"It’s annoying when you have to wait for something, whether it’s your morning coffee, the bus or a parcel. Now imagine having to wait for something that your life depended on.... an organ.
This year’s National Transplant Week runs between 4th and 10th July and NHS Blood and Transplant (NHSBT) are calling on the UK public to reduce the waiting times for a transplant by Signing up to the NHS Organ Donor Register."
On Monday I posted a video from Victoria Tremlett who has been on the waiting list for a double lung transplant for 4 years now. Victoria, or Tor as she likes to be known, is one of the bravest young ladies I know and is tireless in her campaign to get people to sign up to become an organ donar and become aware of the importance that donars play.
Signing up only takes minutes and you will do so in the knowledge that you will be saving lives.
Tor suffers from Cystic Fibrosis and her story is one of the most inspiring I've heard.
What is Cystic Fibrosis?
•Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.
•Cystic Fibrosis affects over 9,000 people in the UK.
•Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.
•If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
•Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
•Each week, five babies are born with Cystic Fibrosis.
•Each week, two young lives are lost to Cystic Fibrosis.
•Only half of those living with Cystic Fibrosis are likely to live past their late 30s.
Even though her illness takes up all her energy on a daily basis, Tor kindly took a little time out to answer some questions for Access London so we can all understand a bit more of the importance of signing up to be a donar....AL: Can you tell us who you are and a bit about yourself?
VT: I'm Victoria Tremlett usually known as Tor, I'm 24 years old and suffer from the genetic condition Cystic Fibrosis. The disease has damaged my lungs to such an extent that I am in desperate need of a double lung transplant to save my life, without one I will die. For the last four years I have been waiting and hoping for that phone call that will not only save but completely transform my life. There are so many things I still want to do with my life but I am unable to now because my health is so poor, my mum has to do the most basic tasks for my such as washing and dressing and my lung function is now so poor I can barely leave my house. I live with the knoweldge that 50% of people waiting for a lung transplant do not get their transplant in time but I fight on because I'm not ready for life to be over yet. I absolutely adore musical theatre, plays and getting out and about in London and these are some of the things I miss most about my poor health. If I do get my transplant in time I would love to be a Westend actress one day.
AL: What is Cystic Fibrosis and how does it affect you?
VT: Cystic Fibrosis (CF) is the Uk's most common genetic condition. It's main symptom is the body producing thick, sticky mucus that clogs both the airways and digestive system. CF can also cause other problems in the body such as diabetes, liver disease, osteoporosis and arthritis to name a few. Every patient is different but most will end up needing a transplant at some stage in their life. CF has always been an ever present force in my life with regular hospital visits, daily regiemes of physio and endless tablets but I stayed relatively well throughout my childhood. In my teens the disease started to take a stronger hold and I was struggling with breathlessness much more. When I was 20 things came to a head when I collapsed on my way to work one day, I was rushed to hospital and placed on oxygen. I knew I wasn't going to bounce back from this setback, my body felt foreign to me. I was assessed for transplant and accepted onto the waiting list for lungs. Now my daily treatment regieme consumes most of my day, I take over 100 tablets a day, nebulisers, inhalers, a wheelchair to leave the house, oxygen 24/7, and place a naso-gastric tube every night to maintain my weight.
AL: This week is National Transplant Week 2011 in the UK - how important is this for those suffering with CF?
VT: As I mentioned before, transplant is a last chance option for most CF patients so organ donation is a very real issue to us. However anyone could potentially need a transplant one day, the fact is you are more likely to need an organ than to be able to donate one so the subject is relevant to everyone. No one knows what the future holds. If you needed an organ would you take one? If so then you should be willing to donate.
AL: What is the most important thing people can do this week to help you and others suffering with CF?
VT: The most important thing you can do is to sign up to the organ donor register and save lives like mine. One person can save up to 9 lives. It's so quick and easy to sign up, it takes less than 2 minutes. It's also really important to let your family know your wishes.
AL: For those who are already signed up as an organ donor, what else can they do to help?
VT: It would be great if people could pass on the links to my transplant appeal, I'm asking everyone to post it to their FB pages, send it in a tweet, write a blog or forward the links to their email contacts. By spreading the word you are literally saving lives, 3 people die each day waiting for an organ purely because not enough people are signed up to the donor register. Together we can change this statistic.
AL: If people are organising fundraising events and are looking for a charity to donate to, which is the best that helps support those suffering with CF?
VT: The Cystic Fibrosis Trust helps people with CF all over the UK and are working to find a cure for children born today with the disease.
AL: Any other messages or thoughts to readers of this interview?
VT: Thank you so much for your time and support. Transplant is quite literally a modern day miracle and by raising the profile of this issue we can transform lives.
If there's one thing you do today, please sign up to the organ donar register!
Thank you once again for taking the time to read this post everyone. This concludes Access London's posts on National Transplant Week.
COMING SOON: London River Cruise & The London Eye
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