to go straight, then I take my peak flow and if it’s very low, then I have no hesitation, I know exactly what to do, and I can deal with it.

And it’s through that I’ve been able to manage it. You get the odd occasion, like even when you’re taking all your medication properly, unfortunately you still get ill. And my worst case scenario was five days in hospital and I, because I had a really bad asthma attack and that was hard, because I was obviously married with my husband and it was five days away from him which was, I hated, but it was necessary.

Andreane thinks people need to understand how serious asthma can be so that they can manage it properly. Doctors need to explain things, but without making it sound too scary.

I think sometimes we’re too shy of advertising the negative side of things.

Okay.

Because we don’t want to upset people. And therefore we are too willing to mollycoddle to put people into cotton wool areas, and much as I don’t want to upset anyone and to scare them, I don’t want to not shy away from the seriousness of it, because until you understand and appreciate the seriousness will you take it seriously, and actually respect it? And that’s my worry, that’s my concern. No I don’t want to be a fear monger and put the fear, not unnecessarily but you have to have a happy medium of healthy respect of the illness you have. How to deal with it and what you need to do and to take it seriously. Because ultimately in this case it can be fatal.

And were you made aware of that when you were diagnosed with…?

No. No. It was, oh you’ve got asthma, every day thing, nothing to worry about, just another …., just another illness and nothing to worry about. Yes. Not fully appreciating how serious it could have been. I’m just very grateful in that time I didn’t time fully take my medications so seriously that I didn’t have what could have been cast as a serious attack, so much so I could have died from, I’m just very lucky that I didn’t.

Andreane felt the doctor didn’t spend enough time explaining things to her, but the asthma nurse had more time to spend giving her information which helped her to better understand how to manage her asthma.

The main doctor was the senior partner of the group and he was the one who recognised the crackling in the chest and said, “Right you’ve got asthma.” And then said, “Right I can’t prescribe the medication but next time you see…” Or he prescribed it. That’s right, he prescribed the preventer and the Salbutamol or Ventolin just to, inhaler to help. And the next time I saw the GP, because I asked for an explanation and she said, “Oh because you have to.” And she didn’t go into details and I’m the sort of person, I like to understand why I’m taking something. Not just because I have to. I need to understand the reason for it. So it helps me to appreciate the seriousness. And as I said, only through being referred thankfully to an asthma clinic nurse of a different health centre but in the same, in the [local] area, but just a different catchment area, that she actually took forty minutes, she actually took the time to go through to say, “Right the blue one is to help you breathe out as and when you get a slightly tight chest, because of the cold weather or whatever, the brown one, or the orange, or whatever the preventer is to actually control and maintain control, so even when you feel okay on a good day you still need to take it, because it’s like floodwater, the barrier rising, it’s the barrier to maintain it, to keep it, so whilst you’re not feeling troubled by it, it doesn’t mean to say it won’t get worse. So with the preventer it helps to keep it under a level that’s controllable, and obviously she also did the asthma, asthma plan which was extremely helpful. And understanding that you know there is a, with your 550, 500 which is the peak flow that I have. That’s fine, it’s nothing to worry about, it’s really good, but if it goes down to 300, 330 then you know that’s serious and it’s not, no, do not hesitate, you call the paramedic or you take yourself to A & E because, if you can do, if you’re not too breathless because then it’s a serious level and its dropped too low for you to be able to manage properly.

Andreane appreciates being taken seriously by paramedics if she has to call for help, but has also had some interactions with health professionals that have left her feeling let down.

The local paramedic service know me very well, and they say, “Oh yes, we know you, don’t worry.” The worrying factor is in the frustration, of course you know how fate, you know, unfortunately it can be fatal and you have, I have a tendency to panic, which I try to tell myself, there’s no need to panic, you know what you’re doing, you know where you are, you’re safe. But however much you actually tell yourself that. Sometimes you can’t stop yourself from panicking. Which is not good either, because it increases the symptoms, and makes you think you’re getting worse, when you’re not necessarily getting worse.

