The taboo of organ donation
A kidney transplantee's trip to parliament.
It was the kind of event that moved you to tears but it felt like the wrong setting for it.
A heady mix of politicians, high-level NHS clinicians, charity campaigners and 20 patients who have experienced kidney failure, from all walks of life. All gathered in the Houses of Commons on 13th September 2023.
On arrival, I picked up a splendid selection of Kidney Care UK Merch, skulked around a bit, scoffed a couple of finger sandwiches then got this photo taken. I felt awkward about holding the card as I can’t donate my kidneys, as I have had 2 kidney transplants. It’s funny the things we worry about in our heads.
The event had some very clear Key Messages (Taken directly from the manifesto):
Firstly - to demonstrate the life-changing impact the gift of a kidney transplant can have, and to encourage everyone in attendance to come together, unite and commit to taking action to help reduce the number of people waiting for a kidney transplant in the UK. The transplant waiting list is at a nine-year high - this must be reduced. Public education, technology and NHS support will help.
Secondly - to encourage everyone who attends to think about their organ donation decision, to record this decision on the organ donor register and encourage constituents to do the same. and to commit to talking about this with their family.
Finally - to talk about the impact that waiting for a transplant can have but also the need for support after a transplant, to signpost or talk about the services that Kidney Care UK offers; patient support and advocacy, free counselling and financial support.
The charming Labour MP Dan Jarvis MBE was hosting the event (he looks a little bit like Ralph Fiennes). A Very approachable, friendly, well-spoken man. I gave him a copy of my book, and he looked taken aback at first but did say thank you and accepted the gift.
He went on to give an opening speech about how he led the bill to change organ donation from an opt-in to an opt-out system. (I’ll share a link about this at the end if you’re interested in how it works).
The second speech came from a guy who works at Deutsche Bank called Jay. Very smartly dressed, bald head, and a coiffed beard.
He shared his story: It was like any other afternoon for Jay, he was upstairs neatly folding the washing and putting it away. Having three kids, those who know, it’s not a small job. The kids were downstairs, the older twin girls were eating a yoghurt and watching Peppa Pig on the TV. The younger boy was toddling around the living room, exploring everything around him.
The little boy, Ari, managed to get hold of the cord that was attached to the blind and put it around his neck. The older girls didn’t understand what was happening and tragically, he suffocated and was unconscious. This took all of 8 minutes. The ambulance came rapidly, but the swelling in the boy’s brain was too great and they had to say goodbye to him.
After such tragic news, Jay and his wife were asked if they’d be open to donating Ari’s organs. They both said yes immediately, as they knew that someone else would receive the gift of life from their son’s death.
A little girl across the other side of the country, who desperately needed a heart within days to survive received Jay’s son’s heart and saved her life.
After the little girl recovered, she drew a picture of herself to give as a gift. The picture of her had a huge heart in the middle and it said: “Thank you for my heart”.
There wasn’t a dry eye in the room.
The second story was about Radio 1Xtra’s DJ Ace, who found out he had kidney failure about 7 years ago, he had to go on dialysis and was told that he had to wait longer than others due to his ethnicity. He ended up being on dialysis for three-and-a-half years, which is two years over the UK average. To his fortune, A heroinic young lady called Naomi came forward to donate a kidney, she saw his appeal on social media and went forward for testing. Wonderful news, she was a match!
They both recovered really well and went on to talk about organ donation in the media, creating tonnes of awareness and unravelling the taboo around it.
I spoke to the photographer just before the speeches “Please could you take a photo of me with the NHS banner, my painting is on there” We headed over and I sheepishly had my photo taken:
Mingling is not one of my favourite things to do, inside this fully-grown man’s body, lives a bashful four-year-old boy who is really shy around meeting new people. That said, it’s not as bad as it used to be, I had really bad social anxiety in my teens and early twenties, but that’s a story for another time.
To my credit, I wasn’t so worried about chatting, I just floated about the place and little conversations just happened. I spoke to a lovely lady who had been on dialysis for 18 months and we talked about fistulas for a bit. I showed her mine and said that I kept it in since 2010. She made me laugh (out loud) when she said “Men don’t really care about their appearance do they?”. It did make me think about whether to take it out or not, but it’s very much a part of me. “Is it worth going through another operation to take it out?” I thought to myself.
I enjoyed the brief conversations too, walking past someone, with strong eye contact and a strong handshake, then 1 minute getting to the bottom of things.
Me: “Alright mate? How are you doing? Transplant?”
Him: “No, dialysis”
Me: “How are you getting on with it?”
Him: "It's shit, to be honest, It's depressing"
Me: "I can relate, mate"
Him: "My other half is giving me a kidney though" referring to his wife.
