‘I don’t have any time to waste’
Time has become a very precious thing for T Sandeman-Charles since she was diagnosed with two rare lung conditions just over a year ago.
She knows that without a lung transplant those diseases - one of which is so rare that she is only the eighth person worldwide to be diagnosed with it - will eventually claim her life.
She also knows that her chances of getting a transplant are slim - the demand for donor organs far outstrips the supply.
But more than that she knows that hers is not an isolated story: it is the story of thousands of people across the UK, where three people die every single day waiting for life-saving transplants that never arrive.
This statistic and the individual human tragedies behind it motivated T to do something truly inspirational.
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She quit her high-powered job as an executive with the Pampered Chef kitchen supplies company to start her own campaign aimed at getting 10,000 people to join the online NHS organ donor register. The NHS is trying to get people to do this rather than fill in organ donation cards, which can easily be lost or forgotten.
T called her campaign Save5 because that is how many lives can be saved or transformed by each organ donor.
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So far almost 1,000 people have signed up through her campaign, which is now what motivates her to get out of bed each morning.
“I don’t focus on the illnesses I have,” she says. “I focus on what I am doing and everyone who joins Save5. When someone tells me they have registered (to be a donor) that is like gaining a day of my own life. I know that is another five lives potentially saved or transformed. I don’t know what is going to happen to me, I can’t do anything about that. But I can do something about this.”
The idea for Save5 began to take shape in T’s mind as her own health failed and she underwent a lung biopsy to find out what was wrong. Around the same time her sister, Sue, became a living donor, giving a kidney to a close friend.
“Whilst she and I were recuperating we would phone each other regularly,” says T. “I was truly inspired by Sue – she had literally saved and transformed her friend’s life. I started to think, what can I do that will make a difference?”
A few months after the biopsy T got the news she had been dreading. Doctors told her she had two serious lung diseases: organising fibrosing pneumonia and idiopathic pleuroparenchymal fibroelastosis.
“The long and short of this is that my lungs are fibrosing, which means breathing is going to become more and more difficult and a lung transplant will be not only necessary – it will be my only option,” says T. “The amazing fact about the second disease is that it is so rare that I am the eighth person on record in the world to be diagnosed with this condition. That certainly puts a different slant on it all as there obviously is very little known about it. It makes the physical process of the lungs going in and out tougher and tougher. So with these diseases my lungs are being attacked in two ways.
“When I got this diagnosis I was shocked but I am someone who always tries to get a positive out of a negative because when you do you are a much happier person. I just thought, OK, I have got these diseases, let’s do something with it. I can’t do anything about it but what can I do that will do some good so it is worthwhile me having these diseases?”
Talking to her doctors T found out only about 28% of the population are registered online to be organ donors in the event of their death - yet 96% of people would take a donor organ if they needed one.
“Donor cards are not reliable,” she says. “So what the NHS is trying to do is to get people to register online.”
If people do this, says T, it avoids any ambiguity about their wishes in the event of their death. There are no decisions for their loved ones to make at what is a highly emotional and traumatic time.
“What an amazing legacy for someone to leave behind when an organ donor can save or transform so many lives,” says T. “On average one donor can save or transform five lives.
“I thought, that is something positive to keep your focus on rather than focusing on your own situation.
“It is my goal before I die to get 10,000 people registered online. That means we could save or transform 50,000 lives.
“It would be worth having these two diseases if I can do that - that is how I look at it.”
T can remember the exact moment she decided to set up Save5. She was in hospital having some treatment and thinking about all the other people in a similar position to her.
“I just thought, this can’t continue to happen to people. You know when the moment is right and that is when I made my decision. It was a pivotal moment. I had no doubt whatsoever.”
Since the Save5 campaign was set up almost exactly a year ago 960 people have registered through it - potentially saving or transforming 4,800 lives.
“We’ve still got another 9,040 to go - that’s what drives me forward,” says T.
To try and achieve her target T has embarked on a mission to talk to as many businesses and groups as she can to spread her message.
“The best way I find of signing people up is to get in front of them for just a few minutes and talk to them,” she says. “Three minutes is all I need. I ask people would they take a transplant if they needed one and would they hope there was an organ available.
“If you knew that three people die every single day just waiting for a transplant would you just hope that you, your mum or child were not one of those statistics?
“When you look at it like that, people sign up.
“I never thought it would be me in this position: no-one ever does.”
T herself is not yet on the transplant waiting list - her condition has not yet deteriorated enough to make that necessary.
“There are so few organs available and there are more people in immediate need than me. I can still dress myself and walk,” she says.
T hopes that another thing her campaign can help achieve is to end the taboo that surrounds talking about organ donation.
“All I want is for people to make an informed decision about whether or not they decide to register online,” she says.
“The subject is not talked about but for most people I am convinced that the failure to register is a time factor rather than a reluctance to confront the issue. We all lead busy lives and with the best will in the world it’s the sort of thing people often say they will do later and they just forget.
“The best way of getting people to sign up is being in front of them. The results are fantastic. The next way is that when someone joins, they tell someone else.”
T asks that when people register online they email her to let her know they have done so. She then sends them a Save5 badge and can add them to her figures.
The badges serve as a visual reminder to others and help to bring up the subject of organ donation in an informal, unforced way.
“The badge is vital and critical to the whole of Save5,” says T, who gave up her job soon after setting up the campaign.
“I just knew I couldn’t run the business and achieve the 10,000 figure so I made a decision and it was obviously going to be this one. As hard as it was giving up my business it is lives we are talking about saving here,” she says.
“I am not taking any money from Save5. People have been very generous and have done fundraising events to help me and made donations. It is heart warming and humbling. Whether it is �5 or �50 it is amazing that people have got behind me and helped me. I couldn’t do it alone.
“I have set myself the target of getting 10,000 people to register before I die, which hopefully won’t be as soon as next week. If it is, I’d better get a bit of a wiggle on! But seriously, I can’t waste time - I don’t know how things are going to go.
“I put myself out there as a public speaker to slimming groups, companies and anyone else who will listen. The impact in these meetings is vast. That is all I am asking companies and groups to do - let me in for three or four minutes.”
As for her own condition, T can notice a progression of the illnesses but she tries not to dwell on it.
“If I stop and think about what could happen I wouldn’t get out of bed,” she said. “Instead, when I wake up, I get out of bed and think, I am going to go and talk to 100 people. That fires me up no end.
“In truth I now know why I have these two diseases. It is because if I didn’t Save5 would never exist. I’ve come to terms with having the diseases now – no matter what the outcome is for me.
“My doctors have been brilliant to me and so has my husband and family. It is their support and love that drives me on as well.
“As for Save5, I am going to achieve my target. I can’t not.
“A transplant gives you your life back. Three families are going to be mourning today just because an organ wasn’t available, not because doctors couldn’t do anything. We’ve got the know-how, we just don’t have the one thing that we need and that is the organs.”
? To find out more about Save5 and how to join the organ donor register visit www.save5.org.uk. On the website’s homepage there is a link to the NHS donor register and instructions on how to inform T once you have registered, meaning she can send you a Save5 badge and add your name to Save5’s list of supporters.
Anyone who would like T to give a talk to their group, business or organisation can contact her through the website. She is willing to travel to talk to groups throughout the region.