Jane Z

Brief Outline: Jane, age 60, was diagnosed with asthma age 1 year old. She is white British, single and lives alone. She worked as a civil servant for many years but retired on medical grounds at age 50. She has recently started working as a part time administrator. Over the years Jane’s life and opportunities have been restricted at times by her condition, although she is now much more able to manage the condition and has had periods where things have been relatively stable. Jane has what is known as catamenial asthma, which is related to the female hormones around the menstrual cycle, and also allergic asthma related primarily to dust.

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Jane has had asthma for as long as she can remember and thinks she was about age one when diagnosed. She remembers being treated as a frail child and was brought up to do things indoors that did not require over exertion. She had her first hospital admission due to asthma when she was 5 and remembers it as a very unhappy time during which she attempted to run away. She lost a lot of her schooling through ill- health and was reliant on her friends to help her catch up on lost work. At the time the only medication given was a hand held nebulizer that was used with a drug called Neo-epinina, then later she was given steroids in tablet form which she remembers made her feel ‘hyper’. She veered from feeling reasonably well when on medication, to being ‘back to square one again’when she stopped taking the medication. During her teenage years her condition worsened and at age 14 she was absent from school for a full six months including 3 months in hospital where she stayed in a geriatric ward which she found very distressing. Keeping up to date with her friends was very difficult at this time and she felt frustrated that she was unable to join in with their activities and going out.

Although she was offered a place at university Jane was told at the time that she was too ill to go, and eventually took a job with the civil service, but it took a long while for her to be given a permanent post as she had to take quite a lot of time out of work due to asthma attacks.

When she was 25 she had a very serious asthma attack during which she went into cardiac arrest and was again admitted to hospital. Luckily she had been at the doctor’s surgery at the time and so was treated quickly; she was told that she was very lucky indeed to have survived. After a change in her medication when she was given a new inhaler she began to feel much better and although her asthma flared up about once every month, she was relatively well compared to previous experiences. For about the next 14 years Jane enjoyed a good quality of life travelling extensively and she gained promotions at work.

At about the time she turned 40 Jane once again found that her asthma was becoming worse again and eventually at age 50 she had to take medical retirement from work because she was no longer able to perform her role.

Jane discovered through looking up information on the internet that there was a condition called catamenial asthma which is related to female hormones and the menstrual cycle and she realised that her symptoms had always appeared on a monthly basis around about that time, and the time when she had the very bad attack may have coincided with the start of her peri-menopause. She asked her GP about this and though he had never heard of it, he did some research and confirmed that it was likely that this was the cause of her asthma episodes. She also has severe allergic asthma which is triggered by several things but primarily dust mites.

Over the years Jane has been on a variety of different preventer inhalers which she takes on a regular basis, as well as Ventolin used to relieve immediate symptoms, and she recognises the benefits of the newer inhaled steroids. However she has experienced some side effects such as thinning of the skin, steroid induced cataracts, high blood pressure, and mood swings when she comes on or off oral steroid medication. Jane has more recently begun taking a low dose of chemotherapy treatment once a week (Methotrexate) which helps suppress her immune system and has found it has worked well to help relieve some of the wheeziness she experiences generally. She also has to take folic acid regularly because of the effects of the chemotherapy treatment.

Asthma has interrupted Jane’s life over the years in many ways, such as finding it difficult to have relationships because it can be very difficult for others to witness somebody who is wheezing and having difficulties breathing. She has also had to accept that there are times when she has to rely on other people for day to day help, although there are also times when she is well enough to be fully independent.

Now Jane works part time at a lower level job that allows her some flexibility and keeps her active, but she feels frustrated at the drop in income that has been the result of her early retirement from her career and this has led to also having to accept a more limited lifestyle than she might have expected had she been able to continue working full time.

Jane feels upset that there is a general perception that asthma is a trivial condition and although she knows that many people have it at a relatively low level that can be well controlled, there are also many people who have frequent and severe attacks and whose lives are limited because of it.

Jane is monitored regularly by her GP and the asthma nurse and she usually takes advice when she feels she needs to adjust her medication and take extra steroids to combat a potential attack.

