At the age of 18 I became the youngest person in the UK to have a pancreas transplant and it can be really hard to explain to someone who hasn’t had any experience with organ transplants what it’s truly like.
I have a rare and complex form of Brittle Diabetes, a variation of type one diabetes that can be extremely difficult to control and I’ve since been diagnosed with numerous other conditions.
It is right to say people can live a full, healthy life following a transplant, and I was ecstatic when the phone rang and I was told a new pancreas had been found for me.
However, there is a common misconception that once someone has had a transplant, they are cured for life.
This isn’t the case. Transplants are life-saving but they are a treatment rather than a cure and transplanted organs do not last forever – mine lasted just three and a half years.
Without a functioning pancreas, there isn’t a day where I don’t experience multiple symptoms, be that seizures, spasms, numbness, falls, sickness, dizziness or fatigue. I am mostly dependent on my wheelchair as I am unable to walk any kind of distance and fall over frequently.
Even if a transplant is successful, there are still the regular hospital appointments, blood tests, biopsies and daily medications to consider, and the side effects of those medications. You can never miss a dose of those medications, and there is always a risk of organ rejection or infection.
Every healthy day with a working transplant is a blessing. Mine gave me the chance to go back to school and do my A Levels, start my degree in psychology (which I have recently completed) and so many opportunities I never dreamed would be possible.
Yet transplant patients have to live with the knowledge that they are on borrowed time and the only certainty for most is that they will be ill again in the future. Most go back to square one on the waiting list for another organ with all the fear that brings, although for some a second transplant isn’t an option.
There are currently more than 6,000 people waiting for an organ transplant in the UK, and due to a shortage in organ donors, someone on that list dies every day.
Being on the waiting list was an incredibly scary time for me. I’d jump every time the phone rang only for it to be just another spam call and there’s always that worry in the back of your mind that you won’t get the call in time.
In the last year, however, over 3,500 people received a life-saving or life-transforming transplant thanks to the generosity of over 1,400 people who became organ donors after their death.
I am forever grateful to my donor, and their family. There isn’t really a day that goes by I don’t think of them.
I wrote to my donor’s family after my transplant, and it was, without a doubt, the hardest thing I’ve ever written.
Even though my transplant only lasted a short time, it gave me the time for new technologies and treatments to become available. I try and hold on to this as I will most likely need another transplant in the future.
It has also introduced me to the British Transplant Games. This year will be the second year, having taken silver in the archery in the 2014 Games in Bolton. I’ll be competing in archery, table tennis and swimming, which is one of the few sports I can do without risk of injury. Being in the water makes me feel free.
Exercise is so important for transplant patients to stay healthy and well and it has helped me get through some of the most challenging times in my life. Obviously I would love to win a medal this year but I haven’t been able to train as often as I would have liked.
It’s a common issue for transplant patients as your health can go up and down even if your transplant is still functioning OK.
For me the Games are more than winning.
Firstly, they highlight the need for a conversation about organ donation. Regardless of whether the UK adopts an opt-in or an opt-out law, the final decision on organ donation is made by loved ones. Families are far more likely to support organ donation when they know that is what you wanted to do.
They also give me a chance to come together with people who truly understand me and know what’s like to live on both sides of the transplant fence – needing one and living with one, and the unique challenges that come from both.
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