Me: "That's so lovely, great to hear"
We're cut off mid-convo as we're called up for a group photo. I didn’t mind, as it was a small-talk sweet spot for me, and I didn't have to talk about myself. "All patients come together for a photo, please" one of the organisers bellowed, in a headmistress way.
I didn't really like being called a patient, to be honest, I only go for quarterly checkups now and it didn’t sit right. It doesn't matter, of course, I am technically an "Outpatient" so it's all cool.
Here's the group photo:
A real mixed bag of people right there, from all over the country. The guy I was just chatting to, came from Scotland! (Fiona Loud is in the middle with the pink blazer on, policy director of Kidney Care UK. She did an amazing job with her team setting up this event!).
The group dispersed and I got chatting with an older gentleman. I would have pegged him at 72-73. He introduced himself and I instantly forgot his name. We shake hands… "Well, I turned 82 last year..." he goes, I nod inside my mind, thinking "You're looking very well, sir!" he continues "...my wife passed away 3 years ago and I've been doing dialysis now for a couple of years". I asked him how he was getting on with it and he said "Very well, thankfully". He's the kind of older gentleman who’s a rare breed, well dressed, looks after his appearance and walks a lot to keep himself fit and healthy. What a hero he turned out to be, he divulged that he took himself off of the transplant list so it could go to someone younger. "How long would I realistically be around to enjoy it?" he says matter of factly.
The sad thing about what he said was that he is his good health (apart from the kidney failure) and could probably reach 100 and still get around on his own. I read a harrowing statistic at the event that there's a 50% chance of death whilst on dialysis after 5-10 years.
We continued chatting for a bit and he went on to tell me about someone he knew from dialysis who decided to stop having treatment. His diabetes got so bad that he had to have a double-leg amputation. The gentleman with whom I was chatting, went on to say "After that happened, he thought there was no point in being around any more because he could no longer play with his grandchildren." How heartbreaking to come to that realisation. He felt burdensome to his wife and the hospital staff too. It was 10 days later after stopping treatment, that he passed away in his sleep peacefully. So so sad. But the gentleman reported that it was a relief of sorts for the family. 🙏
The day was more uplifting than sad overall. I met a really great bunch of people who want to make a difference. It’s still quite taboo to talk about organ donation and what arrangements you want after your death. Please help me to normalise this, as it will save many lives.
Sending my love to you and your family,
P.S. The painting I mentioned above:
MEMENTO MORI 1 (2022) – 60 cm x 40 cm x 1.5 cm – Acrylic painting on canvas
Based on the retro (orange background) UK organ donor card design, the painting is a reminder of the importance of organ donors in the lives of those in need of transplants and also reminds the viewer that we are all mortal beings. I have been a kidney transplant recipient twice, once via a deceased donor, and once via a living donor.
Memento Mori is a Latin phrase that roughly translates to ‘Remember your mortality’. This phrase has far from morbid intentions as the aim is to enable people to be grateful for their lives and to live their lives to the fullest.
Organ Donation Resources
Kidney Care UK www.kidneycareuk.org
NHS Blood and Transplant www.nhsbt.nhs.uk
NHS Organ Donation www.organdonation.nhs.uk
Organ Donation Week 2023 www.organdonation.nhs.uk/get-involved/organ-donation-week-2023
Organ donation register www.organdonation.nhs.uk/register-your-decision
Donating your kidney as a live donor www.organdonation.nhs.uk/become-a-living-donor/donating-your-kidney
MP Dan Jarvis CBE - Opt-out organ donation www.danjarvis.org/organ_donation_opt_out
The National Kidney Federation (US Based)
Organ Donation Stats (from Kidney Care UK and NHSBT)
Every day people die waiting for an organ.
7183 patients are waiting for a transplant (As of 31st August 2023)
80% of the above are waiting for a kidney.
The highest cause of kidney failure is high blood pressure and diabetes.
23 people progress into kidney failure every single day.
The average waiting time for a kidney transplant is 18 months but people from black and Asian heritage are likely to wait a year longer.
Dialysis is the only alternative treatment for kidney failure with a risk of death being 50% in 5-10 years.
❤️ If you have any UK friends, then please share with them too. ❤️
This issue is rarely publicized but it’s important. You can live a long and healthy life after organ donation. My uncle died last year at the age of 90. He donated one of his kidneys to my father in 1965 when he was just 33. In Ohio and many other states in the US you can become an organ donor by adding that information to your driver’s license. All you have to do is say YES. Thanks Slart!
Such a valuable post - thank you. I got to the point about the double-leg amputee and found tears on my cheeks. I've had type 1 diabetes for 37 years, and the threat of what are euphemistically called 'the complications' - kidney failure and amputations to name but two - is constant.
They won't even let me donate blood, but trust me, I am on the organ donation register for later! I hope to benefit others when I am gone.