Radio 5 Live Interview.

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 –
http://www.theguardian.com/society/2014/apr/03/heavy-drinkers-considered-nhs-liver-transplants

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!

imagesPPFHYK4U

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

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2 thoughts on “Radio 5 Live Interview.

  1. BRILLIANT effort for all of us PSCers Max – I’m really proud of you, thank you so much for fighting our corner on an aspect in the media I’ve regularly been frustrated that we perhaps all too often get either wrongly stereotyped or under-represented in. (You’re a natural on the radio too by the way!)

    Would you mind if I link to this page in my next blog post? You’ve started something really positive here and I’d really like to direct my readers to all your hard work, as well as open up the wider forum for discussion with them too – I’ll obviously write my own thoughts about it on my own page (however we seem to have a lot of common ground on this front already) and encourage them to post back to me and not you if they’re that way inclined, but I think it’s really important that I help your cause and get as many people as I can to think more broadly on the subject of transplants and organ donation.

    I hope this sounds ok/logical – I didn’t want to just link without asking, but it seems too good an opportunity to not get this out there further..

    Hope right now you’re feeling up to gearing yourself up for some chocolate egg fun soon at the very least! Keep going with all your hard work; I know how much harder work it must be with all that you’re going through, but just know you’re making a big difference out there to people like me 🙂

    Lots of love x

    1. Ahh Jess, I always love reading your comments! you are so kind and make me feel like writing this blog is worth the extra brain fog it provides me with!
      Of course you can share it on your blog, please feel free to do that whenever you want. It’s so important that we raise awareness whenever and wherever we can!

      I’ve just caught up on your last blog post and I can’t even begin to tell you how much I can relate to everything you said. Having to live with an illness like this doesn’t come with many good things but I truly believe that the way it makes me value the more simple things in life and how it has taught me to see the world in such a different way, not taking anything for granted is a wonderful thing and not many people are lucky enough to have such a view on life.
      I’m so sorry to hear you’ve had more complications and those pesky cholangitis attacks aren’t giving you a break! I can only imagine how fed up you must be form spending so much time in hospital. Its wonderful to see that you’re still staying positive tho and not letting it stop you (as much as you can) I hope you get some answers soon on what plan is going to be put into action, remember it’s important to let them know which way you would want it to go if you could choose. It’s obvious how much it’s affecting your life at the moment and that’s not something to be taken lightly.
      I hope you know you can talk to me whenever things feel like they might be getting a bit too much, in my opinion it’s always good to talk it out with someone who understands PSC and all that comes with it! If you want to email me any time my address is mcowlin@hotmail.co.uk
      I hope you’re feeling well at the moment 🙂
      Lots of love back to you x

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