Life Stories

Kevin's Gift to his Daughter, Kathryn

Kathryn's Story

In September 1998 I developed a rash on my legs - a rash that, when pressed, didn't go away.  Otherwise I felt perfectly fine.  Doctors diagnosed me with Henoch Schonlein Purpura (HSP) and told me that I would be better in around six weeks; however, this was not to be.  I got progressively worse, to the point where I was bed-bound as the illness affected my whole body.

In January 1999 I was admitted to Great Ormond Street Hospital with kidney failure due to the HSP.  I had lots of treatment, including plasma exchange and dialysis, and amazingly left hospital with around 40% kidney function.  I was told that I'd need a transplant in 14-15 years.

The hospital was correct.  In May 2012 my mum and dad were both tested to be donors.  The decision was put to us to decide who would go ahead with further tests as they were both a match.  My dad really wanted to do this so we went ahead.  Over the next year he had lots of tests, some very intrusive, to make sure that he was fit enough to donate.  I ended up on dialysis in February 2013.

On 9th May 2013 the day came for Dad to donate to me.  I was more worried about him than I was about myself, knowing that medically he didn't need this operation.  Dad went down to theatre in the morning.  The four-hour wait for Professor Nicholson and his team to come up to the ward and tell us that everything was ok was the most harrowing time of my life.  To know that my dad was risking his life to make my life better is something that I don't think you can ever comprehend until you've been there.  The relief when we were told that he was okay was the most overwhelming moment of my life; I cried with relief.  Now it was my turn to go into theatre. 

I woke up a few hours later in a lot of pain.  Some high doses of medication later and I was wheeled back to the ward.  As I entered the ward I was wheeled past my dad's bay and I looked in to see if he was okay.  We both smiled and waved at each other.  The next day I ended up going back into theatre to sort out a bleed and a clot near my new kidney and ended up in intensive care.  My new kidney, aptly named 'Kev', was working amazingly and one day my fluid output was 12 litres - amazing!

I was discharged eight days after the op and am doing really well.  It's now nearly four years on and I stay relatively well despite having a low immune system.  I can't even begin to explain how much of a difference it has made to my life.  For Dad to see this is incredible.  We have always had a close bond, which has become even stronger by him donating 'Kev' to me.

Kevin's Story

Kathryn was admitted as an emergency case to Great Ormond Street Hospital in January 1999 with little or no kidney function following a bout of HSP.  Intensive treatment over a period of two weeks restored her kidney function to approximately 40% and we were told that she would need a kidney transplant in fourteen years or so.

Thirteen years later, whilst under the care of Mike Nicholson’s team at Leicester General Hospital, it was determined that Kathryn was nearing end-stage kidney failure and that a transplant was the next step in her treatment, preferably before her kidney function was so low that dialysis was needed.

Kathryn advised us when the transplant team were holding an open morning at LGH for prospective living donors.  Myself, wife Anne and Kathryn attended and listened to various members of the transplant team talking about the requirements of donating, the intensive testing which would be needed, the operation itself, recovery and possible risks.  Following this the potential living donors, if still interested, were invited along to the Pathology Dept for blood tests to determine if there was a good tissue match between them and their intended recipient.  When the results came back a week later Anne and I were both an equal match with Kathryn.

Decision time.  Who was going forward for the further tests?  I was very keen to do it.  Anne and Kathryn agreed that I should go first and if, for any medical reason, I was found to be unsuitable Anne would then put herself forward.

At this point I was quite excited and was looking forward to the whole experience knowing that this would hopefully give Kathryn the best chance of living a full and normal life.  However, I’m not the best patient when it comes to medical treatment and investigations; I look in the other direction when hypodermic needles are even mentioned, let alone brought out!

The tests were extensive and, towards the end, quite intrusive.  Over the twelve months between volunteering and the operation I attended hospital at least two or three times a month.  The tests involved taking blood or urine samples more or less very time I walked in to the renal department, echo sounds, ECG’s, X-rays, 24-hour blood pressure monitoring, 48-hour urine sample collecting, CT scans, MRI scans, kidney function tests, cystoscopy and finally a kidney biopsy.  I’m told that not all prospective donors need cystoscopy and biopsy but in my case there was always a slight trace of blood in the urine.  These two tests ruled out kidney disease and various cancers which could have caused it - it was just an unexplained cause which sometimes does occur.