But thank goodness for the paramedic service in the local East area where I live. They’ve very understanding. Very, very respectful and they still treat me, you know, strict carry on treating me, even though they suspect it could be just a panic attack. They’ll still take me seriously, and that, that means a lot to me, because, you know, to look at me, I don’t have a broken arm, I don’t have something visible to, to say that I’m ill, but they know the symptoms, so now I think I believe they’ve been trained to recognise it more quickly. And to appreciate and also it’s the respect factor. But, you know, I’m saying I’m not well, and don’t be silly woman, you’ve heard people say that to other people and you think, just because they don’t look it, doesn’t mean to say they’re not ill, and that’s, I think is very valuable to have that respect factor involved, and to have people taking you seriously and actually listening to you rather than saying, we know better, we’re medical professionals. Which has happened in the past I’m afraid. I have actually been in hospital where a nurse has blatantly made a throw away comment, “Oh, you have to get rid of your cat.” Not wanting to find out first, how I came about with asthma, no, I had the cat before I had the asthma. And therefore she wasn’t the trigger at all. And that really hurt.

Yes.

And its, I mean I know that some people a job is a job rather than a vocation and you can tell those straight away, because the comments they make, throw away comments are very hurtful and not considerate of the person they are thinking about, not really thinking about the person themselves, they’re thinking of well that’s a, like they’re just silly, and they just don’t respect the person for who they are or get to know the background or the lifestyle, because each of us have different lifestyles and it could be that, as she said about the cat, she didn’t find out, take the time to find out, but I had a cat before I had the asthma. So saying a throw away comment like you must get rid of the cat, was just, well very sad really.

Andreane was open about having asthma at her job interview and explained to her employer that she sometimes needed time off. He was very understanding.

Have you ever had to take any time off work because of asthma?

Yes, when I’ve had a chest infection, unfortunately, with the result of antibiotics it does make you retch a lot, actually it is not actually very pleasant to do in an office, in an open plan office. And it can happen at any time, and also it totally washes you out as well, so …. I was honest with my boss, I said to him from the very start, “I don’t go ill, but when I do go ill, it’s normally about two weeks at a time, because I suffer from asthma, and if I come down with a cold, it never stays a cold, becomes a chest infection.” And thankfully he appreciated the illness, he said, “That’s fine. Quite understand I appreciate that. I’ll take your word.” So…

And was that during your interview?

That was during the interview.

Okay and did you feel it was important to…?

Yes, because I think at the end of the day, I don’t want to be misleading people at the end of day it’s going to be a factor, I can’t shy away from it. I will get ill. Its, however, regularly and well I’m taking my medication, I can’t shy away from people having colds, passing the cold to me and I goes straight to the chest. So it’s a known fact that I’m going to be ill at least once a year for at least two weeks.

And I suppose when the weather changes that’s when you…?

Exactly. That’s when you notice it more as well.

And do you find you have to avoid being, if someone’s got a cold or do you avoid being near them or is it not…

You can’t really … Where I work like all last week and yesterday and Monday I was having people sneezing around me and with sore throats. I though oh boy...

Here we go.

I just took extra Vitamin C and try to do as best as I can and I thought if it’s going to happen, it’s going to happen and I’ll just have to deal with as best as I can. Thankfully, it doesn’t seem to have happened.

Andreane’s colleagues helped out when she had an asthma attack at work. ‘Any form of kindness from a colleague or friend or family member. Just knowing they care and want to help you, helps a lot’.

I don’t always know how or when it’s going to happen. Like recently I, I had a mini attack when something went down the wrong way. I was eating something and it went down the wrong hole in the throat. And it just, just something like that you don’t expect, but it had a bad effect on it, because obviously I started choking and through the choking I started coughing and it was a mini attack and I couldn’t stop coughing, I couldn’t stop, and I started to retch which is a sign of having an asthma attack.

