Life Stories

Stu's and Rich's Story

Richard's Story

In January 2001 I passed a lot of blood in my urine.  Further tests by my GP indicated protein was also present and I was referred to a specialist kidney unit at Sheffield Northern General.  A kidney biopsy showed that I had a rare genetic condition called Alports Syndrome - a defect in the type IV collagen which forms a key part of the kidney.

As so little was known at the time I was told to expect a decline in kidney function in my 50s.  I was placed under yearly clinic checks but, after completing university with no problems, I missed appointments as I continued with life and building my future ...

Unfortunately, the prediction wasn’t accurate.  In October 2011 I went to my local GP because of frequent headaches.  A blood pressure test showed something was wrong and I was admitted into hospital with end stage renal failure, aged 33.

An official diagnosis was made a few days later and I had to decide on a method of dialysis.  I was also asked if I would like to be considered for the transplant list and if I thought anyone in my family would be willing to donate, given that the deceased transplant list has an average wait of almost three years.

My donor, Stuart, offered to be tested just a few weeks after I had started dialysis.  I asked him to go away and think about as he had two young children, but he began a long process of tests to see if he would be a suitable donor match.  Our journey on a long and emotional path started.  I will never forget the call I received from Stuart's wife, Nicola, when they had the final results: “Will the left one be okay for you, Rich?” she asked.  I burst into tears.

A date was set - 18th February 2013.  I was worried about Stuart; he didn’t need to risk the operation but he was doing it to help me; I found this very humbling.  Sat in my room, awaiting news, the donor coordinator finally let us all know Stuart was doing well in recovery.  It was such a relief; he was safe.

I was taken to theatre around midday and awoke after what felt like seconds.  I had no pain and was being asked to sip lots of water by the amazing team in the recovery room.  I am not sure if it was the large doses of pain killers or something else, but a few days later I was told I had flashed a few people as I lifted my gown to see where my gift had been placed!  I was returned to the ward at around 7 pm; my new friend had been producing lots of urine from the moment it was plumbed in!

The following day I heard shuffling feet - Stuart had walked to my room just over 24 hours after having a kidney removed.  Less than three days after his surgery he was allowed to go home; two days later I was discharged with a very large bag of medication to spend my first dialysis-free weekend in almost 18 months at home.  

The change it made to my life can’t be put into words.  I will be forever grateful for the wonderful gift I have been given and what it has allowed me to do with my life.

Stuart's Wife, Nicola

Stuart has always played down what he went through, just saying it was something that Richard needed and he always wanted to be the one to donate.

I remember the day Stuart came home and told me Richard was unwell.  I initially thought it was man flu but could see that something was on his mind.  He told me that about his renal failure and dialysis; then one day he told me that he wanted to consider being a living donor.

I went with Stuart to every appointment, knowing it would just go over his head as he focused on the end goal.  After the first blood test and then the cross-matching, Stuart kept saying: "I’ll be a match; it will be me."

Stuart was told that if he was to be a match he had to lose weight to be considered for the operation.  He had a strict diet of porridge for breakfast, fruit for lunch and then grilled chicken or fish with fresh vegetables in the evening.  I was responsible for hiding the kids' treats and not buying anything that would tempt him.  After work he would eat and then go to the gym for two hours and then swim for an hour. The kids and I hardly saw him but it was worth it because we helped Richard get better as a family.  Over eight months Stuart went from 18 st to 13 st 13 lb and hit his target.

One of the final tests was his kidney function test.  We spent 12 hours at the hospital with blood being taken every two hours and special dye injected.  We both returned home exhausted but Stuart still went to the gym that night.

I remember the day that we had a call from the donor coordinator asking if it was possible for Stuart to be at the hospital for 2 pm.  My nerves started to kick in but Stuart was calm on the phone; the drive to the hospital was quiet.  The first thing the coordinator wanted was to weigh Stuart.  I thought: "Why would they weigh him if he wasn’t a match?"

We went through to the surgeon’s office and an image of Stuart's left kidney was on the screen - and they said they would like to use it.  We both broke down; all the hard work and determination had paid off.  We were so happy; we hugged and left with a spring in our step.  I had to ring Richard as Stuart was chocked; we were all ecstatic.

The weeks passed and a date was set.  Stuart didn’t appear to be nervous - or he hid it well.  I was just relieved when the coordinator told us that Stuart was in recovery.  I held back the tears as we all sat with Richard waiting for him to go down to theatre.

Stuart recovered really well from the operation.  The only thing that bothered him was the trapped gas that had been pumped into his abdomen during the surgery.  I would spend hours rubbing his back through the night to help ease it. From start to finish it is an experience neither of us will forget.

Summary

During the following four years so much has changed for both Stuart and Richard.  Just over a year after the operation Stuart was married to his partner Nicola and, six months after his surgery, Richard became a first-time father who didn’t have to spend time away from his family on dialysis.  Stuart and Nicola are expecting an addition to their family in July 2017.