My name is Elaine Betts, I was born in 1970 and from a very early age I started to learn some very significant life lessons - ‘You can decide where you focus your energy and whether you deal with life and transplantation in a positive or negative way. You will always have choices!’

Elaine is shown here aged three - at about the time she was diagnosed with Cystic Fibrosis. If this was your daughter, younger sister, niece or neighbour what future would you want for her? Organ donation is a difficult issue for many people, but the needless premature death of a much loved family member is even harder to contemplate.

My life has always been challenging so here’s a very brief health time line:-

• 3 years of age (1973) parents discovered I had a genetic disease called Cystic Fibrosis
• 18 years of age (1989) became a Diabetic
• Late 20’s started to suffer from Osteopenia
• 25 years of age (1995) went on active transplant, eight months later health improved so I was removed from the active transplant list
• 32 years of age (2002) went back onto active transplant list, passed four HR exams and changed jobs twice
• 36 six years of age (2006) had a double lung transplant
• 38 years of age (2009) start off Osteoarthritis in the spine.

So what is my world really like?

Throughout my life I battle, laugh, cry, learn, work hard and enjoy life. At times I forgot to appreciate and value my family but one thing has never altered and that’s my determination to make the most of any good or challenging situation.

I don’t quite know how I have managed to survive for this length of time not because of the above but because I am so sarcastic.

Most people look at me and say ‘wow you are looking good’ even on the days when I feel like collapsing. I made the choice to enter into the art of illusion. People who spend a lot of time around me see the ‘reality’ behind the looks. This article discusses my world.

The photo to the right shows me tubed up for oxygen before my transplant.

I spend my days juggling so many balls. I’m surprised I haven’t yet knocked myself out. The day starts with checking my temperature, lung function capacity, taking 16 tablets, 2 injections, 1 inhaler and that’s all before I have breakfast and go to work. I would love to say I’m not hungry after all that but alas I spend most of the day wanting to eat anything insight compliments of the steroids. I have had to learn to control what I eat and accept the new chubby steroid cheeks look… Another choice. By the end of the day I have taken around 40 tablets, more inhalers, insulin injections and I’m still fighting the hunger feelings.

The Steroid challenge

The next challenge is what do I eat as I now have high potassium levels so quite a few foods that I used to enjoy and that helped control my diabetes are now out of bounds. The lure of hunger from the steroids always helps me over come this challenge and hence I’m never going to starve or be thin.

Despite the double lung transplant the Cystic Fibrosis stays with me for life. The photo on the left (post transplant) is the first time I went dancing without going blue! Life is for living.

The summer always brings a smile to everyone’s face and I’m no different. I also have the added bonus of water retention therefore wearing larger shoes, taking water tablets and visiting a lot of toilets have become a summer art along with applying false tan. Just because I can’t spend much time in the sun why should I look like Casper the ghost!

The high blood pressure doesn’t cause me problems I just pop the tablets and try to find ways to stay calm although I haven’t mastered staying calm as we live in a very bureaucratic unfair society.

I thought my transplant would remove some of the barriers I had faced all my life with cystic fibrosis but the reality is that I feel like I’m discriminated against even more.

The doctors have given me the chance to live so I want to travel and see the world. Obtaining travel insurance is a very upsetting, annoying, time consuming, stressful process as the majority of insurance providers feel I am a high risk case. They have a general attitude of offering insurance cover for everything but my lungs (slight problem if they stop working I die) or the premiums are extortionate.

The Insurance & Benefits battle

In the past I have had to resort to the radio to express my disgust in order to find an insurance provider that could meet my needs. What I find immensely funny is the homeward journey when I see those supposedly ‘healthy’ people in plaster, wheel chairs or looking unwell getting on the plane with me ‘Miss High Risk’, looking healthier. I haven’t claimed on a travel insurance policy since transplantation and yet I’m still deemed high risk. This is one battle where I refuse to concede defeat.

