Employment and Cystic Fibrosis: Jimmy's Journey

Jimmy Gregory shares his story of how, with the help of The Prince's Trust, he hasn't let cystic fibrosis stop him achieving his dream of working in the creative industries.

As a young child growing up in the 1980s I was pretty carefree, getting up to all the kinds of mischief that’s expected of a kid who’s just been let loose on the world. As the 1980s gave way to the 1990s, life began to get serious quite quickly for both myself and my family. I developed a very serious and inhibiting cough which prohibited me from throwing myself head first into all of the childish activities that I’d been so actively involved with before. 

I was in and out of the local doctor’s surgery so frequently that, looking back now, I really feel annoyed that I wasn’t offered some kind of loyalty card! Each time I paid a visit, my parents were told that I was suffering from asthma and that, although the inhalers they had prescribed in the past weren’t working for me, they could prescribe another which ‘should’ alleviate my symptoms. Each time we’d leave and trial the new treatment in the hope that my condition would improve...

...It didn’t.

I was quickly deteriorating and it got to the point that even the short walk to school each morning would become such a chore that I would regularly have to take breaks to catch my breath and on some occasions I would cough so much that I would be physically sick.

It took a long period of going back and forth to the doctor’s surgery before they finally relented and referred me to Leicester Royal Infirmary who took a chest X-ray, saw something was wrong and sent me for the ‘sweat test’ which led to a diagnosis of Cystic Fibrosis. Being a genetic condition, my younger brother was also tested for the disease and although he was not showing any symptoms at the time, he was also diagnosed.

As you can probably imagine, this double dose of bad news hit family life like a sledgehammer to the chest. No parent wants to hear that their child is ill and similarly no child wants to hear that they are no longer ‘normal’. To also find out that you’ll require frequent stays in hospital and that you’re life expectancy has just plummeted, is a pretty bitter pill to swallow as an eight year old child.....and I’ve swallowed plenty of pills in my time.

Despite my condition I’ve always been fiercely independent. I love my parents to bits but as I entered my teenage years I wanted to show them that I could fend for myself and that they could begin to take a step back from their responsibilities. As a result I made a conscious decision to continue my education away from my home town of Leicester. And so I ended up studying Media Communication at the University of Lincoln.

It was here, whilst doing a unit in desktop publishing, that I fell in love with Graphic Design. From this moment, I began to tailor my studies and my extra curricular work towards creative projects. This involved working on some marketing projects for the Student Union, a local charity and also creating a music magazine as part of my final year independent study.

Upon graduating I moved to Leeds to pursue a career in the creative sector and applied for every single design job going. Competition was incredibly high and I received my fair share of rejection letters and emails. To pay the bills, I worked in the correspondence department of a major car manufacturer handling customer complaints. Although I was good at the role, it wasn’t an area that inspired me and so I continued to apply for design jobs throughout. After just over a year of handling complaints, I got what I thought was my lucky break and I accepted an entry level job at a local design firm.

Unfortunately, this coincided with a downturn in my health and I was admitted into hospital within the first few weeks of the role. This, along with a few rookie errors, meant that my probationary period was not extended. This hit me hard and I felt that the creative career ladder had been snatched away from me before I had even had the chance to plant my foot on the first rung. I became quite depressed and once again my health suffered.

This led to me being signed off for around two years, but throughout this period, I never felt comfortable just accepting tax payers' money to cover my rent and to pay for the groceries in my fridge. So I made a pledge to myself that once my health improved, I would return to the workplace. Whether it would be within the design sphere, or biting the bullet and returning to customer service didn’t phase me at this point. I just wanted to get back into the workplace and become self sufficient once again.

It was then that my mum told me about The Prince’s Trust and although I’d heard of the charity, I wasn’t aware that they could offer any kind of support to someone like myself. However, my mother being the stubborn and persistent woman that she is, persuaded me to get in touch and I ended up enrolling on the Enterprise Programme which looks to support those who are considering setting up their own business. The course itself gave me the confidence that I could realise my design ambitions and even if no studio was willing to take the chance on me, I could still go it alone and establish myself as a freelance designer. So upon completing the course I set up Tearaway Studios, my own small and very humble graphic design label.

The first few months were incredibly hard and I would have actually been much more comfortable on benefits. But I took solace from the fact I was now making real steps to realising my dream and getting paid for the thing I love.

Slowly things began to snowball and customers began coming back for more work. I applied to The Prince’s Trust for a business loan which allowed me to upgrade my software and invest in a professional website to showcase my work. That was two years ago and since then I haven’t really looked back.

I’m still running Tearaway Studios and I’ve worked with clients across Europe, Asia, America and Australia. I now also work for The Prince’s Trust as a Job Ambassador on a 12 month contract and my involvement with them has enabled me to meet and speak with HRH The Prince of Wales on two separate occasions, as well as various celebrities including Dynamo and Will.i.am. I’m also about to launch my second business which looks to help the next generation of creatives to break into the industry.

As you can see, it’s a pretty exciting and busy time for myself. CF has always had a profound effect on my life and restricted some of the things that I can do, but I have never let CF rule my life.

