Nicola - 20 years on!

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.

Nicola and Megan are enjoying every moment they have together

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.

'Newsagent Ken'

One of the most exciting things about the 'Gifts of Life' project is the way that it snowballs and people know someone, who knows someone... and I get to meet all these fascinating and inspiring individuals and photograph them.

The lovely Helen (who I will be photographing at work in the City at a later date..) got talking one day to her newsagent and found that he is part of a family who donated their brother's organs after he died suddenly. Ken is affectionately known as 'Newsagent Ken' and I could see in the short space of time I watched him and work and photographed him exactly why. He knew everyone who came in by name and was always smiling.

'Newsagent Ken' was keen to be involved and be photographed because he knows only too well that there is a particular shortage of organ donors, as well as blood and bone marrow donors among the Asian population and this can lead to very long waiting times for people of Asian ethnicity. Ken and his family gave the greatest gift that anyone can ever give - life to others. It was an honour to hear his story and to photograph him.

Go Justine!!

If you have been following this blog from the beginning, or know the inspiration behind my work, you will know that I was hugely inspired by an installation of work by Tim Wainwright and John Wynne, a photographer and sound artist, who worked as artists in residence among the transplant patients at Harefiled Hospital for a year. You can see more about this work on their website here I came across their exhibition through a postcard with the image below on the front. I still have this card displayed above my desk. These legs belong to Justine. The legs above are also hers, three years later and after a double lung transplant saved her life. With Jusine's legs hanging on my wall, it was lovely to be able to meet the rest of her at last. She is an amazing wonder woman and a fantastic inspiration to all those out there waiting for transplants. Justine was so ill that she had 15 lung collapses and onse spent 4 weeks on life support and had to re-learn how to walk with a zima-frame. Now she is in serious training for her third British Transplant Games with high hopes of qualifying for the European and Worlds.

Above image taken from 'Transplant' http://http//www.thetransplantlog.com/

Justine had the rare lung condition lymphangioleiomomatosis - LAM for short. She was on oxygen 24 hours a day and was dependent on a wheelchair. You can read more about her on her blog here and can even watch a very moving video on You-tube here

Justine practising digging to pick up speed coming off the corners on the track

I passed all the building works for the 2012 Olympics in Stratford on my way to meet and photograph Justine in training at The Chelmsford Sports and Athletics Centre. Huge thanks are owed to them for letting me follow her around for a morning and snap away. Justine is every bit as commited to her training as those hoping to appear in the stadium being built down the road. She runs, long jumps, plays badminton, has gym sessions and works with a personal trainer. The transplant games are much more than a nice excuse to meet fellow transplantees, although that is an important element of them. There are athletes all over the country traing hard to win medals and opportunities to represent the UK at European and World level.

Justine working hard in the gym

I had a fantastic morning with Justine and, again, finished with a lovely lunch in a pub. I could really get used to this and have made yet another new friend who I hope to spend more time with. I will get an opportunity in a few weeks as we are also going to the transplant games. William is making his debut in the 25 metre 'run', ball throw and obstacle course. For him, it is all about fun and for us all to meet other families, many of whom we have already 'met' on facebook and other forums. I am looking forward to being able to cheer Justine on in her many events and to take some more photographs of her, hopefully on her way to winning medals. I am also looking forward to that drink in the bar we promised each other. Justine really is a total inspiration and a fantastic example of the difference a transplant can make. I really hope her dreams come true. I can't think of anyone who deserves it better and few things would make me more happy than being at the side of the track in August, watching her sprint towards that place in the World Transplant Games. Go Justine!!!

Ladies who lunch in botanical gardens

This is the lovely Audrey. I had a wonderful morning with her on Tuesday, followed by a tasty sandwich and much needed cold lemonade - thanks Audrey! We really were 'ladies who lunch'. After so long stuck in hospitals with William over the past years, days like this are days that I haven't had the opportunity to enjoy for a long time and days that I will treasure as I look back over our early days enjoying life after transplant. It was a beautiful day so we decided to saunter around Cambridge Botanical Gardens. We wandered and nattered while I kept a look out for interesting locations. My favourite shot, and one I am holding back for the exhibition, was shot against something that is not immediately obvious as the choice shot in a botanical gardens bu was something I stumbled across and wanted to include in a photograph and I think it works well.

