Organ Donation Awareness
Donation protected
**Story below**
In October 2016 I received the amazing gift of a living liver donation from my cousin Robert. Now that we have (mostly) recovered my family and I think it would only be right to try and repay the amazing care I received.
To do this we're raising money for:
-Kings Hospital London, to use on research and facilities
-RVH Liver support group, so they can continue to provide support to those in need
-Live life, Give life, to raise organ donation awareness
We are currently planning a series of events to raise funds and I will update this page after each of these to show our progress.
If you read my story below I'm sure you'd agree that these are causes worthy your donation.
Please consider signing up to be an organ doner here- https://www.organdonation.nhs.uk/register-to-donate/register-your-details/
My story-
When I was 14 I was diagnosed with Ulcerative Colitis. A long-term condition, thought to have been caused by a genetic immune system defect, which causes inflammation of the lining of my large intestine. Over my late teens my condition worsened. I had 3 major infections in my liver and I was diagnosed with Primary Sclerosing Cholangitis - an uncommon chronic liver disease which has no known cure or even specific treatment. These conditions are closely linked though PSC is very rare.
As my condition worsened my symptoms also did. My body constantly itched, I wrecked my skin through non-stop scratching. I was severely fatigued from a lack of sleep and was swollen all over, and often jaundiced. It was an extremely low point in my life.
I was placed on the transplant list in November 2015. My life was essentially on hold. I was too sick to continue my university studies or work. I faced the possibility of over two years on a waiting list in this deteriorating state before I might get a transplant. More worryingly there was a 20% chance that I would not make it!
During these days the support I received from my family, friends and my girlfriend kept me going. But the information, help and reassurance I received from the hospital and the Liver Support Group was vital. Google is not your friend when diagnosed with something like PSC and so it was comforting to be able to talk to people who knew the facts and who’d actually been through it.
Fortunately, a ‘living’ donor transplant was an option. With this procedure part of a donor’s liver is removed and transplanted into the recipient. During the subsequent two months or so, the remaining parts of the liver grow back to full size, providing normal liver function to both the donor and the recipient.
Of course having this as an option was all fine but finding someone who was the correct match and who would be willing to have part of their liver removed was another thing. My sister was not a match and my mum and dad had passed the qualification age. Thankfully, my cousin Robert volunteered to be tested and it turned out he was an exact match. With astonishing selflessness he agreed to undergo the surgery that would provide me the opportunity to have a future and life worth living. A huge gesture that I will forever be thankful for!
In October 2016, after different scans, tests and much contemplation, we both went under the knife at King’s College Hospital in London. At the age of 23, following a 14 hour operation, I become the first adult from Northern Ireland to receive a ‘Live’ liver transplant.
Over the next few weeks we both received the utmost dedication and care from the staff in the Todd Ward at Kings. I was up on my feet and out walking after only a week and was back home after 4 weeks. Over the next few months I have made incredible progress and today I fell well on my way to good health. The transformation is amazing and I look forward to living a normal life again.
While Robert’s recovery has not went as everyone would have wished, he has almost returned to his pre-op health. The magnitude of his gift to his cousin cannot be underestimated. I am still around today due to Robert’s kindness and bravery. Words cannot describe how grateful I and my family are to Robert, Sheila, their family along with the medical organisations who have given me my life back.
But not everyone is as fortunate as I am! At any given point there could be up to 600 people waiting for a liver transplant. Many of these people will be enduring the same excruciating symptoms, worry and stress that I did. Some will not make it! 3 people die in the UK every day waiting on an organ transplant list. I am especially determined to raise awareness of the importance of Organ Donation and to show the life-changing difference it can make to a person and their family.
Thank you for reading
In October 2016 I received the amazing gift of a living liver donation from my cousin Robert. Now that we have (mostly) recovered my family and I think it would only be right to try and repay the amazing care I received.
To do this we're raising money for:
-Kings Hospital London, to use on research and facilities
-RVH Liver support group, so they can continue to provide support to those in need
-Live life, Give life, to raise organ donation awareness
We are currently planning a series of events to raise funds and I will update this page after each of these to show our progress.
If you read my story below I'm sure you'd agree that these are causes worthy your donation.
Please consider signing up to be an organ doner here- https://www.organdonation.nhs.uk/register-to-donate/register-your-details/
My story-
When I was 14 I was diagnosed with Ulcerative Colitis. A long-term condition, thought to have been caused by a genetic immune system defect, which causes inflammation of the lining of my large intestine. Over my late teens my condition worsened. I had 3 major infections in my liver and I was diagnosed with Primary Sclerosing Cholangitis - an uncommon chronic liver disease which has no known cure or even specific treatment. These conditions are closely linked though PSC is very rare.
As my condition worsened my symptoms also did. My body constantly itched, I wrecked my skin through non-stop scratching. I was severely fatigued from a lack of sleep and was swollen all over, and often jaundiced. It was an extremely low point in my life.
I was placed on the transplant list in November 2015. My life was essentially on hold. I was too sick to continue my university studies or work. I faced the possibility of over two years on a waiting list in this deteriorating state before I might get a transplant. More worryingly there was a 20% chance that I would not make it!
During these days the support I received from my family, friends and my girlfriend kept me going. But the information, help and reassurance I received from the hospital and the Liver Support Group was vital. Google is not your friend when diagnosed with something like PSC and so it was comforting to be able to talk to people who knew the facts and who’d actually been through it.
Fortunately, a ‘living’ donor transplant was an option. With this procedure part of a donor’s liver is removed and transplanted into the recipient. During the subsequent two months or so, the remaining parts of the liver grow back to full size, providing normal liver function to both the donor and the recipient.
Of course having this as an option was all fine but finding someone who was the correct match and who would be willing to have part of their liver removed was another thing. My sister was not a match and my mum and dad had passed the qualification age. Thankfully, my cousin Robert volunteered to be tested and it turned out he was an exact match. With astonishing selflessness he agreed to undergo the surgery that would provide me the opportunity to have a future and life worth living. A huge gesture that I will forever be thankful for!
In October 2016, after different scans, tests and much contemplation, we both went under the knife at King’s College Hospital in London. At the age of 23, following a 14 hour operation, I become the first adult from Northern Ireland to receive a ‘Live’ liver transplant.
Over the next few weeks we both received the utmost dedication and care from the staff in the Todd Ward at Kings. I was up on my feet and out walking after only a week and was back home after 4 weeks. Over the next few months I have made incredible progress and today I fell well on my way to good health. The transformation is amazing and I look forward to living a normal life again.
While Robert’s recovery has not went as everyone would have wished, he has almost returned to his pre-op health. The magnitude of his gift to his cousin cannot be underestimated. I am still around today due to Robert’s kindness and bravery. Words cannot describe how grateful I and my family are to Robert, Sheila, their family along with the medical organisations who have given me my life back.
But not everyone is as fortunate as I am! At any given point there could be up to 600 people waiting for a liver transplant. Many of these people will be enduring the same excruciating symptoms, worry and stress that I did. Some will not make it! 3 people die in the UK every day waiting on an organ transplant list. I am especially determined to raise awareness of the importance of Organ Donation and to show the life-changing difference it can make to a person and their family.
Thank you for reading
Organizer
Aaron Smyth
Organizer
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