(This blog was adapted from a speech given by Jimmy at an event at Harewood House, Leeds to an audience including HRH The Prince of Wales. The picture above shows Jimmy (centre) meeting The Prince of Wales at the event)

CF Week 2013: Ed's Blog

Cystic Fibrosis Trust CEO Ed Owen looks back on an incredible week raising funds and awareness for cystic fibrosis, and the controversial but critical subject of transplantation.





We're into Day 5 of CF Week 2013 and together we've been making a real impact across the UK, which has only been possible because of our amazing supporters. 

Thank you to everyone who has supported our transplant campaign by speaking so eloquently about the difference a transplant makes. By sharing your stories you've enabled us to raise awareness of the issues surrounding transplantation in every BBC and ITV region.

Transplantation is now firmly established as a health concern within the media, at a time when there is immense competition for space and airtime. In many of the media interviews journalists asked about the crucial issue of the shortage of organ donors.

This week we have also been raising awareness of the issues with politicians across the UK, helped by parents and relatives affected by cystic fibrosis, and clinicians.

We met the Welsh Health Minister, Mark Drakeford, during the week to discuss transplantation policy. The Welsh Government is currently considering moving towards a soft opt-out system of organ donation.

And finally, a massive thank-you to everyone who has been fundraising, raising thousands of pounds for the Trust. We've been posting your photos and highlighting your CF Week activities on Facebook, and we really appreciate all your support. We are fortunate to have such a dedicated and committed community of fundraisers who turn out time and again to support our vital work. We can't achieve anything without you, and we are truly grateful to you all.

You can learn more about the human side of transplantation from the films and stories some of our supporters have shared for CF Week.

CF Week 2013: Sam's Blog

Sam appeared in our CF Week campaign in 2011, when he was on the waiting list for a lung transplant. After coming through five years on the waiting list, the operation itself and some post-transplant health scares, he is now enjoying being a teenager and looking to the future.


Hi I'm Sam, I am 14 years old and am one of the feature case studies in this year's CF Week. You can watch my video here.

I was pleased that the topic of CF Week this year is transplantation as this is a theme close to my heart.

I waited for five years for my transplant call to come. I was 13 when my call came and the operation was carried out at Great Ormond Street. When the call came we were blue lighted to the hospital, I remember feeling really excited but really scared at the same time! We got final confirmation of the transplant at 03.00 in the morning.

I was lucky to get my transplant in time and now I'm looking forward to the future. I will be choosing my GCSE options soon; I'm joining in with sports again, going out with family and friends and being a teenager. I can't say it’s been an easy year and we've had some health scares post transplant but I'm here and cystic fibrosis is not gong to stop me.

I am pleased that the Cystic Fibrosis Trust is highlighting the problems for people in getting a transplant in time, and starting a consultation on to how to improve rates of transplant and informed choice for children and adults who find themselves on the transplant list. I hope that everyone gets their call in the end. 

So please get involved with CF Week. I will be doing my own big bounce and there are lots of other ways to raise funds too. Visit www.cysticfibrosis.org.uk/cfweek for ideas and help the Cystic Fibrosis Trust carry on its work to improve the lives of people like me.

Sam x

CF Week 2013: Mike's Blog

Mike Mackay, from Witham, Essex, is living life to the full after transplant.





Mike here, I hope you are enjoying CF Week this year, my film is available to watch now.

When I was younger, I decided that a transplant wasn't for me; it seemed like a lot of “hassle” to go through. Yet, when the time came, it was something I wanted more than anything in the world. The more I began to struggle, the more I wanted it. Only I never ultimately knew whether I would have one or not...

I consider myself extremely fortunate to be here now, writing this. I've known many who haven't been so lucky and I feel it's only right that I make the most of this second chance at life. Before my transplant I was wheelchair bound, eventually bed-bound on a ventilator; I wasn't really living but just existing. I thought my time was up - I never thought I'd be doing silly things like completing the London Marathon or working in a full time job. In September I'll be climbing Ben Nevis to celebrate my sixth transplant anniversary. All of these achievements highlight just how much a transplant can change a life.

Without the generosity of my donor, none of this would be possible. Without donors, many people representing CF Week this year wouldn't be here. Organ donation is so important and the work the Cystic Fibrosis Trust does reflects that.

Without people like you, there wouldn't be people like me.

www.cysticfibrosis.org.uk/cfweek

CF Week 2013: Philippa's Blog

Philippa, who was one of the first people to receive a transplant in the EVLP pilot, talks about the new lease of life her transplant has given her.



The Ex-vivo Lung Perfusion (EVLP) technique uses a modified dialysis machine to turn lungs that were previously deemed unfit for transplant into suitable donor organs.

For about a year or two before my transplant I was very poorly, I didn’t really have a life; I was just existing. I hardly went out anywhere as it was such a huge effort to get ready, and by the time I got dressed I was exhausted. I didn’t want to catch any new infections either. My lungs were functioning at just 17% and I would watch my friends and family live their lives from the side lines. 