Audrey has cystic fibrosis, CF and her lungs are behaving themselves very well for her age. However, her liver was struggling a bit more with the disease and, after being diagnoses with 'CF related liver disease', Audrey was given a handful of extra pills to take and her liver was scanned as part of her annual review. It was during one of these routine scans that doctors discovered some worrying growths that turned out to be liver cancer. This is a difficult diagnosis for anyone to cope with but was further complicated by the fact that Audrey had just discovered she was three months pregnant. Audrey knew she could well be facing death and even planned her funeral. However, thanks to an experimental chemotherapy and the kindness of a family who donated their loved one's liver, enabling Audrey's diseased liver to be replaced, she is still her, 6 years on and is the very proud Mum of a gorgeous little boy. Audrey is an advocate for Live Life Then Give Life and more of her story can be read on their website here

It is great to meet so many inspiring people during these photo shoots. We certainly mixed the task of getting some great images with a most enjoyable time with a new friend. I am making lots of new friends as this project progresses.

Milk Shake and Cupcakes

Freya and Abby

Yesterday, I had a photo shoot which was a lot of fun and enjoyed spending time with two beautiful and special young girls. We went to London's East End to take some young and streetwise images. We even managed to incorporate some well deserved treats as we passed and American Diner with some fantastic milkshakes and cup cakes. Take a look at the gallery for some more images.

Freya and Abby are very best friends. They have lots in common, including first hand experience of donation and transplants. Abby is little sister to Emily who has already been featured in the project and is the subject of the blog here (as is Abby). Abby watched her sister become more and more sick and weak and then witnessed her bounce back to life after her double lung transplant. She talked a lot about her memories and feelings about Emily's illness and transplant as we were wondering around East London.

I was very interested to hear Abby's experiences as I am only too aware how tough things have been for Hope and Ellie at times through William's many months of illness and his transplant journey. Siblings often get pushed to one side when energy and worry needs to be focused on the sick child. There is always a feeling that there will always be time afterwards to catch up with the other children and make it up to them. One of the hardest things for me to accept our lives are settling after William's transplant is that I missed some precious time in Hope and Ellie's lives that can not be revisited of clawed back. Ellie is still only 9 and young enough for me to do the childhood activities we have missed. Hope though is 13 on Sunday. She was off catching up with her friends within the first hour of us all being back together and missed William's first outing, when his isolation period have finished, because she had arranged a revision session. She has matured into a teenage and I missed the close of her early childhood. It is one of my biggest regrets in all of this.

Hope is very mature and becoming quite the young lady. I wonder how she would cope if she were ever put into the same position as Freya was when she was 13. Freya's Mum became ill suddenly and was given just a few hours to live. Freya was her next of kin. During those final days, she was asked if she had considered organ donation. That is a huge question to ask anyone but for a 13 year old to have to make such a decision about her own Mother is just incomprehensible. Freya decided to donate tissue and bone and 14 people had their lives saved of transformed as a result. Her story is one of the bravest I have ever read and will always stay with me.

Freya urges people to think and talk about organ donation before the unthinkable happens so it is not all such a shock. Hope and I had a conversation about it today as she was looking though the photos in the gallery. Hope is registered to donate any part of her body but I now know that she wants to donate anything except her eyes. She knows I want any part of my body to be used for transplant if I were to die. I am a single parent to my girls and Hope is my eldest so I guess, technically, she could be asked the same question were anything to happen to me. Freya's presence among the images is a very powerful one and reflects her bravery. I hope it spurs other families to have the conversation Hope and I had today. Hope's friends have been having similar conversations since she has been talking about the project and the people I have been meeting.

Hope is lucky to have some amazing friends. They shopped for her dress for her confirmation on her birthday and are coming round to get her ready. They have stood by her through William's journey just as Abby and Freya have supported each other. There is always a lot of laughter in the house when her friends are here, That combination of mutual support and sharing fun together is central to Abby and Freya's special bond and I hope that is portrayed in the images.

There is something for me to take with me from both Abby and Freya's stories. I do my best to make things as easy as I can for Hope and Ellie and I hope they end up as happy and as lovely as Abby in their early teens. Her family is a huge inspiration to me. Freya's story, as all the stories included in the project, reminds me to make the most of every second and never take each other for granted.