And my colleagues were very thoughtful and generous and said, “Do you want some water…” Well you know… I couldn’t talk because as you cough you start to lose your voice. So then its, you know, and it was just the fact that people cared enough, and took the time to, that also helped as well to calm me down, because of course it’s a vicious circle. You start panicking [laughs]. Which doesn’t help either. So it’s, having people show that they care [exhales] helps you to calm down a bit. Not totally straight away, but just helps to slow down the process and as you relax and as you start to calm down then it seems to stop. It helps to, because it’s like a trigger mechanism. It’s a vicious circle. The more you panic, the more you can persistently create the coughing mechanism because of the lack of chest, I can’t explain it, but it just persists. It persists. It makes it carry on. So any form of kindness from a colleague or a friend or a family member just know, show that they care, and, you know, they want to help you, helps a lot as well.

Andreane had her first asthma attack after working on old files with mould growing on them.

I can actually not – am not affected by what is a standard, its more chemicals, because mine is more occupational health. I put it down to the fact, I was working for a local authority in East London and they wanted me to triage and sort out a huge amount of children’s files, which are children that had been adopted or whatever, fostered. And these under the Children’s Act had to be stored for at least 75 years, and these were stored in the worst place possible, dark, dank places. And there was actually orange mould growing on the files. And I asked for protection. I thought you know, and, but nothing was given until the end of the two month period, and I think by then the damage was done. And I mean I did a good job, I did everything. But that was the year in December 1997 when I had this persistent cough and the work I did was during sort of like February to whatever, September. So it was not sort of straight afterwards. But then I got the cold and then it was persistent cough and at the time I just had to sort it out and that was when I was diagnosed.

And people said, “Oh well why didn’t you sort of go back and sort of take out a case?” And I said, “Well at the time I was just too shocked, I wasn’t expecting to have that.” And by the time I did think about possibly taking the local authority to case because they didn’t actually provide me protection it was too much of a hassle. And I may still be able to do it, but life’s too short to have to worry about these things. But at the end of the day I wouldn’t want anyone else to be suffering in that respect because it just doesn’t seem fair. You know, you have a job to do, naturally you want to do it to the best of your ability but you need to be able to be protected also, to enable you to do it to the best of your ability.

And that was the frustration. So I have what is called occupational health asthma, because I’m not affected by the standard triggers, like dust or fur. I’m more affected by chemicals.

Andreane feels it’s unfair she has to pay for asthma medication when people with some other conditions get free prescriptions.

I have a pre paid prescription. I know I pay a certain amount a year and therefore whenever I fill out my form I don’t have to pay there and then because it’s already covered and it’s deducted from the amount I’ve prepaid and I’m grateful for that because I’m prescribed at least two sets of salbutamol, two sets of seretide. I also take tablets montelukast, and also Phenexa, phenexadrine. So you’re looking at about thirty quid a month at least.

So pre paid wise, it pays for itself.

And you don’t think it should be, you think it should be on the NHS?

I think it should be recognised like cancer or diabetes or long term illnesss, and are free for, free for the patients, why shouldn’t we be treated equally in that sense? No other reason, no special treatment, just respect for the equally like cancer or diabetes. It’s a long, I now know I’ve got asthma for the rest of my life. So why should I have to pay for all my medication when no disrespect to someone whose got cancer or diabetes, they don’t have to.

Andreane feels it’s important for doctors to get a full picture of a person’s life ‘take the time to listen and give them the time to open up, and establish a rapport, it helps…’.

I think it’s, they have a lot of training, a lot of training, which is fantastic. But they haven’t been given the practical side of how to deal with a person, individual to respect them. And sometimes to encourage them to open up, because in encouraging an individual to open up they can actually share with them and give them much more of a greater, a wholer picture of what their lifestyle is, and therefore there might be other factors involved that they don’t know about. That could have a great impact on their illness, and yet, if the health care professional is just short sharp, right this is what you’ve got, this is what you’re going to have, bye, bye thank you very much. What’s the point? You know, you need the fuller picture of the person, because it could be something else in their life that they are doing or not doing that could have a knock on effect and an impact to, on their illness, but if you take the time to listen and give them the time to open up and respect, you know, establish a rapport it helps.