Jenni Brooks 24th November 2018
An organ donation is a life-saving gift. It’s not only life-saving, in fact, but it can also save recipients from a life of restriction, exhaustion and pain. Before a transplant, many patients don’t even know what being healthy feels like — some have to commit to four days of dialysis a week, while others rely on wheelchairs and oxygen just to get to the shops.
Receiving an organ can give back what some people only dream of; a normal life. It can be hard to see it as anything but a miracle.
But that isn’t to say that it doesn’t come without its challenges, and it can sometimes mean swapping one set of problems with another.
More than 52,000 people living in the UK have had transplants that are still keeping them alive today, according to the NHS. That is 52,000 people who, only a few generations ago, would have died with their own failing organ.
Transplantation is mind-boggling medicine. It’s extraordinary to think that humans now have the power to recycle parts of themselves to give others a second chance, and it is slowly becoming more likely that almost everyone will eventually be a donor. This is thanks to new policies, like the opt-out system — a new approach which is slowly being introduced to the UK, in which everyone will automatically be an organ donor unless they have stated otherwise. But right now, is it enough?
Organ donation isn’t spoken about as often as it should be, and this could be because it reminds people of their own mortality. Organ donation expert, Greg Moorland from the University of Warwick says: “Some people find it difficult to think about death or dying, and therefore avoid thinking about the possibility of organ donation.”
However, he also thinks that some may not like the idea of their organs living on inside of other people. The whole concept can be quite uncomfortable for people to think about; your organs are what keep you alive, so it’s only natural to get possessive over them. Others may want to donate but forget to tell their loved ones their wishes. It is therefore enormously generous for donors and families to decide, during their own suffering, to put others first.
But it still isn’t enough. The number of deaths on the waiting list for transplants in the past year was 426, according to the NHS. That is 409 adults and 19 children who died waiting for their new life to begin.
Having said this, having an organ transplant is in no way a cure. A recipient will have to be careful, take a multitude of medication, and face being immunocompromised for the rest of their life. A transplant also doesn’t last forever. Transplanted organs last a good few years, but eventually they will stop working, which is usually caused by chronic rejection — the body’s natural response to something foreign.
Anti-rejection tablets weaken the body’s immune system, which can to some extent trick the body into not noticing that the donor organ is there. However, chronic rejection can’t always be prevented, as there is always a risk that the body will recognise it as being foreign.
Not all transplants have equal survival rates either, and different types of organs last longer than others. Kidney transplants usually last between 10 and 15 years, whereas only a third of lung transplant recipients survive 10 years. This is because different organs play different roles in the body. Lungs, for instance, are one of the only internal organs to actually interact with the outside world. We breathe in bacteria all the time, so it’s understandable that they’re complicated to transplant and susceptible to infections.
Problems can also arise depending on whether patients wait for so long that they deteriorate while on the transplant list. Amy Steeples has already received a lung transplant due to cystic fibrosis and is now awaiting a kidney transplant. She says: “When I was told I needed a new kidney it was a surprise, because I didn’t feel unwell at all.
I’ve now been waiting for over a year, and I’ve got progressively worse
“I’ve now been waiting for over a year, and I’ve got progressively worse. I get fatigued really easily and now have to use a wheelchair when going out for long distances. I’ve also lost a lot of weight and have to have overnight needs just to sustain me until I get my transplant.”
Waiting for an organ can be frustrating and time-consuming. Even if patients were relatively healthy when they were listed, sometimes patients wait for so long that by the time they are ready for surgery, they are too sick to have it.
Waiting can be especially devastating for children who are on the list. Organs that are small enough to function in a child are often from other children, and these organs are sparse. This is often because parents have to give their consent, which understandably is tremendously difficult for them to do. This can put patients in a catch-22 situation; the sicker they get and the longer they wait, the less likely a transplant will work, even if they would probably benefit from it the most.
Despite all the risks, most transplant recipients still think the surgery is worth having. Victoria Tremlett, who also had a lung transplant after being on the waiting list for four years, says: “My life before the transplant was dire. I was constantly exhausted, mainly bed bound, breathless and in pain. I could barely walk the 20 steps to the bathroom.”
Victoria still faces many of the challenges and complications that come with a transplant, such as kidney problems, infections and the risk of rejection. However, in spite of this, she still thinks that her second chance was a blessing, adding: “I’m still alive. I can see my nephews and niece grow up, sit in the sunshine, play with my dog and hug my family.”
I know how transformational it feels to go from being desperately ill to being the healthiest I’ve ever been in my whole life
Amy also adds: “My lung transplant has given me a new lease of life, and has given me so many new opportunities that were just not possible beforehand. I wouldn’t even be alive today without my donor. If I had to, I’d go through it again and again, because I know how transformational it feels to go from being desperately ill to being the healthiest I’ve ever been in my whole life. It really is the most amazing gift I’ve ever received.”
Transplantation isn’t as easy as society thinks. It isn’t as simple as just replacing failing organs with healthy ones and calling it a day. They don’t last forever, and there are so many complications that recipients face on a daily basis. Nevertheless, this should in no way deter people from getting their donor cards and from sharing their wishes with their loved ones. Life should be about quality, not quantity. Even if a recipient only survives for one year with their new organ, that’s one more year of living that they wouldn’t have had without it.
Jenni Brooks 24th November 2018