A Gift Beyond Friendship: A Living Donor Journey Through the Kidney Sharing Scheme
Living donor perspective
My surgeon squatted down next to me, as I was sitting gowned up on the edge of the bed in the anaesthetic room, and took both of my shaky hands in his. He looked me in the eyes and said ‘Tracy, just think. Today you are giving three whole people a new kidney.’
I was initially disappointed when I learned that I wasn’t a direct match for my best friend Jude. We’d known she had problems with her kidneys for about 25 years before I started being tested to see if I was a match, so the possibility of donating one of mine to her had been in the back of my mind for a long time. When Jude’s doctors started talking about a transplant it therefore didn’t really feel like a decision I needed to make; just the next step in the process of trying to improve her quality of life and ensure that we could continue to experience adventures together.
The kidney sharing scheme was presented to us by the fantastic living donor team at University Hospital Wales as an alternative to direct donation. Jude asked me to think carefully about whether I still wished to proceed with the donation process given my kidney wouldn’t be going direct to her but I didn’t even need to consider my answer; to me there was no difference. I was hoping to give a kidney to improve Jude’s kidney function and free her from the uncertainty and difficulties of living with chronic kidney disease, rather than to ensure that mine was transplanted into her. It took me a while to realise that (apart from managing the logistics) the sharing scheme was perhaps an even better option. It enabled Jude to receive a kidney that is as good a match as possible but also meant that, in our case, we were able to complete the puzzle for two other couples waiting for matches in our ‘chain’ of three pairs of donors and recipients. Through the scheme Jude also played a critical role in ensuring that two other people in need could receive a new kidney! When a couple enters the sharing scheme, their data is processed along with that of everyone else in the scheme on a data run four times a year. It’s an incredibly complex process that seeks to find the best outcome for as many people as possible. We were beyond lucky to find our matches in our first run but for some it takes much longer. It’s nice to think that we might have been able to complete the picture for a couple who had been waiting a while to hear the good news that a match was available.
You can’t get away from the fact that being in any chain (or triangle in our case) through the sharing scheme does have its logistical challenges. All centres and surgeons need to agree on a date – there is much less flexibility to choose than with a directed donation – and having multiple parties involved does increase the risk of someone being unwell and the surgery being postponed. This did happen to us once, but all went ahead smoothly on the second attempt, just 8 weeks later.
The management of the surgical process was incredibly slick and we had total confidence in the team at all times. I’m sure, however, that it was a little more fraught behind the scenes to co-ordinate between the three transplant centres than it looked from our perspective. My operation happened first thing in the morning with my kidney zipping off to its new home elsewhere in the country and Jude receiving hers later on that afternoon. It was a tense day for both of us waiting for news of the other’s surgery but we were able to message later on that evening and see each other early the next morning once I was able to walk to Jude’s room, kicking off what was an unexpected intense bonding period for the both of us for the remainder of our stay. I hope that the kidney I donated is settling as well into its new home as Jude’s has done. Seeing her creatinine levels drop to normal levels and her kidney function and energy levels shoot up in the days and weeks after surgery made the whole process totally worthwhile and I’d make the same decision again in a heartbeat.
Kidney recipient perspective
Kidney disease has been in the fabric of my life from a young age, when my Uncle David passed away from kidney failure in 1989. It has since transpired that seven family members on my father’s side have chronic kidney disease and a suspected hereditary condition which is being explored through genetic testing, with the hope that more information will benefit younger family members who may be affected.
I was diagnosed with hypertension in my late teens and was monitored as a nephrology outpatient until 2014 when my kidney function began to decline sharply. I was told to anticipate kidney failure over the coming years and was advised that, given my young age and otherwise good health, a transplant would be the best option.
Symptoms tend not to manifest until the late stages of kidney disease, which is why sadly, many people ‘crash land’ into renal services and are forced to immediately make decisions about life saving treatment options. In my circumstances, having a lead in time to prepare for kidney failure has been a gift: our family maxim became ‘YOLO’ (you only live once) and we have taken every opportunity to travel, spend precious time with our loved ones, and enjoy life to the max. It also motivated me to get involved with Kidney Wales, having served as Managing Director and now the Chair of the Board of trustees; this has given me a really positive focus and being part of the wider kidney community has been an important part of my personal journey.
By November 2022, my kidney function had reached 20% and I knew this was the cue for discussions about the transplant process. A number of family members and friends made the incredibly selfless offer, coming forward to be tested to see if they could be a live donor match, but unfortunately none were suitable. The sharing scheme was recommended as the best option. I didn’t want to assume that this would be suitable for the potential donors who had come forward and felt awkward about making the ‘ask’. I needn’t have worried; I was blown away when Tracy said immediately that it made no difference to her whether she donated directly to me or to a stranger: I just needed a suitable kidney.
