Nicola had a heart and double lung transplant 20 years ago. Her ten year old daughter, Megan was the third ever to be born to a woman after such a transplant and Nicola was the first to give birth naturally.
On Saturday, I travelled to Eastbourne, on the Sussex Coast, to meet Nicola and Megan. I bought along my three children too for a day at the seaside. We all had a lovely time together, once again, it was more than a photo shoot, it was day with new friends. I know we will see them again too. Ellie and Megan are the same age and had a fantastic time together. We wondered through the arcades on the pier, consumed all the seaside treats and then worked the calories off walking along the beach where Ellie and Megan immediately jumped up to their knees in the sea. While the children were all playing, Nicola and I had the chance to relax and chat.
It is fantastic for me to hear Nicola's story. It gives me great hope to think of William still with us in 20 years time. Nicola has had a fantastic life and has achieved a great deal, not least her wonderful family. But her story is not all a happy one. Transplanted organs do not last forever and Nicola now has just 25% of her lung function remaining. Her struggle was clear to me. We had to leave the pier as the wind was literally taking her breath away and, after an hour or so on the beach, Nicola was tired and suggested we all went back to their home for a rest and a cup of tea. While we were there, she showed me her album of newspaper and magazine articles that have been written about her to help raise awareness of organ donation. She and Megan even held the front page when Megan was born. In addition to her campaigning, Nicola has set up a charity, look beyond the heart, to help support transplant recipients through the ups and downs of life after their operation and the medical treatment they need to stay alive.
Nicola's future is now dependent on the success of campaigns to raise organ donation awareness. She is realistic and knows that her lungs are likely to last only 5 years more at the most. Her only hope beyond that would be for a second lung transplant but she has been told it is very unlikely she will be offered that chance. There are simply not enough donors to enable people who have had a good and long life after a transplant to be given another organ to extend their life even further. It is a very difficult question in medical ethics. You only have so many organs to offer and who should have them - the young patient who has not yet had a chance at adult life and will die in the next two years without a transplant or the patient who has had a great 20 years after transplant, built a loving family around them and will leave behind a daughter? If there were enough donors, both could receive one.
The desperate shortage of organs for transplant was something that was very much on my mind as I travelled home. William had his transplant at 4 so, like so many other children who have received transplants, his chance at reaching adulthood could depend on there being sufficient donors to enable him to have a second transplant. I am hoping this will not be the case and that the advances in rejection prevention and treatment as well as detecting and treating infection and transplant related cancers will mean that his bowel lasts him a good lifetime but there are lots of uncertainties in a life after transplant. Living with these uncertainties is a lot better than life before transplant when things are a lot more certain. If you don't get the transplant you WILL die. With that in mind, I was absolutely delighted to switch my computer on when I arrived home and see the news that Jess had been called for transplant. Within half an hour, all hopes had been turned to disappointment and sadness for her when she updated Facebook with the news that it was a false alarm, her eigth call end this way!
The lack of donors is something that others who have been involved in this project are also experiencing at the moment. Oliver will always be very special to me as he was the first person I photographed for this. I am so glad I took those happy photos that morning as they are the last ones of him looking like that. That very afternoon, Ollie became very unwell and has not returned home from hospital since. His has been in and out of intensive care and operating theatres and his Mum has been told to start thinking about transferring him to a hospice. Ollie's time is very much running out. He is 7 years old! His Mum is amazing and very, very strong but it is heartbreaking for her and I so hope and pray a suitable donor can be found in the nick of time for him.
On a happier note, Gabrysia did receive her new heart just over a week ago and is doing very well and out of intensive care.
I really want this project to raise awareness and make a real difference in saving lives. Plans are coming together for the exhibition in London from December 14th - 19th and for the photo book. While working on these and seeing them through, I am also looking into 2010 when we hope to send these images aound the UK so as many people as possible can see the stories they tell. This is where I need your help. If you know of anywhere in your area where the exhibition could be shown then please do get in touch. The email address is on the main website. It doesn't have to be a traditional gallery, just anywhere where people go so it can be seen. It could be a library, a school, a community centre, hospital, shopping centre. Someone has offered to put it up in her pub. Please do have a think about that. I am doubling my efforts now to make this as successful as possible.