Last month (November) two friends signed up to be Organ Donors which is great news. Cystic Fibrosis sufferer on her long wait to receive a transplant GORDON BROWNS eyes filled with tears as he talked about his three-year-old sons battle with cystic fibrosis. When asked about Frasers illness, Brown replied: We sometimes ask, why us? But we try not to be bitter. Victoria knows how devastating the illness is. She has cystic fibrosis and her only hope of survival is a lung transplant. Victoria, 27, has just 20 per cent of her lung function and is waiting for a call from doctors to tell her they finally have the match shes been praying for. She hopes that by the time Fraser Brown grows up, scientists will have discovered a cure. Victoria said: Ive always lived life to the full. My message to Gordon would be, Dont treat Fraser any differently. Keep him active as that will keep him healthier. They say the cure is just around the corner. Were all hoping it is. Victoria has lived with the inherited disease, which attacks the lungs and digestive system, all her life. As it progressed, 5ft 5in Victorias weight plunged to six-and-a-half stone. In CF sufferers, the glands which produce mucus, saliva and intestinal fluids do not work properly, resulting in secretions which clog organs, making it difficult to breathe and digest food. Victoria is fed 1500 calories through a tube every night to help push her weight back up and she relies on oxygen from a cylinder 24/7. Since going on the transplant list in 2008 shes had six false alarms - each time enduring a blue light journey from her Glasgow home to the transplant centre in Newcastle before the donor lungs turned out not to be a good enough match. Through extracts from her diary, Victoria urges all Scots to carry a donor card. GOING ON THE TRANSPLANT LIST, SEPTEMBER 6, 2008 It was my best friend Jay who finally got through to me. Until then, Id always said I wouldnt have a transplant. Jay said to me, Do you want to die? I said, No, not really and she said Well, why are you being so stupid? It took me at least a year to get my head around it. Only 26 per cent of my lungs were working. To cheer me up I had an Im on the list party at my flat with all my friends. We had a 1980s theme. I wore a pink prom dress and blue tights. We had a chocolate fountain. It was a lot of fun. MARILYN MONROE AND THAT FIRST FALSE ALARM, OCTOBER 31, 2008 Theres a ringtone Im listening out for. Its Paint it Black by the Rolling Stones and only goes off if its the transplant team. My first call was at my birthday party six weeks after I went on the list. I was dressed as Marilyn Monroe, out on the town with friends and got a call three hours after I got home. I was told they had lungs but didnt know if the recipient would be well enough for the operation, so I was the back-up person. Another girl got the lungs. Shed had three false alarm calls so it was her time. DETERMINED THAT 2009 IS GOING TO BE MY YEAR DECEMBER 30, 2008 I got my second call today. It made me think 2009 was going to be the year my life could change. Its the closest Ive got to getting a transplant. I was in the anaesthetic room at Freeman hospital in Newcastle and they were about to put in the anaesthetic when surgeons discovered the lungs werent good enough. I was OK. HOPING IT WOULD BE THIRD TIME LUCKY MARCH 3, 2009 I volunteer with a musical theatre class and was helping out when I got the call. Ten minutes after I got to Newcastle about 9.30pm I was told that the lungs had gone to a patient in another transplant centre. FOUR, FIVE AND SIX My fourth call was on April 18 last year. I flew down to Newcastle by air ambulance but they found a lump in the donor lungs which they couldnt identify so the operation was cancelled again. I got my fifth call on August 18 but I wasnt well enough to have the operation. I had chest pains, my kidney function went down and I needed a transfusion. I was raging. It felt like I was living my life stuck in an episode from Holby City. My sixth call was two months ago. The lungs were from a girl who had been knocked down. At first, they didnt think the lungs were damaged but they were. When I got back I found out one of my friends with cystic fibrosis had died. I cried a river of tears then felt numb. SEVEN MY LUCKY NUMBER? When Im not well, sometimes I feel angry but its just the way it is. Ive had CF my whole life and was diagnosed when I was six months old. I dont so much feel why me? as why is it getting worse for me? I take 12 pills every morning. Sometimes I feel scared but I try not to think about it too much. I always wanted to be the person who went on the list and got the lungs after a first call. God, it seems, has other plans and wants me to wait it out. Maybe he thinks itll make me stronger or wiser. I just know that I have to wait it out a little longer and itll come. I refuse to let CF defeat me. Maybe God wants to give me more time so I fully appreciate the gift he is giving me, or maybe others just needed them more! Whichever it is, I know itll happen and hopefully 2010 will be my year. Join the NHS organ donor register by calling the organ donor line on 0845 6060 400
Posted on: Tue, 09 Dec 2014 17:07:17 +0000
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