BBC Somerset radio interview – 5th July 2014

If you read my last blog post you may remember me telling you that I am going to be featured on Charlie Taylor’s Saturday morning BBC Somerset radio show every two months or so. I will be going on there to talk about what life is like for someone living with PSC and waiting on the transplant list. I want to raise awareness of both subjects and hopefully encourage people to talk more openly about organ donation as well as hopefully getting people to think about signing up to be an organ donor.
I really believe that the main reason for the shortage of organ donors in the UK is down to lack of knowledge. Too many people are misinformed or just don’t know the truths around organ donation so they don’t realise the impact that it has on so many lives. Not only the lives of people waiting on the list or people who have received transplants but also their family and friends too.
Ask yourself these questions: if you needed an organ to survive would you take one? If someone you loved needed an organ would you want someone to help them? If you answer yes to either of those questions then you should be an organ donor, don’t wait around for everybody else to make a difference, YOU can make a difference.
If you don’t know the facts then go online and find out. You’re not too old or too unhealthy to be a donor. I’m in very poor health and one day I will (hopefully) be a transplant recipient but I am an organ donor. There are many ways you can help someone ater you’ve gone, just because some parts of you may not be healthy there may be many other parts that might be and that could give someone else a new lease of life.

On Saturday morning I did my second interview on BBC Somerset, this interview was the start of the two monthly updates I’m going to be doing on there.  If you missed the interview and want to listen I have uploaded it to Youtube so you can listen.
https://www.youtube.com/watch?v=M1wUS_w6V5c&feature=youtube_gdata

Please make a difference during Transplant week this week. Go to the website to find out how you can get involved –
www.transplantweek.co.uk
Register as an organ donor at –
https://www.organdonation.nhs.uk/
Let your family know about your decision #spellitout

If you’re still not sure about whether to become an organ donor or not then watch this video…
https://www.youtube.com/watch?v=5eDRwlAit14&feature=youtu.be
Thanks for reading x

donor

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5 thoughts on “BBC Somerset radio interview – 5th July 2014

  1. I just read your post to Absolutely Lucy on her organ donor post which she also placed on Facebook. You are an amazing young woman and I truly pray and hope your transplant happens.
    Yes, I registered years ago and just retired.
    I remember my kidneys started to act up and my daughter with two children at the time all of a sudden told me she would give me one of hers, that was a bolt out of the sky I had not expected.
    Thankfully my issue was caught at an early time so meds are working

    Again ,, all the best and we will keep on telling all to register / Rob

  2. Hello,

    I am sorry to hear about your condition. I to have been diagnosed with PSC and i should consider myself lucky that i am the same age as yourself 25 and have just recently diagnosed so i would hope like you did i have a few dent years left. I was diagnosed with Ulcerative Colitis at the start of 2010. However it wasn’t till 6 months ago i was diagnosed with PSC. I had 2 years here in the NE of England where i was really tired like yourself and said i need to see a specialist here but yet my GP was convinced it was just because of my colitis and did not need monitoring and as I’m sure you are aware 70% of pacers have IBD. Finally i got one had an ERCP and they diagnosed me. I must say that i feared the worst case scenario but you have upped my spirits reading this blog and it also makes me feel that I’m not alone and there are others who have gone through this disease yet are still managing to have the time and energy to get out write blogs etc living a life. I cannot imagine what it must be like for you but we are not alone out there and we will fight this and one day we will find a cure for it. I have also mentioned about organ donations to many friends and family yet they do not understand why they need to give their organs. They say to me that i am fine and it is so frustrating because we look fine one day then a few years into the future its a different story. They have said you have hardly drank and never smoked stayed fit how can there be anything wrong with your liver and i say to them it isn’t the liver its the bile ducts that affects the liver and they just look at me with a blank face. What they don’t realise is for people like ourselves liver disease can be caused without touching a drop of alcohol and it is this perception we need to change if we are to get more people donating organs. I feel you should be at the top of the list your young and have your whole life ahead of you and this disease is not your fault like some others you deserve the chance to live a full life as do all PSCers it is not their fault they have this condition and you should have had the phone call 364 days ago. There is very little support for us yet there is help for self inflicted liver disease. That is fine they need the help as we do but i also think people like us need people who understand the disease been there themselves and offer support. I hope that very very soon you find a donor and you get that second chance you deserve. I would like it very much if you could stay in contact with me via email if you would like to as there is a lot of things i would like to ask you and also be here for support. Although i am not at your stage yet i understand what it must be like to not be understood and i will understand where you come from.

    Keep well and stay positive it will happen

    my email is johnhutton180@yahoo.co.uk

    John

    1. Hi John, I’m so glad you found my blog and have found some comfort in knowing that even when psc patients are at my stage waiting for a transplant it does not mean that life is over. I actually feel incredibly lucky because I am on my way to getting my life back and hopefully feeling well again, never fear the worst. I wont lie to you, it’s extremely tough and feeling so unwell all the time is no fun at all, as you can imagine but when you’re on the transplant list you can see the light at the end of the tunnel.
      You are definitely not alone, there is so much support out there! Have you found the PSC Support website or their group on facebook? Their help has been vital to me and having the facebook group to talk to other pscers at all different stages of the disease is brilliant! It makes you realise how it affects each person so differently. You can talk to people who have had PSC for years and years and still don’t have many symptoms and then there are people like me who are at the end stage with lots of symptoms…its really good to get advice and share stories with everyone, it definitely will make you realise that you’re not alone.
      Thank you for your kind wishes 🙂 I hope you’re well and of course feel free to get in contact anytime you want.

      Best wishes
      Maxine

  3. Hi Maxine,

    I had PSC which led to a liver transplant 18 months ago. All well now and life post op is great. I am thinking of you and recalling the itching. I remember pre op when the man in the bed next to me was post transplant and thinking how lucky he was. All I can say is keep thinking positive, try to exercise as much as you can (this will help with your recovery) and I wish you get that call soon.
    Mike

    1. Thank you for your comment Mike, its always great to hear from post transplant patients and I am so glad you’re doing well and life is great for you 🙂
      Thanks for your kind wishes
      Maxine

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