Jane’s advice to other asthma sufferers is to find out as much as possible about the condition and to establish what your triggers are, so that you can make adjustments to your lifestyle to lessen the impact of the condition, She feels it’s important not to let it dominate your life and to try to keep as active as possible within your limitations.

Asthma disrupted Jane’s childhood because there were times when she wasn’t able to join in with her friends.

I think what I found most frustrating was because I had friends, but I was never up to date with them, because I’d be off weeks and they would you know, I’d come back and I wouldn’t know what they were talking about or what their interests were and it was difficult, because I couldn’t go out at nights with them because you know, I was never well enough to do that. So I sort of, I suppose became quite not introverted but, I felt that I wasn’t sort of part of any scene really you know, especially at school. I didn’t have any, join any of the clubs or anything like that. 

Jane has had a successful career but had to take early retirement on medical grounds when her asthma flared up again later in her life.

I took the A levels and I got them. I got science, in the sciences and applied for university and I got accepted for [place] but I was too ill to go. They said try again the next year. And so I managed to get this job in a shop for where, enough to... handbags shop, this was when I was 18. But within a month I was off a week and I got sacked. Of course I don’t think that would happen so much now but …

I then got this temporary job in the Civil Service at a skills centre and actually quite liked it. I was a temporary clerical assistant and applied again for [place] and again I was accepted but again was too ill to go. So in the end I just gave up that idea and applied to be a clerical officer in the Civil Service and I was called what was called permanently unestablished which meant if I had more than three weeks off in the first five years, in each year of the first five years, for my condition of asthma, then the contract would be terminated.

And I was at [place] Skills… sorry I’ve done it again, but I should know as well. The staff there were brilliant and used to cover for me. I used to use my leave and use flexitime and everything. So I became permanently established.

I had a period of about 14 years where I had a really good quality of life I think. It was I went to Australia. I did all my travel, you know, travelling. I did all kinds of things and that would be from about 26, 8 to 40. I got promoted three times and I came down the [place] then in my early 40s, I just became as bad again as I was when I was 14 and that lasted for, solidly for 7 years.

And I tried my best to keep my job, you know, taking taxis to work etc. And in fairness to them they tried to give me jobs which didn’t involve travelling and in the end they said I had to medical retirement.

Jane finds it frustrating that it’s so difficult to get benefits because of the unpredictable nature of asthma ‘you can’t say you’re going to be poorly for the next six months, but you know yourself you will be’.

I get frustrated that you get asthmatics, severe asthmatics get very little help from the State. I don’t mean from the NHS. I’ve always had brilliant help from them, but if you want to apply for benefits, oh its unpredictable, you know, you can’t get, I’ve got a blue badge now. But I had great trouble getting that. Asthmatics, bad asthmatics have great trouble getting Disability Living Allowance (now replaced by Personal Independence Payment - PIP ) because you can’t say, you can’t say you’re going to be poorly for the next six months, but you know yourself you will be [laughs].

So that kind of thing frustrates me. I get I get that people still don’t seem to see that things are I think people think, especially perhaps more so now that asthma is just a trivial thing because 80% of asthmatics have it very well controlled compared to what it was when I was little. But they don’t seem to recognise 20% of us are wheezy all the time and it’s very difficult to manage.

Jane has had asthma for many years, but only found out via the internet that hormonal changes triggered her asthma when she was a teenager.

And it was at that I time I started to… I got the internet and I was doing research on the internet and I saw something called, on the Mayo Clinic a woman who said she was getting wheezy every time she had a period. And I thought every month. And I started keeping a record, and that was it. And of course, it suddenly dawned on me, I got, when I was 13, that’s when you get the rush of hormones, when you’re 40 you go into the menopause, you get the next rush.

And I went to the doctor and they all agreed it was something it was called catamenia asthma and he was really quite distraught that he hadn’t thought of it himself. He said he’d never heard of it. And apparently it’s quite common. More commonly known in America than it is here but the consultant I’ve got here is really very good and he referred me to a gynaecologist who said, “Well the only thing they can do is give you a hysterectomy, and probably it’s not worth it yet, you know, now because of your age.” So I thought well when, when I stop, when I stop having my periods it’ll get a lot better and it did, but it didn’t go away altogether and apparently because your hormones never go away, but it’s a lot, lot better.

