Cystic Fibrosis – and a unique Birthday Gift…

June 13, 2013 by
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IN CONVERSATION WITH: Rachel Agutter

Have you ever wondered what you really mean to your friends? Last summer, I was lucky enough to find out – in the most magical way possible.

It was one of those hot dusty London nights when nothing much seems to happen, and I’d popped round to my friend Emma’s house in Putney for a drink. I’ve been blessed with wonderful friends, and we’re always getting together in the evenings just to chat about our days, so I wasn’t expecting anything special.

But this evening – far from being the usual chat about men, jobs and shoes – turned out to be one of the most memorable of my life. Because when I walked into her home, I saw my family, my boyfriend Adam, and a handful of my closest friends standing round two large boxes covered in bright wrapping paper. And when they saw me, they began a chorus of Happy Birthday, and cheered, and broke out Champagne.

It wasn’t actually my birthday – that was two months before and I had been stuck in hospital – but there was certainly a gift for me. Looking at the boxes, I guessed immediately what it was. ‘It’s a Vest,’ I said, stunned, and then burst into tears of happiness and disbelief.

My parents confirmed the truth: it was The Vest – a piece of physiotherapy equipment that costs a staggering £12,000. My friends had emailed everyone I had ever known from school to university to work, from my family to friends of my family, and asked for donations – however small – so that I could have this amazing piece of kit. They had even printed out the emailed replies and bound them into a book as a very special record of our friendship. It’s hard to imagine anything more generous, touching – and thoughtful.

I’ve never kept my cystic fibrosis a secret – I can remember even at the age of four having to eat handfuls of pills with every meal. Everyone at school knew and I suppose I equated it with something like asthma.

There was nothing I couldn’t do – I was on the school gymnastics team, for example. In fact, we did sport for an hour every day, and I think that must have really helped my lungs. I certainly didn’t feel different to any of my friends.

Cystic Fibrosis: drug rationing

When I was 15, my parents managed to get me on to a drug called DNase which costs £25 a day and is subject to rationing on the NHS. My parents had to fight to get it for me but somehow the doctor found the budget for it, and I’ve taken it ever since.

DNase thins the mucous so you can cough it up more easily, and the lungs don’t get infected. It definitely improved my lung function.

After school I secured a place at Reading University to read zoology. But first my girlfriends and I decided to take a two-week holiday in Ibiza. We partied like mad and had a great time. But afterwards, for the first time, I fell quite ill. It took me six weeks on antibiotics in the Royal Brompton hospital before I felt strong again, and it was my wake-up call. It was time to start looking after myself.

Even so, I had a great time at uni and afterwards I went travelling for a year round the world with friends, working for a time in Sydney. We bought a car and went all over Australia. I took my pills, and I had brought a portable nebuliser – a machine that changes liquids into a fine mist that can be inhaled – which could be plugged into the car cigarette lighter. I must confess I wasn’t that good at doing my physio; I felt so good and was so active, I sort of let it slide.

When I returned I began a job in the City working as a PA for a group of brokers.  But that was fairly horrendous – long hours and a terrible culture. I don’t look ill so no one really took my CF seriously. I ended up being hospitalised again and decided to resign.

Later my doctor and family had to sit me down and point out that I had been pushing myself too hard and needed to consider working part time from then on. My health had been steadily getting worse in general, and I’d gone from never being in hospital to needing short stays twice a year.

CF chartAll CF sufferers end up having hospital stays so that they can get intravenous antibiotics to combat the endless chest infections. Some need the drugs so often that they have a permanent port fixed into their chests to make it easier. Luckily I’ve never been that bad – although I would consider it if needs be in the future..

But when you do go in, the courses of antibiotics last two weeks so that’s the minimum you have to stay for. It’s knackering: you get the antibiotics administered three times a day – at 6am, 1pm and 11pm. The physiotherapy is intensive too.

When I started work again it was in temporary jobs. I tried being a receptionist but it was de-motivating and depressing. I felt I could do more with my life: I had the high expectations of my peer group and wanted to match up to their successful satisfying careers. It was so frustrating.

Finally I decided to retrain as a picture researcher and that’s what I am doing now working on a teen magazine. I’ve learnt so much and I really enjoy my job now. Had I known earlier what I know now about how inhibiting my lack of stamina would be, I would have done a totally different degree in a subject such as graphic design where work is more flexible.

