Last Friday I was asked to do an interview on BBC Radio 5 Live to discuss my views on the new liver transplant study that is commencing in the UK later this month. In this study, 20 patients with severe alcoholic hepatitis who are aged between 20 and 40 years old will be evaluated and if accepted, placed on the local, routine liver transplant list. You can read more about this study in the article that was published in The Guardian last week –
Sir Ian Gilmore, who is a professor of hepatology and Bertie Leigh, the chairman of NCEPOD which is a charity that aims to improve patient care, were also on air discussing their views on the new study. As time was short and there was so much to be covered (not mentioning the fact it was live and I was really nervous), I wasn’t able to talk about my views in as much depth as I would have liked.
You can listen to the interview here – https://www.youtube.com/watch?v=XuL0lH7gAcs&feature=youtu.be
As I said in the interview, when you’re living with a liver condition that is not preventable and has nothing to do with your life style choices and you read headlines like this, of course there is part of you that is angry. There is a selfish little part of me that is really frustrated by the fact that someone who has caused damage to their liver that is now beyond repair, could get a life saving transplant before someone who is desperately ill through no fault of their own. That selfish part of me is saying ‘that’s not fair, I never asked for any of this, they’ve put themselves in this position, the damage has come from their own actions.’ But I am fully aware (even the selfish part of me) that it isn’t as simple as that. Alcoholism is an illness in itself, people don’t choose to be alcoholics. I have met a lot of people throughout the years of my PSC diagnosis, many of them with alcohol problems. These meetings usually happen in hospitals and the people talking to me are not happy people. They are people with terrible stories, huge regret and often a lot of guilt. I have also met people who don’t have the terrible, sad stories, people who have been leading perfectly happy lives with no idea of the damage they were doing to themselves just by having ‘a few drinks most nights’.
Yes, it is frustrating that these groups of patients wouldn’t need transplants if they hadn’t abused their health but the fact is that these patient groups DO exist. The only way they are going to survive is if they have liver transplants. Who is anyone to judge who gets a second chance and who doesn’t. As Professor James Neuberger said in his Guardian interview they are ‘transplanting humans not angels’.
This same study has been carried out in Germany and North America and it revealed that after transplantation, with the help and support of a multi-disciplinary team only 3 out of the 20 patients reverted back to alcohol. The gift of life is the best gift that anyone could receive. Everyone I’ve spoken to that has had a transplant of any kind says that it has completely changed their life. No matter what the reason was for them needing a transplant, recipients are completely humbled by the second chance they have been given. They often see things in a completely different way than they did before, they value and respect their new life and feel that they owe it to their donor to not take anything for granted and make the most of each and every day.
Since this article was released there has been a concern that people may be put off joining the organ donor register if this new policy comes into place. I can see how people may feel this way at first but the fact is you don’t get to choose who your organs go to. Yes, your liver could be given to someone who is in need of a transplant due to their excessive drinking but it could also go to a 30 year old mother who is desperately ill through no fault of her own and has weeks left to live, without a transplant she will not get to see her children grow up. Part of your liver could go to a child with a genetic liver condition, it could save their life. There are thousands of people waiting for transplants for many different reasons, 3 of those people will die every day and with the shortage of organ donors in this country, this isn’t going to change any time soon. People will keep being added to the waiting list, one day it might be you or one of your loved ones. You don’t get to choose who’s life you could save but you do get to choose if you save anyone’s life at all. Click the picture below if you want to sign the organ donor register!
In the future I hope that less and less people will need transplants because of diseases that could have been prevented. There should be much more focus on prevention through harsher laws, more awareness through advertising and making alcohol and junk food less affordable.
I’d love to hear everyone’s views and thoughts on this subject so please let me know.
Thanks for reading 🙂 x