I was on oxygen 24 hours a day, taking a massive cocktail of drugs, including continuous intravenous antibiotics and a range of nebulisers. I had to use a wheelchair if I did go out anywhere as I couldn't walk very far and I used a ventilator overnight to give me a rest from breathing. I couldn't do anything for myself such as having a bath or getting dressed as I just didn't have the energy or the breath. I was very weak. I also had to drop out of university as I was too ill to finish the course. That was a huge blow for me.

But now, I have an incredible new lease of life. Since my transplant I have been on holiday a few times, got myself a full time job, found love, moved into my own home and now I am planning my wedding, which is next year. My lung function is 126%, which I still can't believe! Two years ago when I was so ill, I never once imagined that life would be this fantastic after transplant. I still have to pinch myself to make sure this is not a dream.

I strongly support CF week because I want to help raise awareness of cystic fibrosis, but I also want to raise awareness of transplantation. A double lung transplant is very much the last resort, when your own damaged lungs are failing. Yes it is a massively scary time, one in three people with CF waiting on the transplant list don’t make it as there is a huge shortage of donor lungs. The wait itself is exceptionally difficult, but it was the only way forward for me.

Put simply, I wanted to live – so I had to do this. Because there is such a shortage of donor lungs that are suitable for transplant, doctors have recently been pioneering a new treatment where previously unsuitable lungs are treated to make them usable – this is the type of transplant I had, it is known as EX-VIVO, and was funded by the CF Trust. And I can honestly say my lungs are amazing, my life now is wonderful and I have no regrets whatsoever.

Watch Philippa's video about her experiences.

CF Week 2013: Emily's Blog

Emily, who has been waiting for a lung transplant since December 2012, describes life on the waiting list.



Hi I'm Emily and I'm the first of this year's CF Week case studies. You can watch my video online at www.cysticfibrosis.org.uk/emily. I am supporting CF Week this year because the focus is on transplants. I have been waiting for my all-important call for over eight months now, I have had a false alarm and been very ill. I really want to raise awareness about the need for more lungs to be made available. Here's what waiting on the transplant list is like:

As most people with cystic fibrosis will tell you, you start off in your early years coping with all medications, or rather your parents do! You start taking the nebs and feeling like you really are beating cystic fibrosis, you get to your teens and start to think about your future, then suddenly, infection after infection slowly takes away your lung function. I had a terrible time last year and ended up in hospital for 10 weeks with a collapsed lung. I was put on the transplant list in December 2012, and my lung function is now at 25%. I am using oxygen 24/7 and a machine to give my lungs a rest called Bi-Pap. It’s exhausting.

To raise my chances of getting that all-important call I am signed up to receive reconditioned lungs through Ex-vivo Lung Perfusion, this is just one of the research projects funded by the Cystic Fibrosis Trust, with support from the Robert Luff Foundation. It is just one reason why donating money during CF Week or any other time of the year to the Cystic Fibrosis Trust is worth your while. If it means I and others waiting for lungs get their call it will be worth it.

My friend Tom Chalk is running a 250 mile ultra-marathon for the Trust to help fund vital research. Visit his fundraising page if you want to support him: http://uk.virginmoneygiving.com/TomChalk.

Don't forget to read more about the consultation being launched today, this is now open for people to respond to, you can find this here. Hope you enjoy the video and the Week.

Emily

x

Watch a video about Emily's story.

Ed Owen, looking forward to CF Week

I am looking forward to this years CF Week. Here at the Trust we are having an event every day.  It promises to be as lively as ever with over 100 events across the UK during the week. As we embark on our fundraising events there is also a serious side to the week, the campaign on transplants. This area forms a major part of the Cystic Fibrosis Trust's work this year. With improved treatments, better understanding of cystic fibrosis and continued research, people with cystic fibrosis are living longer than ever before, and often with a better quality of life. There has never been a more positive time. However, sadly, people with cystic fibrosis will still succumb to the effects of the condition, which does the most damage to the lungs. It is still the case that the biggest cause of death in people with cystic fibrosis is due to lung failure.

For some the only course of treatment is to receive a transplant, but once accepted on to the transplant list the wait can be as long as 412 days, or 3 years.

For 1 in 3 that call never comes.

Too many people are waiting too long for transplant, there are still issues with a lack of available lungs and a lack of facilities to successfully retrieve lungs.

This is a hard reality to face, but the devastation for families who lose a loved one to cystic fibrosis is mine and our driver for change. People who need a lung transplant with cystic fibrosis are usually under 40 years old. For younger people the possibility of many more years of life after a successful transplant gives hope to them and their families. People waiting for a transplant should be able to receive one. That is why we are starting CF Week this year with a strong message. We want the policy makers, transplant and clinical community to join us in a consultation to find a solution to the problem of people with cystic fibrosis not getting the lungs they need.

The Trust will be highlighting to the media the cases of people with CF who have agreed to share their experiences of being on the waiting list.

Log on to www.cysticfibrosis.org.uk/cfweek and find out more about the issues around transplant, join in with our consultation, we want to hear your views.

Have a good CF Week.

Ed.