I entered the July 2024 matching round with Tracy and my husband as willing donors. We were shocked and overjoyed to receive phone calls in August to confirm a match had been found for Tracy and me as the pair. The medical checks were rigorous, giving confidence in Tracy’s good health and suitability as a donor. We were also required to demonstrate the genuine nature of our friendship and to prove no coercion was involved – cue the resurrection of some rather embarrassing photographs of our time together at university, and the countless adventures we have enjoyed together since.
The big day arrived. The high levels of communication, care and professionalism of the clinical team assured us that we were in safe hands. The wait for Tracy to come out of surgery was the longest of my life. I kept busy sending messages to Tracy’s close family and friends to keep them updated and read quietly. Relief came when the surgeon told me the surgery had gone well and Tracy was in recovery and doing well. A few hours later, it was my turn.
By 10:30pm, we were both safely back on the ward. I woke the following morning with various needles and tubes coming out of my body; I was comfortable but bed-bound. The goal of living donation is for transplantation to take place while the recipient is in relatively good health; prior to surgery my kidney function had dropped to 14%, which meant that, whilst I had started to make adaptations to my lifestyle, the burden of symptoms were not too high and I have, thus far, avoided dialysis. For this reason, I did not experience the ‘lightbulb moment’ of waking up after surgery and feeling instantly better; nonetheless over the coming days the regular blood test results gave me confidence that the new kidney was settling well and that this would make a massive difference to my quality of life. I first started to notice the difference made by the new kidney when I got out of bed and walked around. My legs felt lighter and I was less breathless. I hadn’t realised the extent to which the disease had affected me prior to surgery.
Tracy has given me the most precious gift of being able to think about the future; it’s the start of a new chapter. A new depth of our love for each other. A new treatment regime to get to grips with, and a new set of risks and opportunities to think about. Having kidney disease has taught me valuable lessons about resilience, and an acceptance of the highs and lows. I start this next phase of the journey with renewed hope and energy to continue to live life to the full – including making lots more memories with Tracy.
Health professional’s perspective
As a Live Donor Clinical Nurse Specialist, it is an enormous privilege to become part of people’s lives while we explore the possibility and options around living kidney donation. I had the pleasure of supporting Judith and Tracy as they embarked upon their journey of donation via the kidney sharing scheme. As specialist nurses, we talk through all the options that are available to facilitate living kidney donation, and it was clear from the first consultation with Tracy that she was open to all avenues. I find the analogy of them being the missing part of other people’s puzzle a wonderful perspective to take, but of course, we understand that the sharing scheme may not be the right option for everyone. Prior to the kidney sharing scheme’s debut in 2007, if family members were not found to be suitable donors, it provided limited options for the recipient. The sharing scheme has now facilitated thousands of transplants for people for whom this may not previously have been an option.
As Judith and Tracy have alluded to, the biggest challenge with the kidney sharing scheme is often associated with logistics. Working with teams in different transplant centres, who may have different theatre dates, can be a little tricky at times, but rarely insurmountable – we all have quite well-honed negotiation skills! When a pair is matched, there is a lot of organising around obtaining blood samples to ensure that there are no unexpected surprises with the tissue match. Naturally, where there are more people involved in a process there’s the potential for unforeseen complexities. In Tracy and Judith’s case, we had to postpone the first planned surgery. This is always a disappointing scenario for all involved but given we all have the same goal in mind, we are often able to rearrange the surgery in a timely way (provided it is safe for all involved). When I went to break this news to Tracy and Judith, they knew something was amiss before I even started talking – a testament to how well we had come to know each other during the work up (and a note for me to work on controlling my facial expressions a little better perhaps!). I was pleased we were able to reschedule the transplant for Judith and Tracy without any difficulty and we were second time lucky.
The day of surgery is often a flurry of activity and anticipation – I don’t think anyone involved with an exchange gets much sleep the night before, clinicians included! The morning involves a lot of communication with our surgical team and the teams in the other centres to ensure that all of the people involved are fit and well for surgery before anything gets underway. We then update all involved once the kidney has left the hospital and is on the way to its new home! I often think of the drivers and the very precious cargo they are transporting, and the vital role they play in ensuring the kidneys arrive safely to their new destination.
The follow up post-transplant involves multiple visits to clinic for the recipient so that the transplant team can keep an eye on how the new kidney is getting along. Our donors also have some check-ins to ensure that their recovery is going smoothly after donating. As time goes on, I notice that I see and hear less from Judith and Tracy – and that is exactly as it should be. It means that their lives have returned to normal after this significant life event, with the hospital visits playing a smaller role. And that is a wonderful outcome.
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