Medical Milestones: The gift of life

Great Ormond Street Hospital celebrated two historic anniversaries yesterday - its 100th lung transplant and 200th heart transplant. Five of its patients tell their extraordinary stories to Arifa Akbar
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Justine Walker, 14, lung transplant to combat cystic fibrosis, 2005

Justine Walker, 14, lung transplant to combat cystic fibrosis, 2005

Justine Walker, who was born with cystic fibrosis, could not take part in everyday activities after her lungs began deteriorating at the age of 12. She was almost constantly breathless, oxygen-dependent and in pain.

But in spring this year, her world was "turned around" by a lung transplant at Great Ormond Street Hospital, the 100th such operation conducted there.

Justine, now 14, from High Wycombe, Buckinghamshire, said she can distinctly remember the moment when she was able to breath freely with her "new lungs". "Life wasn't good before the transplant. I felt like a prisoner because I couldn't go out without my wheelchair, walk the dog or be with my friends.

"The day I walked out of the hospital, it was so different. Taking an intake of breath with my new lungs was the strangest thing. I had to go back inside because the air was too much. I was not used to so much air. My intake was only at 36 per cent before my operation."

She was originally on a waiting list for a transplant in 2003, but was taken off it due to problems with her kidneys. Then, last year, as her health began to fail once again, she re-joined the pool of children waiting for a donor.

She said: "I could never thank my donor family enough. My message to people is to please consider being an organ donor. There are lots of children like me who need a transplant.

"I am now beginning to feel the benefits of my new lungs and can take walks without becoming breathless and run around the garden. I can even manage to wash and dry my own hair. I no longer feel dependent on other people for everything I want to do. I now want to improve my horse riding."

Dylan Smirnov, 6, heart and lung transplant, 2004

Dylan Smirnov's only birthday wish when he turned six this year was "a new heart". He had been diagnosed with primary pulmonary hypertension in September 2004, after which his health started to deteriorate quickly. Only four days after his birthday wish, he received a heart and lung transplant, a month after being placed on the waiting list.

His mother, Michelle Taylor, 38, from Essex, said she was overjoyed by his transformation. The boy who was forced to breath using oxygen cylinders and unable to climb a flight of stairs without blacking out, had become robust and active.

"When we got the call, he sat up in bed and said 'yes' and was over the moon about it. We were relieved and petrified at the same time, and the day he had his transplant was the longest day of our lives.Since he has had it, he is able to swim in our paddling pool, run and kick a ball, walk in the forest, things he just couldn't dream of doing before," she said.

Dylan had initially been diagnosed with asthma but Ms Taylor knew something was seriously wrong when he kept collapsing and becoming breathless after running up stairs. "After he was diagnosed, things deteriorated quickly. Now it is so different and he has recovered so well," Ms Taylor said.

"He has to catch up on two years of childhood, everything he has missed since nursery. He is going to school for the first time in the autumn. We are so proud of him."

Michelle Pownall, 15, heart transplant, 2005

Michelle Pownall was diagnosed at the age of 15 with a heart virus and within a week was given a transplant, becoming the 200th heart transplant patient at Great Ormond Street Hospital.

Michelle's mother, Sandy Pownall, 41, said she was "numb" when her daughter was diagnosed with the heart condition. "We took her to the doctor on Friday thinking she just had a chest infection. The doctor thought it was probably pneumonia and sent her to the hospital in Nottingham.

"She didn't react to the treatment and that's when the doctors realised that it was a heart virus. I was absolutely numb when they told me. I kept crying but we all had to get on with it," Ms Pownall said.

In the following few days, Michelle underwent surgery even before her three siblings, including her twin, Nicola, who was on a holiday at Butlins, could see her.

Nicola said: "We went straight to intensive care to see her. She has made a very speedy recovery and I am very proud of her. She is the bravest girl I know."

Michelle said she feels liberated by the transplant. "I can do more than I could ever do. I can swim, I can walk, and do what my friends do."

Katrina Coward, 18, underwent two heart transplants in one day in 1988

Katrina Coward, right, became critically ill at the age of seven when she suddenly developed dilated cardiomyopathy which meant her heart and lungs became infected.

Ms Coward, now 18, from Dorset, who had the operation for a new heart in 1988, underwent two transplants in one day at Great Ormond Street Hospital after the first donated heart failed to start. Doctors broke the news to her parents who were desperately hoping that another donor would come forward for the transplant. Astonishingly, a second heart was found.

"The first donated heart did not start but they found me another heart two hours later, which is very lucky as donors do not come around that often. My mum and dad were so shocked when they were told about the first heart. They both thought 'what on earth happens now?' I was unconscious for seven days afterwards, which is unusual. The person in the next bed to me who had had a transplant was awake after three hours," she said.

Before the operation, she was so fragile that doctors from Great Ormond Street had to fly to Dorset to provide medical aid.

She said the medical team explained the procedure to her using a "doll with tubes" to illustrate how she would look after the transplant, to minimise the trauma for her.

"My mum also explained it to me because at that age, you know something is wrong with you but don't fully understand what a transplant is. She said they were going to get a new heart for me from a cupboard. After the operation, I was really really thin and weak and I had to go round the park in a wheelchair at first before I built the strength back in my muscles," she said.

About six months after the operation, Ms Coward's parents bought her a pony. She loved riding as well as playing tennis, and she was able to attend a full day of school, something she had not been able to do before the transplant.

Ms Coward, who is now studying to become a radiographer at Portsmouth University, said her experience inspired her choice of degree course and, that she would ideally like to work with in a children's hospital.

"It may seem ironic but I want to help children. I'm interested in it because of what I went through. And I still think of the family who lost a loved one and donated so I could live."

Tineke Blanchard, 32, experimental heart and lung transplant, 1988

Tineke Blanchard was born with two holes in her heart which brought on a lung condition called Eisenmenger Syndrome and, as a result, she spent most of her youth using oxygen and confined to a wheelchair.

At the age of 16, doctors told her she had six months to live and and, shortly afterwards, had a experimental heart and lung transplant, and was warned her chances of survival were not good.

Ms Blanchard, 32, from Cambridge, became the fourth patient to have the double transplant at Great Ormond Street and is now the oldest surving patient to undergo the procedure at the hospital.

It changed her life and she regularly rows as well as sails in her spare time, as well as working for the NHS as a radiology IT manager.

Ms Blanchard said she feels forever indebted to the person who donated her organs so she could stay alive. "It is amazing that it has now reached nearly 17 years. I often think of the woman who donated her hearts and lungs to me - and her family of course - and I am very grateful to them. If I live an honorable and useful life I feel I am paying them back for their gift," she said.

She recalls the overwhelming physical change she felt shortly after coming out of the operating theatre.

"Even from when you regain consciousness, there is a difference from the way you breathe and you feel your heart is different. You also have to go through an adjustment mentally. You realise you're not poorly anymore - it is the small victories that made me the happiest - the first time you cross the street and are not out of breath. I remember the first time I did a length in a swimming pool six months after the transplant. My sister took me and she said 'just see how far you go'. I went right to the end and wasn't even out of breath."

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