It was 1993, when aged 23 my daughter, Amitaśūrī was first diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD), an inherited condition that causes small fluid-filled sacs called cysts to develop in the kidneys which is an hereditary condition.
In 1995 a life-changing and almost catastrophic event happened in that she suffered a blinding headache which turned out to be a cerebral haemorrhage and underwent emergency surgery. Although the surgery saved her life, the aftermath effects and recovery were significant.
Approx 3-7% of patients with ADPKD develop brain aneurysms. After a few months she again had brain surgery to treat another aneurysm which was constituting a significant risk. The rehabilitation was progressing when we were presented with a frightful dilemma, there was a third aneurysm which required immediate treatment. and further surgery would be extremely risky. After further research I came across an alternative method of treating cerebral aneurysms called, “Endovascular Coiling”. It is carried out under general anaesthetic and the procedure involves inserting a thin tube called a catheter into an artery in the groin. The tube is guided through the network of blood vessels, up the spine, into the neck and head, and finally into the aneurysm. I was taken aback when her consultant said the procedure could be done at her hospital and that Amitaśūrī was a suitable candidate, as they were part of a worldwide study group who had worked on this method and they had the skills and the means to carry it out. So Amitaśūrī had the operation using Endovascular Coiling, which was a complete success.
And so to her kidney problem. We became aware in 2011 that her kidney function had reached such a level that a transplant was necessary. My wife Margaret and I began the process of working up to donate a kidney. After many tests it became clear Margaret was the better candidate to donate.
Early in 2012, preparations began for Mr Titus Augustine to perform the transplant in Manchester Royal Infirmary. Amitaśūrī’s native kidneys had become so enlarged, with cysts, that it was deemed necessary to remove them prior to transplanting the new kidney from Margaret. This was in itself a major operation and would take several weeks of recovery before the transplant could proceed. In the meantime she had to have what was described by the consultant as an aggressive form of dialysis. This she bore with great fortitude and was fit to receive the kidney from her Mum in May 2012.
Margaret, David our son, myself and several of the family travelled down to Manchester for this emotional event. Twenty four hours before the planned operation we received the devastating news that it could not proceed as Amitaśūrī had developed antibodies. It meant Margaret was no longer a suitable donor. The situation was dire.
Although members of the family offered to donate, it would have taken a considerable time to have a potential donor go through the work up procedure to be approved. During this time, our wonderful daughter had no kidneys and would have to continue the aggressive form of dialysis to stay alive.
Then, to our incredible good fortune, an angel (Amitaśūrī calls her a “Bodhisattva”), appeared in the form of a Buddhist friend, who had already been through the workup procedure and approved to be an altruistic donor. Amazingly – and wonderfully – she was a near perfect match. We travelled down to Manchester to be present for the next scheduled transplant, only to be told the operation was off it was possible that Amitaśūrī might not be well enough to undergo, or survive, the procedure. She was devastated, as were we all. She had a bilateral nephrectomy (removal of both diseased kidneys), then three months later the transplant was successfully completed.
Four years on, Amitaśūrī is doing great; she has a creative response to the ongoing situation and management of having aneurysms, and a kidney transplant, and she regularly participates with the Manchester Team, in the British Transplant Games. She has also re-trained herself as a Chaplain, and is working in hospitals and other establishments where people are suffering, when spiritual care, particularly during times of illness, is greatly needed – a job for which she is eminently suited.
Not only seeing and appreciating how Amitaśūrī lives, and honors the life that she has, and has been enabled to have, by so many people, another big part of my motivation to do what I did comes from a recent experience I had of being quite ill.
After being in Ninewells Hospital, Dundee myself for a lengthy period in the latter part of 2015 and early 2016 I wanted to regain my fitness and started a programme with Sam Foulkes, a personal trainer, near where I live.
I had only just begun this schedule when I learnt that Kidneys for Life were planning a fundraising trek to The Great Wall of China. This was to raise funds to benefit some 180,000 people who have been diagnosed with kidney disease. Of these, 37,000 have end-stage renal failure and suffer the same trauma of dialysis as my daughter. Kidneys for Life is based in Manchester, and the surgeon who carried out Amitaśūrī’s transplant was participating in this China Wall Trek.
When I told my wife, Margaret, and my family I was considering this challenge, they expressed doubts about the wisdom of doing so at my age after my illness, but for me, it ticked a number of boxes.
1) It was extremely challenging.
2) It would give me a goal to train hard to be fit enough.
3) It was very exciting.
4) And not least, it would enable me to give something to the cause of helping research into this dreadful disease.
I connected with the China Trek 2016 group and started training with Sam, walking in and around St Andrews, including the Fife Coastal Path. When Margaret and the family saw my determination, they became very supportive and were of great assistance with fund-raising. The minimum sponsorship requirement was £3,200, plus a registration fee.
With thanks to everyone who supported me, I managed to raise over £6,000
Fifteen China Trekkers set off from Manchester Airport in October, 2016. The group was four men and eleven women. Most, but not all, worked at MRI. Others were kidney transplant recipients. Some, like me, had relatives who had received kidney transplants. There were two transplant surgeons; Neil Parrot and the other was Titus Augustine, who has been a surgeon for over 20 years, and has performed more than 800 kidney transplant operations, including my daughter’s.
Their unit recently performed their 6,000th kidney transplant.
The Great Wall Trek was a truly awesome experience. I can’t begin to describe how utterly spectacular it was, much more challenging then I had imagined.
Yet, with great support from my wonderful fellow China Trekkers; Adele Adetoro, Karen Ainsworth, Titus Augustine, Sheila Augustine, Aditi Augustine, Wyn Gregory, Darren Kelly, Sarah May, Neil Parrott, Carl Phillips, Melanie Phillips, Sarah Picken, Lesley Pringle, Carol Treasure, plus the delightful Doctor, Marie-Clare Van Roon, and our brilliant guides, Martin Cracknell & Puma
I Did It !!!
James Yule