As a professional windsurfer, Simon Bornhoft had always been superfit.
So when he suffered from a lack of energy and eyesight problems, he knew something was wrong.
An optician found he had extremely high blood pressure and he was told to go straight to hospital. After tests, Simon, 52, received the shocking news that he was suffering from a disease that meant he needed a kidney transplant.
Since that diagnosis of IgA nephropathy back in 1998, he has had two transplants.
The first kidney came from his younger sister, Sally. His second transplanted kidney came from an anonymous donor and the operation was carried out last year.
Simon, who runs windsurfing courses from Hayling Island, says of his illness: ‘I was competing professionally at the time. I started feeling a bit under the weather and not quite as fit as I would expect to be.
The whole process affects everything. It feels like you’re a dead man walking
‘My eyesight started to go. I had incredibly high blood pressure because of the disease – which I didn’t know that I had.’
‘I was told it was pretty far down the line. There was no family history of it, so it was quite out of the blue.
‘I tried to cope with it, but I was told that I needed a transplant within six months.’
He managed to hold off until 2003. But that meant several years of deteriorating health.
‘You lose 30 to 40 per cent of your oxygen capacity,’ he says.
‘You can’t even walk up a set of stairs without being out of breath. You lose a lot of muscle strength and you suffer from gout and cramps. You can’t sleep.
‘Your sensitivity to colds and flu is much greater.
‘The main thing that most people suffer with is tiredness. You feel very run down and very low. Every day is just a fight to keep going.
He adds: ‘I was very lucky in that I seemed to be able to put up with the condition. I made myself keep working and travelling.
‘I just wanted to make the most of whatever I had because I was terrified of going on to dialysis and having a transplant.
‘The whole process affects everything. It feels like you are a dead man walking.’
Eventually, Simon had to have a transplant – and that’s where his sister Sally came in.
‘It got to a point where I had to go on dialysis or I wouldn’t be around. Then you are put on the transplant list,’ he explains.
‘My sister, amazingly, decided to donate a kidney. She proved to be a very good match.’
He said his transplant was a very difficult time for the family.
‘My father died the week before I was due to have the transplant. It was a very traumatic time. But the transplant was successful.
‘To all intents and purposes it means that you are back to normal. It’s like you get a new set of batteries.
‘I tried to make the most of the amazing gift that Sally had given me. I tried to carry on as normal and most people didn’t even know. It does give you a new life. It’s incredible.’
Simon says he finds it heartwarming that his sister would do something so generous for him.
‘It’s amazing how Sally has recovered. She’s a long-distance runner and has had two kids. She feels incredible.’
He adds: ‘We were close before, but we are exceptionally close now.’
On average, people suffering with an auto-immune disease can only last so long before they need another transplant.
Simon explains: ‘For the last three years of living with that first kidney, I was living with renal failure again.
‘You are in a state of complete dysfunction. Your body is falling apart. If anything, it was worse second time around.
‘For 18 months prior to the second transplant I was on the waiting list. During that whole time I was working and running courses both in the UK and overseas.
‘I was only managing to do that thanks to the hospital team at QA. They were fantastic. The whole renal department is something we should be proud of locally.’
In June last year, Simon had another kidney transplant. He was put on the waiting list and a match was found.
He reflects: ‘It’s been very good so far, 18 months in. It’s given me the opportunity to have a second life. It’s pretty amazing.
‘I feel very healthy. But your guess is as good as mine as to how long this will last.
‘You live by your results. I am in and out of hospital every couple of months for check-ups. If there is anything that seems to be a problem, then I’m in more often.’
Simon is on daily medication for his blood pressure and anti-rejection medication to allow his kidney to work and to prevent his body from rejecting it.
Now the dad-of-three wants to raise awareness about organ donation.
‘It can massively change people’s lives. For people to realise they can help people both now and when they are no longer around is really important.’
IgA nephropathy, also known as Berger’s disease, is a kidney disease that occurs when an antibody called immunoglobulin A (IgA) lodges in your kidneys.
This results in local inflammation that, over time, may hamper the kidneys’ ability to filter waste from your blood.
IgA nephropathy usually progresses slowly over many years, but the course of the disease in each person is uncertain.
Some people leak blood in their urine without developing problems.
Some eventually achieve complete remission and others develop end-stage kidney failure.
No cure exists for IgA nephropathy, but certain medications can slow its course.
Keeping your blood pressure under control and reducing your cholesterol levels also slow disease progression.