Matthew’s story26 February 2019
They transplanted my kidney into Matts abdomen later that afternoon and returned him to the ward that evening. We were not able to see each other that evening as we were both very drugged but my husband and my daughter and her boyfriend, as well as Matts father, moved between both our rooms checking on us regularly and passing messages.
In April 2018 my then 22 year old son had been offered a great job with the Police and was about to graduate University of Birmingham with a degree in Politics. He beat hundreds of other applicants to the post and passed the fitness tests easily. He felt like he had the world at his fingertips. All that remained was a medical which we all assumed he would pass with flying colours. Life was good for our family. I was preparing to get married in May 2018 after meeting a wonderful man who turned my life around after a messy divorce 6 years previously.
At the medical everything looked fine, except that Matt had to repeat the urine test as traces of blood had been detected microscopically. We thought nothing of it. He gave another sample which again showed very slight anomalies and his GP suspected he had a mild urinary infection/ cystitis. I teased Matt that he had a “girls” condition and urged him to drink cranberry juice.
After the third sample continued to show traces of blood, Matts GP raised the possibility of a potential issue with his kidneys and he was referred to a Nephrologist. In the meantime, he continued to prepare to join the Police and they were happy to accept him once they had medical confirmation there were no serious issues. At this point we were still not too concerned as Matt looked and felt entirely fit and healthy. He was only weeks away from finishing his finals and was engrossed in studying and exams.
His GP checked back through his medical history and noticed that he had been diagnosed with Henloch Schoenlein Purpura (HSP) at the age of 3, but no follow-ups to this illness were ever carried out and I confirmed to Matt that his GP at that time had not mentioned anything to me about damage to kidneys or any long-term affect from HSP.
Matt saw a Nephrologist in Birmingham who suspected he might have a chronic kidney disease called IgA Nephropathy and 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 in tears following this appointment and delivered the shocking news. He was told that a career in the Police was 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. We were told he would need a transplant within 2-5 years. Matt had to cope with this news, as well as all the turmoil and disruption of tests and appointments and the devastating knowledge that his chosen career was no longer an option to him whilst taking his final exams, and it was testament to his amazing courage, tenacity and determination to try and stay positive, that he graduated with a First (Hons) degree from University of Birmingham in July 2018. The pride I felt when he walked to the podium was indescribable and tears were rolling down my cheeks.
Matt then had to re-think his career options and accept his second choice of graduate work placement, as he now knew that even after a transplant, he could not pursue a career in the Police with only one kidney. He left his Uni accommodation in Birmingham after graduation and came to live with my husband Gavin and I in Brighton until he was due to move to Reading and start his second choice job in September.
Whilst staying with us Matt was referred to a Nephrologist at Brighton Hospital. He told Matt that his kidney function was falling quicker than expected and full Renal failure was expected 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. Matt 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 worryingly high so he was put into medication. Throughout all of this, Matt was not offered any counselling or emotional support and it was very much left up to his family and friends to support and talk him through this shocking reality.
He moved to Reading in September 2018 and was referred to yet another Nephrologist – this time at Reading Hospital – who talked Matt through his dialysis options and suggested that Matts 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 was referred yet again- to Oxford Churchill Transplant Centre this time – where he was seen by a wonderful Nephrologist (Dr Harden) who took over Matts case and has consistently been at his side ever since. This doctor was amazed at how Matt was keeping himself fit and healthy and following all the advice and rules laid down. He was impressed by Matts resilience and determination to stay off of dialysis and stick to a rigid diet and lifestyle regime. Dr Harden 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.
I did not hesitate to get started on testing, and at the end of September 2018, I had my initial assessment and blood tests at Brighton Hospital – as did my husband, Matts stepfather. The following month I was told that I was a good match but my husband was not. Matts Nephrologist therefore wanted to push ahead with my tests and suggested I come to Oxford for them, to avoid any delays.
In November 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 fail at the final hurdle.
I was told I needed a cystoscopy and this was carried out back in Oxford the week before Christmas. In the meantime, Dr Harden wanted to keep Matt off dialysis and so February was suggested as a potential transplant surgery date.
I had the cystoscopy and was told at the time it was clear which 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. 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 Xmas chocolate, alcohol and other goodies 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 had told us that “if” the biopsy was clear and the medical team gave the go-ahead for the operation, it was pencilled in for 14 March 2019. On 4 January 2019 I had the procedure. It was 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 2 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 just 3%.
On Wednesday 9 January 2019 I received a call at work on my mobile. It was my Nurse Co-ordinator from Oxford “Laura”. She asked me if I was sitting down. She said 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. It is however 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!
She then told me to take a deep breath and said a cancellation had come up and the theatre was available on Thursday 24 January 2019 – just 2 weeks later. Matts medical team were anxious to get the operation done without delay as Matt was just “days” away from total Renal failure and emergency dialysis.
I went into overdrive and spoke to my boss immediately. She was so supportive and understanding and we managed to juggle my workload so colleagues could take over. I rushed around at home getting things organised and with only 2 weeks to go, I had little time to stew or get anxious about the operation.
My only concern in those 2 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 all so understanding however and one resident even sent me away as he had a cold and didn’t want me to be at risk!
On 24 January 2019 my son and I arrived at Oxford Hospital and were admitted to the Transplant Ward early 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 Matts abdomen later that afternoon and returned him to the ward that evening. We were not able to see each other that evening as we were both very drugged but my husband and my daughter and her boyfriend, as well as Matts father, moved between both our rooms checking on us regularly and passing messages. I was told that Matt had a chunk of his favourite chocolate as the first thing he ate when he woke up ! The following day I was wheeled to Matts room and we had a very emotional reunion !
We were both released from hospital after 5 days and are currently recovering at our homes. Matt is staying with his dad but is only a 45 minute journey from me so we are planning to meet again when we feel stronger. He tells me he feels amazing and has already been told at a check-up with the hospital that his levels are returning to normal. He feels brighter and more alert than ever, far less tired, and best of all for him he can now eat chocolate, McDonald’s and basically anything he wants ! He had lost so much weight and become so skinny pre-transplant that I was desperately worried about him, so this news cheered me in my recovery no end.
Personally, at almost 2 weeks post donation I can say I have never experienced pain like it before. My recovery is very slow, it really is baby steps each day, and my lack of independence and the weakness I feel is quite disconcerting. However, I wouldn’t change a thing and would donate again in a heartbeat to save my child’s life.
If the last 8 months have taught us anything, it is that shocking life events can creep up on you when you least expect it, and can knock your world for six. It’s so important therefore to appreciate what you have and never underestimate the power of love and support to get you through. The love of my husband, my children, our close family and special friends, as well as the support of mine and Gavin’s work colleagues and the amazing and incredible NHS have been invaluable.
Thank you for sharing our story to inspire more living donors to come forward and save a life. I have been assured that I can live perfectly healthily with one kidney and the relief I feel to know I have given my son life -for the second time – is worth all the pain, time, cost and inconvenience of the testing work-up, operation and recovery.
Mrs Allison Morris