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Ross's story

Ross's story

The first anniversary of a kidney transplant is an unforgettable milestone for anyone. For Ross, a Baptist minister and father of three from Milton Keynes, and his wife Joy, who selflessly donated her kidney, it was a especially meaningful.

The couple rejoiced in this significant step, having encountered many obstacles in their 25-year journey together, including Ross losing a leg in a near-fatal accident in 2016 and suffering a heart attack in 2020.

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Ross and Joy

Ross received a diagnosis of PKD in 2006 after experiencing severe abdominal pain, which turned out to be a burst kidney cyst. Apart from raised blood pressure, he exhibited no other symptoms prior to this. As neither of his parents had PKD, it’s likely that Ross developed the condition due to a spontaneous mutation, which accounts for around 10% of cases.

Over the years, Ross suffered several episodes of cyst rupture, leaving him in extreme pain and immobile at times. By 2020, he began to feel increasingly fatigued, and was sleeping for up to 2-3 hours each afternoon by the time he started dialysis in August 2021. His appetite had decreased to the extent that he sometimes only ate once a day.

Fortunately, he adapted well to peritoneal dialysis, performing it at home six nights per week. However, being an amputee, he faced additional obstacles in setting up the equipment.

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Ross's dialysis machine  

Ross's accident occurred on the exact day he received his transplant six years later, when he took his new motorbike out for a spin. Within minutes of setting off, he was lying in the road with his life hanging in the balance. The Thames Valley Air Ambulance quickly airlifted him to hospital, where he underwent a seven-hour surgery to save his leg. Unfortunately, he suffered multi-organ failure, leading to the amputation of his right leg above the knee the next day. After receiving a prosthetic leg, he began his long journey of physical and psychological recovery with the support of his family and church community.

Driven by a desire to give back, Ross later became a volunteer for Thames Valley Air Ambulance and has since become their Chaplain.

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The Thames Valley Air Ambulance
 
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He was incredibly grateful when his sister stepped forward to donate a kidney, but it was Joy who turned out to be a near-perfect match, which the couple considers a miraculous result. Although they were understandably anxious about how their children would cope with both parents undergoing surgery, the transplant was carried out with great success on April 8th, 2022 at the Churchill Hospital in Oxford.

Ross's recovery was tough, as his body adjusted to the new kidney and medication. Resuming his mobility was particularly challenging, as he had to exert himself more to avoid falling, especially during the healing phase. It takes around 65% more effort to walk with a prosthetic leg. As expected, Joy required strong pain relief initially, but quickly regained her fitness.

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The couple, post-transplant

Before his transplant Ross enrolled in The TWO Study, a research study by Oxford University, aimed at improving the outcomes of organ transplant recipients by minimising the medication required to prevent rejection. Immunosuppressant medications, though essential and effective, have serious side effects that can increase the risk of infections and other complications, including cancer, and diabetes. The study involves taking a sample of the patient's blood before the transplant to isolate and purify Treg cells, a type of immune cell. These cells are then reintroduced into the patient's bloodstream in a high amount after the transplant to alter the immune response and prevent rejection. Ross has been able to decrease his immunosuppressant medication from three to one, hopefully resulting in fewer side effects in the long-term.

Ross's experience highlights the importance of organ donation and the on-going need for research to improve transplant outcomes. It also underscores the significance of support from loved ones and communities in the face of adversity. Ross and Joy's journey together is a testament to the power of resilience, faith, and love.

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Ross and Joy living life to the full with their family

Despite the many challenges, the couple lead full and busy lives with their three children, Joel (23), David (21), and Charis (15). In his spare time, Ross enjoys playing golf, guitar, and drums, in addition to his work with the Thames Valley Air Ambulance and his role as Senior Pastor at Shenley Christian Fellowship.

When asked if he has any advice for coping with PKD, Ross said:

“Pace yourself and get plenty of rest. Pushing yourself too hard or denying the effects of the disease will only make things more difficult. It's important to keep fighting, even if it's just mentally. I believe we have a choice - we can either give up, succumb to the disease, and lead a miserable life until we get a transplant, or we can choose to enjoy life as much as possible and remember that there are many others in the world who have PKD and much less support or hope than we do here in the UK”.

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