That’s not the only thing I’ve learnt. Looking back, I should have taken my physio sessions more seriously too. Most teenagers with CF are told to be religious about their exercises – but many aren’t. Yet, if you don’t do them your lungs sustain damage; I could have protected mine more. On the other hand, I wouldn’t have had so much fun.

Which is why when my friends got together to present me with the Vest, it couldn’t have been a more appropriate gift. They knew the repetitious exercises got me down. When I strap on the Vest, it vibrates my chest, performing the exercises for me. It’s great if I’m feeling really tired – and I can even call someone for a chat while it’s working away. The Vests are controversial in this country – not everyone believes they work, but for me it has.

 

Cystic fibrosis is not a nice disease but the imminent gene therapy and inventions such as my Vest do help. Sometimes I feel depressed about when this therapy will actually be available – I can’t see it happening in time for me. But I try to stay positive.

And I try not to worry about the future – I prefer to live from day to day. When you’re heading towards 30, all your peer group are considering children and marriage. I don’t know if that is a possibility for me, but I won’t rule it out.

My boyfriend Adam and I have been together for three years and he is incredibly supportive of me. I’m sure he has thought about what will happen as I have. Whenever I am in hospital, he comes in every day. And some days are harder than others. I’m more scared when I’m not very well, which is probably natural.

I think it is important to read everything you can about a condition like this so you can be prepared.  I’ve read a lot about heart/lung transplants. I don’t need one now but I do need to be aware of what the procedures might be. It would be wonderful if we could change our donor system so that everyone has to opt out of being a donor rather than the other and current way round.

I hope Gordon and Sarah Brown let Fraser do whatever he wants – as my parents have done with me. It would have been awful to have been wrapped up in cotton wool. I’m 28 now, and I know that current life expectancy for my condition is only 31. So I know the clock is ticking.  But there is much hope for the future. And I believe it is far more important to lead a full and happy life than to get to 80, without much to look back on.

 

The email sent by Rachel’s friends:

Subject: GOOD NEWS!!!

Dear friends of Rachel,  

We all love a bit of good news, don’t we? Especially when that news belongs to one of our friends. Even better when that news is potentially life changing, and you’ve played a part in it.

Well, here’s a chance.

A group of us have come across something called ‘Little Vest’, which we know could help Rachel. It is known to medics as the HFCC (High Frequency Chest Compression) and is a device worn like a vest. It works by vibrating to clear the thick sticky mucus from the lungs, something that can take hours of physio a day. It means that Cystic Fibrosis patients can wear the vest watching TV and don’t have to spend hours doing it on their own, or avoiding doing it all! The vest is a revolutionary bit of kit and patients feel infinitely better after wearing it than they would after a standard session of physio.

We know Rachel really wants a vest but doesn’t know how to get one, as her Doctor cannot provide her with one and they are not available on the NHS. We have set our hopes on getting one for her, although she has no idea of our plan!

On the 16 July it will be her 27th Birthday, and we are aiming to give her the surprise vest as close to then as possible. Our project is fully under way: we have got her prescription, spoken to her physio and reserved a vest in the USA. But there’s a hitch: at £6,000 it’s an expensive vest!
So, we need your help. It sounds like a fortune but if everyone on this email gives generously we would be able to raise the cash and give her a Birthday to remember!

How often have you wished you could help Rach but you don’t know how? We think this will really make a difference. Rach goes a long way in helping herself: she is optimistic, a great friend and brilliant fun. She makes other people want to be around her and want to help her.

We would love to deliver some good news to her on the 16 July.

If you would like to be a part of it, please reply with a message for Rachel, (we are going to make a Birthday booklet of all your messages), and transfer your cash into the following account (it might be handy if you use your name as a reference so that we can keep a track of the account):

‘Little Vest’ would be something small that we are sure would mean a lot, both to her health and to her personally.

Love Ed, Emily, Lorna, Emma and Nic

P.s. Please forward this onto everyone you think might like to be included or those we have missed off the list……… Remember it’s a surprise!!!

About the Author

Victoria Lambert has been a journalist for more than 20 years, and specialises in health and medical matters. She writes for the Telegraph, the Times, the Sunday Times, the Guardian, the Mail and the Mail on Sunday. She contributes to Saga, Geographical and First Eleven magazines – where she is the agony aunt.

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