Not once was I ever bothered or worried about any of these tests.  Kathryn had undergone many such tests herself and never complained or sounded worried. I looked forward to them for the experience - to see how they were performed and to look at the results once they had been analysed.  I managed to find an element of humour in all of them.

The kidney function test involves the injection of a radioactive isotope into the blood system after which blood samples are taken on the ¼ hour, then ½ hour over a period of three hours. On completion of the test I was asked if I was going abroad on holiday.  I thought it was a strange question and not relevant to the situation until it was explained that the radioactive isotope used in the kidney function test remains in the body for several weeks and could trigger the anti-terrorist alert system at the customs!  I was given a letter with hospital contact details on to produce if needed so as not to be carried off for interrogation.  That wouldn’t have been a very good start to the holiday.

In December 2012, we were looking toward spring of 2013 for the transplant to take place. I was advised that I should lose a bit of weight and get as fit as possible as this would aid recovery.  After being well fed over Christmas I was weighing in at 14 st 5 lb (c91 kg), I resolved to go for a four-mile walk/jog every day no matter the weather.  This I did and, after four months, I had lost 20 lb and was down to 12 st 12 lb (71 kg) and feeling extremely fit.

The big day arrived.  In to hospital on the Wednesday for final tests and preparation before an early start on Thursday morning.  The operation to remove my left kidney was done by keyhole surgery as this aids a quicker recovery.  However, if there were problems a major incision would have to be made.

Everything went to plan leaving me with just a 100 mm cut to the lower abdomen and four small incisions where various tubes and lines had been inserted.  The weight of the removed kidney was half a pound - quite a large one.  I eventually came round from the anaesthetic some time later that afternoon feeling not too bad, at least no discomfort; just glad to be lying down in bed.

Post-op day 1, Friday.  A little discomfort but no real pain.  However, felt really rough (imagine your worst ever hangover times ten).  This was not necessarily due to the fact that I had just gone through a major operation which was of no benefit to me, resulting in the loss of 50% of my kidney function, but down to the fact that my body doesn’t particularly react well to general anaesthetics.  Kathryn’s op had gone to plan and her new kidney was working well, so my discomfort was well worth it.

Post-op day 2 - Saturday. Felt much better, but started to suffer with pains in the shoulders.  Apparently, this is caused by the CO2 gas which was pumped into the abdominal cavity to ease the operation, so spent the day lying in bed listening to the iPod. 

Post-op day 3 - Sunday.  Felt even better and was getting used to doing nothing and being waited on!

Post-op day 4 - Monday.  Discharge day.  Signed off work for six weeks, although I could do some work from home on the laptop.

My local community hailed me as a hero.  However, I have never really looked at it that way.  What I did was something any parent would do to help their child.  I didn’t see it as a big thing.  The most important part of it was seeing the result: Kathryn going about a normal life and returning to work; all the things a young person should be doing.

The celebrity status did come to be a help.  Being told not to do too much for the first few weeks, it was not possible to cut the lawns or look after the garden.  The offers of help from local people were much appreciated.  Also, it was great to receive cakes baked specially for me by local ladies in the village!  One family even gave us the use of their holiday home near the coast in Norfolk.  Myself, Anne, Kathryn and her partner Luke took ourselves off for a long weekend just before I had to return to work. The weather was warm and sunny; it was a very relaxing break.

It all seems in the distant past now.  I feel just as I did before the donation.  No side effects or anything different.  Once a year I have a check-up at Leicester General Hospital.  Kathryn and I always compare test results to see how each other is doing.  She keeps a close watch on what I get up to and makes sure I’m okay.

As a family we always go out on 9th May (the anniversary of the op) for a celebratory meal.  It’s like giving our kidneys a birthday treat!

The practical aspects of the donation, including tests and the op its self, are something that hospital staff can prepare you for.  However, the emotional and psychological side of it is something different.  Looking back and remembering how ill Kathryn was becoming and then the difference my kidney has made to her is something which cannot easily be put into words.  There is that special bond between us which is difficult to describe.  To me the donation seemed a natural thing to do and I didn’t have any second thoughts about going through with it.  I would have been very upset if at any stage leading up to the op I was told that I would not be able to donate.

On a lighter note, I have a very good opening line when it comes to introducing myself at corporate events - the bit where everyone around the table says their name and something about themselves.  All the usual achievements come out – climbed Kilimanjaro, swam the Channel, restoring an Aston Martin etc.  Mine is ‘I gave birth to a half pound kidney by caesarean section’.  That raises a few eyebrows!