Why is organ donation so important to PSC patients?


This week has been the first ever PSC Awareness week and it is truly amazing to see how many people from all over the world have shared their stories and inspiring photographs of themselves doing great things to show the world that ‘they have PSC but PSC doesn’t have them!’ People coming together to raise awareness of this awful disease in hope that we will one day find a cure, so that we won’t lose any more friends, so that future PSCers don’t have to suffer like so many already have and so that we can finally say we have beat this thing for good! Research is happening, trails are underway and we are more hopeful than ever that a cure will be found soon. We have reached this exciting stage thanks largely in part to the worlwide PSC community and the way we have all been pushing for this for so long and that makes me so proud. Although we are hopeful and closer than ever to finding a cure, we know we are still a long way off and there is still much work to be done but we also know that we will never give up the fight!

For those of you who have been following my blog since the beginning or for the past few months you will know how important organ donation is to me and the massive difference it has made to my life, a donor and their family gave me my life back. 
PSC is the reason I needed a liver transplant, the reason the liver I was born with could no longer function properly and the reason my life was put on hold for so long whilst I waited for a suitable liver to be found for me. The progression of PSC is highly variable between patients and the outcome and severity of the disease cannot be predicted in anyone who is diagnosed with it. That is one of the hardest things to deal with, not knowing what’s going to happen but knowing how bad it could get. Some people will live with PSC their whole lives with manageable symptoms and without many serious issues, others will suffer with more symptoms and will need more help to manage their condition. Some people will be debilitated by PSC and it’s symptoms, their whole lives will be turned upside down by it when the disease progresses to an ‘end stage’ and the liver is no longer able to function properly. Sometimes this happens gradually and sometimes it happens rapidly, out of no where. It is scary and devastating either way and at this stage patients are usually assessed for a liver transplant and a that transplant becomes our only hope.
It seems extreme saying that the only treatment for PSC currently is a liver transplant but that is the reality. Something so extreme and so tough on the human body is the only treatment available, it’s not even a cure because in around 30% of post-transplant PSC patients the PSC comes back. It’s an extreme, risky and really scary treatment but it has hugely successful outcomes in most cases and like I said, for those at an end stage, for people like me, a transplant becomes our only hope, it becomes something we long for and it becomes our only choice. THAT is why organ donation is so important to PSC patients because for many of us our lives end up depending on it. So when you see me bombarding your news feed with organ donation stuff, when you hear me banging on about the importance of it, doing whatever I can to get people to sign up please try and put yourself in mine and many others position. Imagine yourself in our shoes, where your life literally depends on people supporting organ donation. Would you do something positive to change the huge lack of donors if you were in our situation? Would you want everyone to realise the importance of it?

One day PSC patients will have better options for treatments, one day we will have that vital cure but until then organ donation remains crucial to PSC patients, for some of us it becomes the only chance we have of living.
Without organ donors many of us PSC patients would not be here today still fighting for our cause, still trying to make a positive difference in this world, still able to live.

Thank you donors.



4 thoughts on “Why is organ donation so important to PSC patients?

  1. A great post Maxine and so very true. Without my liver transplant nearly 12 years ago I wouldn’t be here today.

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