The Gift of Life: Summiting Slieve Donard for Organ Donation
By Samuel McLoughlin – interviews jointly done alongside Mateus Keating
This year marked 30 years of the NHS organ donor registry. Since its formation, organ donation has accumulated in the UK with 1763 people having received a transplant since April of this year. However there are 7795 people still patiently waiting [1]. The 23rd to the 29th of September marked Organ Donation Week, a time of year to bring light to this discrepancy and promote organ donation. On the Friday of that week hundreds of people helped ‘Turn the Peaks Pink’, hiking the tallest mountains across the UK. Here in Northern Ireland, two of our writers had the opportunity to take part in the 2933 foot ascent of Slieve Donard, and to learn from and be inspired by all those who partook.
Undeterred by the miserable weather from the previous day, all sorts of people who’s lives had been affected by organ donation took a stand; from kidney to liver recipients, nurses to surgeons, friends and family – all stood at the base of the mountain.
Whilst journeying up the peak, we heard stories from people who’s lives were changed by organ donations. One lady, Emma, was diagnosed with kidney disease twenty years ago. Over the years her kidneys worsened until her only options were dialysis or a transplant. Fortunately, Emma’s husband was able to partake in the UK Living Kidney Sharing Scheme; a scheme founded in 2007 which allows incompatible donors to ‘swap’ kidneys. “And [she’s] had a life ever since”. While Emma was talking to us about this “gift of life” she said “it’s a wonderful thing to do, to leave a legacy to your family, you have given life to a number of people”. Saying a number of people is no understatement; donating your organs and tissue can save the lives of up to nine people awaiting a transplant [2].
Donating your organs can leave a great legacy behind you, yet we were also deeply touched by people continuing on the legacies of their loved ones. I was personally moved by Rachel’s story of her daughter Lucia. Lucia’s journey with organ donation began when she was only eight years old, having received her first liver transplant. Overall Lucia underwent four liver transplants before tragically passing away in 2020 at age twenty. During Lucia’s teenage years she created an amazing blog called Live Loudly Donate Proudly, where she frequently wrote about her experiences. Now her parents continue on her phenomenal work frequently posting on her blog to this day [3]. Lucia’s blog can be found below – we recommend to any reader to check it out!
Hearing stories like these truly illuminates the importance of registering to donate; a sentiment strongly felt by Noelle, a specialist nurse on the organ donation team in Northern Ireland. “We don’t talk about end of life care wishes and dying, which is something that we never really want to consider or think about… Let your family know and so whenever they are in that position, maybe having to make any decisions at the end of life, that they know and they can be comforted by knowing the decision of their loved one.”
In Northern Ireland the stance on organ donation has shifted significantly since the passing of Daithí’s Law last year [4]; marking fives years of then six year old Daithí Mac Gabhann awaiting a heart transplant. Daithí’s Law shifts organ donation from something you opt into, to something you opt out of. Meaning if you pass away without stating whether you wish to be an organ donor or not, consent will be presumed. However, it is crucial to note that this can be objected by family members, which is why it is paramount that you confirm your feelings with friends and family.
Currently in Northern Ireland 1% of people are opted out from the organ donor register, with more uncertain as to whether they will join the 55% already opted in [5]. This uncertainty can arise from many apprehensions that people may have involving organ donation, some of which we got to discuss with kidney surgeon James. Having performed hundreds of transplants, James wanted to clarify that “the organ donors are treated with enormous respect, we always have a minutes silence to honour the deceased when we are removing the organs”. He also addressed that “the retrieval team and the team that look after the organ donor are completely separate. Some people have this weird myth that if you are a registered donor that your team will give up on you earlier, that is complete nonsense.”
Those percentages suggest that 44% haven’t specified their wishes on the organ registry. ICU nurse Linda wished to say to all the students reading our paper “think about it again, just stop and think about it again. You’re young, you’re probably in the prime of your health and you never imagine you’ll need it. But every day I’m in work I spend my time looking after 0-18 year olds who are in need of organs… you just never know”. Linda herself, a strong advocate for being a living donor, altruistically donated her left kidney to a complete stranger in Scotland years prior; “[she] donated [her] kidney on a Monday, was out of hospital on a Wednesday and two weeks later [she] was climbing Slieve Donnard like we [were]”.
With the inspiration of all those people we trekked up the mountain and we trekked back down; blessed with the weather for the majority of the day (aside from a brief hail storm during our descent). After returning to the base of Slieve Donnard, Kay, who had received a stem cell transplant four years ago, made a poignant remark on the power of the climb.
“After my transplant my thing was; can I walk 100 yards, can I walk 200 yards, can I walk as far as the park, then to go from that to being able to come up this mountain, it just gives you a goal… I think [the climb] can inspire people when they are having their treatment; and kind of go ‘Well there is a hope for me. These people have been through what I’ve been through and now look at them; they’re out enjoying life’.”
I’d like to extend a special thanks to Catherine McKeown for making the climb up Slieve Donnard possible, to our mountain guide Alex for ensuring we reached the summit in one piece and most importantly to every single person who came and inspired us all with their strength.
Today there are 201 people in Northern Ireland on the transplant waiting list, with nine people passing away last year before they could receive theirs [6]. Now October, or as the orgamites would say Orgtober, is the month of organ donation education [7] and with that comes a responsibility to discuss these issues. We at the Gown implore you: Please take a moment to stop and think. Have that uncomfortable conversation with your friends and family. No one knows what tomorrow has in store for us. We should be grateful to have that gift of life every single day and to possibly pass on that gift to someone else.
Sources:
[1] NHS. 2023. “Statistics about Organ Donation.” NHS Organ Donation. https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/.
[2] Save9Lives. https://www.save9lives.com/nhs-facts.
[3] Live Loudly Donate Proudly – Open Conversations about Organ Donation. 2024. http://live-loudly-donate-proudly.org/.
[4] ‘Dáithí’s Law’ Comes into Effect in Northern Ireland. 2023. NHS Organ Donation. https://www.organdonation.nhs.uk/get-involved/news/d%C3%A1ith%C3%AD-s-law-comes-into-effect-in-northern-ireland/.
[5] Organ Donation and Transplantation Activity Data: NORTHERN IRELAND. 2024. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/33811/nhsbt-northern-ireland-summary-report-jun-24.pdf.
[6] The Facts – Northern Health and Social Care Trust. 2019. https://www.northerntrust.hscni.net/services/organ-tissue-donation/the-facts/.
[7] Introducing Orgtober! – Live Life Give Life. 2023. https://livelifegivelife.org.uk/our-blog/introducing-orgtober/.