Jane can start a course of steroid tablets if she feels she needs to and keeps a supply at home, but checks with the GP by phone to confirm that it is the right thing to do.

Do you stay on the same medication?

I do yes. I mean sometimes I put one of the steroid inhalants up but at the moment I just say on the same medication but supplemental with presnosol tablets.

And what are those for? What are those prednisolone…

That’s the steroid tablets.

Oh I see. And so do you take them every day?

No that’s what’s called the second line medication.

Yes, I’ve heard of people having that when they’ve got an infection or bad cold or something they can’t shift.

Yes.

But you take it generally when?

I would take it when I’m vulnerable and my asthma’s bad.

When you’re vulnerable. Hm.

I’ve got an emergency supply upstairs.

Oh right.

And I take antibiotics as well if I’ve got a cold.

So are you able to regulate that yourself and decide when and what to take?

I don’t like doing that with steroids because they’re such a dangerous drug really. So I’ll phone the doctor and I’ll say, “I feel I need to start the steroids.” And then he’ll say, “Well come in. You know, come in tomorrow, but take eight today.”

So you work quite closely with your doctor. It sounds like you’ve got a good relationship?

Yes.

Is that somebody that you’ve had continuity with over many years or …?

Yes, ever since I came to [place] yes. I found him by accident, because the first week I was at work I became quite wheezy and somebody said, “Well there’s a surgery round the corner.” And I just liked them from the minute I went in.

Hm. Oh that sounds like it helps. And the asthma nurse. Do you see her as well as the GP?

I see her as well the GP.

And what kind of thing happens when you go to see the asthma nurse?

Well she does a peak flow. Peak flow reading. She just asks about the drugs. Checks to make sure that I’m still using the inhalers correctly. Checks to see if I’ve got an asthma plan. Does all the right things really.

And what is in your asthma plan?

Just sort of increase the, the first line would be increase the steroid inhalant, and if it goes down further by x% take the steroid, see the doctor, if it falls down there, call an ambulance.

So it’s a kind of written plan of what you do in different circumstances.

Yes.

So how confident do you feel about that kind of, the support network that you’ve got around monitoring of you asthma?

Oh I’m very... I think it’s one of the best, the surgery and the, in this area is excellent to be honest. I’ve never had such good treatment.

Jane has had times in her life when her asthma has been very bad and she has been admitted to hospital, but she tries to avoid it. She can generally recognise when it’s time to get help.

I try to avoid it, but there are times when it is inevitable. I mean, I think the thing I don’t like about hospitals is the, is the regime, you know, which has to be because it’s a hospital. Whereas I tend, at night times which I find the worst because you’re by yourself and you can’t really feel like phoning anybody or anything like this when you’re sitting wheezy so you have may be a cup of tea and you watch the television. You can do all that when you’re at home, but in hospital you’ve got other people to think about. So you’re just alone with your thoughts at night.

And in terms of that bit, do you live alone? I’m not quite sure do you live on your own?

Yes. I do, yes.

And is that a worry for you. Or a concern at all that you’re here by yourself?

It was very much when I was having, when I went through that really bad spell. It’s not so much now because I’m able to get out and about. I’ve got a car I can drive so… I get out and about for that.

And so do you have something, I kind of a plan for you know, if things went downhill or you were taken ill or something?

Well my GP is fantastic, as is my consultant. So I just need, I mean I get told off by the GP for not calling him out, you know, not at all for not calling him out unnecessarily. So he would, they’d come out. They’ve got a really good network, they got a GP Cooperative in [place] so you can see a GP any 24 hours, you know, any time, any period of 24 hours. And if it’s the middle of the night they’ll send a taxi for you to take you to [Hospital] to see the Cooperative GP.

So is it a case of being able to recognize when you actually, at the point at which you would perhaps need some help?

Yes. Yes. And I’ve got an emergency admission card as well so … And I know I can phone an ambulance as well. I’ve only ever done that once.