Park Life!

Nelly enjoying her new found energy on the swings

Marcia at the end of a five mile walk and looking fantastic

Rahul has received two kidney transplants, the second from his brother

The weather has been glorious over the last few days and I have been able to enjoy it while working on the Gifts of Life Project. On Sunday, I went along to a sponsored walk in aid of a holiday fund enabling patients to continue with dialysis in a specially adapted and staffed holiday home. I have already introduced some of the people I met who are waiting for new kidneys. Rahul and Marcia have already received their gifts and were enjoying their new gifts of life to the full. Rahul has received two transplants. The most recent was donated by his brother who now lives in Singapore. He was very pleased to tell me all the things he, his brother and brother's family have achieved in life since then. Marcia is a beautiful and elegant lady. I have a lovely portrait of her which will be revealed when the exhibition opens. Her kidneys failed when a sudden immunological illness attacked them. She received an urgent transplant very quickly.

I enjoyed the sun in the park again on Tuesday when I went to meet Nelly. Nelly is a Live Life Then Give Life advocate and you can read more about her story here - although she is no longer waiting for her new kidney as she received it in January this year. The first thing that struck me about Nelly, and that I got to discover more and more through the day, was that she is full of fun and very playful. She kept asking me for jokes (my knowledge of which is pityful and I really must learn some new ones as they were useful in getting smiles and laughs). I was not surprised when she said that she really wanted to take the photos in her favourite park where she likes to play on the swings. There are more images of Nelly in the project gallery here Thanks to her Dad arriving home early, it was possible for us to get there. Nelly uses a wheelchair because of physical disabilities caused by her kidney disease. She has been able to walk short distances without her crutch since her transplant. It was lovely spending time with Nelly. She has had some ups and downs since her transplant. A few weeks ago I asked people to tell me their life story in 6 words to collate as an accompanyment to the images in the exhibition and photo book. Nelly told me hers on Tuesday. Life's a trampoline: Up and down. That sums up perfectly how it has been for Nelly, and reflects her playful personality too. Let's hope there are a long stream of ups from now on.

Four Lives in Hold

Victoria watching the world through her bedroom window

Victoria inhales life saving drugs through her nebuliser several times a day

David had his first kidney transplant in 1976. He is now awaiting his fourth new kidney

Trevor enjoying a picnic after a sponsored walk to raise money for a holiday home to enable people to go on holidays on dialysis

Ranjit has been waiting for a new kidney for a year now

Today, I travelled across to the North of London to see Victoria. Victoria has cystic fibrosis and, following a sudden and frightnening decline in her condition, has been waiting for a double lung transplant for two years. It was clear how laboured her breathing has become and it is now so exhausting for Victoria simply to stay alive that she is unable to even walk around her house with ease and spends most of her time resting on her bed. She is longing to get her call and her life back. She studies with the Open University in readiness to fulfill her career dreams when she has her new lungs and can't wait to be able to go and see the musicals that she once enjoyed so much. I found Victoria to be a lively and bubbly girl and could see how depressing it can be to mainly house bound and confined to a wheelchair when venturing out. It was agonising waiting the three months we did for William's small bowel transplant. Victoria has waited for over two years and Jess for four fo new lungs. I just can not imagine how it would be to have our life on hold and wait so desperately for that call for such a long time.

On Sunday, I met three men who know just too well how that feels. I was invited to meet walkers on a sponsored walk in Richmond Park in aid of The Charing Cross Holiday Dialysis Trust. The trust owns a large house and garden on the south coast in Emsworth,Hampshire. enabling kidney patients and their family and friends, to have a holiday and continue their dialysis in a purpose built unit by a renal trained nurse. It is a fantastic cause and I know how important it is to have a break from the stress of life dominated by medical procedures and treatment. I am so enjoying this summer, free of TPN and constantly living in hospital and being able to spend days out with the children. For many people with kidney disease, life is dominated by spending at least three days out of every week in hospital on dialysis. The waiting time for a new kidney can be many years. Richard has been waiting for two years, David has spent too many years of his life on waiting lists for his three kidney transplants and is now waiting for his fourth. Rahul has been waiting for a year. All this time spent with a life on hold, waiting for that call to enable it to be lived to the full again.