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
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.