[The intrepid Elaine taking a flying trip in the Spring of 2009 - shown here with her instructor.]

This ‘high risk’ insurance provider status suddenly disappears in the eyes of the benefits system. This system perceives me to be too healthy and from my perception is inflexible, doesn’t understand the challenges transplantation brings and subsequently benefits are stopped. This is one battle I have resigned myself to accept as I don’t want to waste precious time in my life fighting a battle I feel is impossible to win alone… another choice.

My health is managed by a multitude of professionals ranging from GP, various hospital teams and consultants. The final challenge to prevent me from getting bored of life is finding a patient friendly solution relating to who should be responsible for prescribing my medication. We are all individuals and shouldn’t have to fit into a nice little box. Currently I have to obtain my prescriptions from various sources rather than one central point. The patient does not have a voice or a choice in this situation… but hey why should life suddenly become easy and uncomplicated!

Transplants transform lives

Despite the continuous challenges and life choices I’m determined to laugh all day, love my family and friends, maximise the time I have, work full time, be clear about what I will or won’t accept, try new activities such as Quad biking, visiting Australia, flying in a Stampe Aeroplane and drive the doctors mad with all of my questions. The greatest part of the day is waking up, breathing without the aid of oxygen, walking and not coughing.

If anyone is considering having a transplant the only thing I will say is that you have really got to want to survive, be willing to put in the effort and hard work that is required for success and happiness.

[The photo above shows Elaine proudly holding her neice. Elaine is now her Godmother. To the right we see Elaine rehearsing for a part in 'Those Magnificent men in their flying machines'.]

The transplant has completely transformed my life, it’s now truly amazing. Yes I still have a lot of medication, suffer from medication side effects, possibly have some of my donor traits but I’m the still the same mad, crazy person who is experiencing things I never dreamt would be possible.

Transplants really do change people’s lives, for me it’s a really positive experience. I would urge everyone to join the donor register to enable other people to have the chances to receive the magnificent gift of life. So where ever you are and what ever you are doing, appreciate the people around you, make the most of what you have got and enjoy life.

If you want to hear more about my life you can contact me through this website.

To become a donor please visit the UK transplant website:

http://www.uktransplant.org.uk/ukt/default.jsp

Now I have told you all about my amazing life it’s time for you to go and create your own wonderful life, good luck and enjoy.

I am extremely grateful to Elaine for sharing her experience. Elaine and I met at the Wythenshawe Transplant Clinic back in 2006. Her feisty attitude has helped her to get through so much. Life is tough when you face so much physical and mental adversity, but her zest for living always pulls her through. It is a very depressing thought that about 50% of Cystic Fibrosis sufferers that are placed on a lung transplant waiting list will die before the operation. This is simply because not enough suitable lungs are donated when a person dies. Elaine's observations about insurance are very common for all transplant recipients. Insurance of any type can become very complicated and really expensive. The same is true for getting mortgages and loans. We would be delighted to hear from any insurance and mortgage brokers that could provide comprehensive insurance and financial packages that would not break the Bank of England. Elaine’s determination has enabled her to retain her work. In fact she has studied even harder since her operation to climb the Human Resources career ladder. For so many transplant recipients full time or part time work is not an option because of the various medical problems they pick up on their journey to a transplant. Elaine’s comments about the Benefit system will be really familiar to many transplant recipients. Very often benefits are withdrawn prematurely or inappropriately. It is essential that transplant patients comply with their treatments and medication or they will die. This is an expensive process having to make numerous visits to transplant clinics and perhaps having to take time out from work to do so. We would be grateful to hear your experiences on this issue. For more information about Elaine please go to the following web link: [The New Start Charity/Wythenshawe web link] To get more details about Cystic Fibrosis please use this web link: [The Cystic Fibrosis Trust web link] More information about lung transplants can be found at the following NHS Choices web page: [NHS Choices web link]

TRANSPLANTS SAVE LIVES, MONEY and MISERY.