Allison’s Story

His GP checked back through his medical history and noticed that he had been diagnosed with a rare blood condition called Henoch Schonlein Purpura (HSP) at the age of 3, but no follow-ups to this illness were ever carried out and his GP at that time had not mentioned anything to me about damage to kidneys or any long-term effect from HSP.

Matt saw a Nephrologist who suspected he might have a form of chronic kidney disease called IgA Nephropathy. They explained to him that this was incurable and would likely lead to full renal failure and require dialysis and a transplant in years to come.

Matt called me, understandably shocked and upset to deliver the news. He was told that a career in the Police was now out of the question and he had been referred for a kidney biopsy.

Just 3 weeks before my wedding in May 2018, Matt underwent biopsy at QE Hospital in Birmingham and the diagnosis of IgA Nephropathy was confirmed.

While staying with us, Matt was referred to a Nephrologist at Brighton Hospital who told him that his kidney function was falling quicker than expected. Full renal failure was anticipated within a year, and he should prepare himself for dialysis. This was all a shock to us, as he appeared to be well and was not showing any outward signs of kidney disease. He was referred to a nutritionist who gave him a list of banned foods and told him that a careful diet was crucial to try and prolong the function of his kidneys. His blood pressure was also worryingly high, so he was put onto medication.

He moved to Reading in September 2018 and was referred to Oxford Churchill Hospital. They talked Matt through his dialysis options and suggested that Matt’s best chance was to have a transplant from a living donor. Naturally as his mother, I told Matt that I would put myself forward for testing. Matt’s nephrologist called me and explained that this all needed to happen sooner rather than later as Matt was deteriorating at a faster rate than first envisaged, and that a transplant should be carried out within 6 months.

In November 2018 I had more blood tests, an ECG, chest x-rays, ultrasounds and CT scans. In December I was told that everything was clear except for persistent microscopic blood in my urine – the same problem Matt had before all this came to light. I was devastated that I had come this far in testing (and made the 200-mile round trip journey from Brighton to Oxford at least 5 times already with lots of time off work) and couldn’t bear to think I might fall at the final hurdle.

I was told I needed a cystoscopy which was carried out in Oxford the week before Christmas 2018. In the meantime, the doctors wanted to avoid dialysis for Matt and so suggested February as a potential transplant surgery date.

I had the cystoscopy and was told at the time it was clear. That was a relief, but this meant that because they had not determined a reason for the blood, they needed to carry out a biopsy of my kidneys to check I too didn’t have kidney disease or something else like cancer, stones or infections.

I was booked for the procedure at Oxford on 4 January 2019 – so it was quite a stressful holiday season for us all. Matt spent Christmas with us but we could see he was quite poorly, extremely tired and pale and getting out of breath frequently. He was also on such a strict diet that all Christmas chocolate and alcohol were banned. He was living on white bread, rice and peas. It broke my heart to see my son so ill and weak.

My transplant co-ordinator told us that if the biopsy was clear and the medical team gave the go-ahead for the operation, it would be pencilled in for 14 March 2019. I ended up having the biopsy on 4 January 2019. It was certainly uncomfortable, and I had to spend 6 hours lying completely flat afterwards to avoid bleeding, followed by a 3-hour drive home. I then had to spend the following days resting and not lifting anything heavy.

I had been told to expect the results by the end of January. The uncertainty and the waiting were nail-biting, but I had to focus on my son who was now showing alarmingly high levels of creatinine in his blood and had a remaining kidney function of less than 5%.

On Wednesday 9 January 2019, less than a week after my biopsy, I received a call at work. My Nephrologist had reviewed my biopsy results and they showed a condition called Thin Membrane Disease, which is what was causing the persistent microscopic blood in my urine. Luckily this is a benign condition and the function and structure of my kidneys was so good that the team had made the decision I could donate my left kidney to my son.

I was so overjoyed and relieved that I burst into tears in the middle of my office!

My Kidney Donation

My co-ordinator said a cancellation had come up and the operating theatre was available on Thursday 24 January 2019 – just 2 weeks later. Matt’s medical team were anxious to get the operation done without delay, as Matt was just days away from total kidney failure and emergency dialysis and was really quite unwell.

I managed to juggle my workload so colleagues could take over and rushed around at home getting things organised. With only 2 weeks to go, I had little time to worry or get anxious about the operation.

My only concern in those weeks was to avoid all colds and infections which was not easy due to the time of year and the fact that my job as a Housing Officer means I come into contact with my residents all the time visiting them in their homes. They were very understanding however, and I managed to avoid all germs.

On 24 January 2019 my son and I arrived at Oxford Hospital and were admitted to the Transplant Ward to have our operations. I was taken into theatre first and after a 4-hour operation they removed my left kidney. Matt came to see me in the Recovery Ward on his way to the operating theatre. I was so drugged that I believed I had dreamed his visit!

They transplanted my kidney into Matt later that afternoon and returned him to the ward that evening. We were not able to see each other as we were both very drugged, but my husband and my daughter, as well as Matt’s father, moved between both our rooms checking on us regularly and passing messages. The following day I was wheeled to Matt’s room and we had a very emotional reunion.

A transplant is not a cure for kidney disease. However, what we sincerely hope it will do is give Matt many years of a normal life so he can pursue his dreams both personally and professionally. He will need to take anti-rejection medication for the remainder of his life, and hope that his body does not reject my kidney.

Unfortunately, it is likely Matt will need further transplants in his lifetime due to his age, which is why it is so important to carry on the excellent pioneering work of research into kidney disease, so we can hope that in years to come kidneys can be “manufactured” and patients will not need to rely on donor organs, which are still very much in short supply.

Organ donation is the greatest gift anyone can give another person. Through the miracle of live donation, I was able to save my sons life, with little effect on my future health and my own life.