'I know my Daddy's so ill he might die': A heartbreaking account of how the organ donor shortage has left this father of two with just a one in 10,000 chance of survival
- Father-of-two Dr Simon Howell, 39, from London suffers from kidney failure
- 10,000 Britons are waiting for a donor organ. Most of them for kidneys
- To join NHS Organ Donor Register go to organdonation.nhs.uk
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Ordinary, everyday tasks are incredibly important to Dr Simon Howell. A couple of weeks ago he took his seven-year-old daughter Sarah to B&Q and then out for a burger.
'It sounds unglamorous,' he says. 'But for me, it was magical. The whole time I was thinking: "This is 'Daddy time' she'll remember for ever." '
Simon, 39, suffers from kidney failure and desperately needs an organ transplant - so days when he has the energy to play with his children are rare. A few years ago, he was well enough to carry Sarah on his shoulders. Now a good day means making it to a nearby playground with his one-year-old son, James, and the help of his wife Anita.
Dr Simon with his wife Anita and their two children James, 18 months, and Sarah, seven
About 10,000 people in the UK are waiting for a donor organ. Most of them - 6,000 - are, like Simon, waiting for kidneys. A highly qualified clinician, his speciality is histopathology - the microscopic examination of tissue removed during surgery.
Bringing his medical knowledge to his own prognosis, he's grimly realistic about his chances: he estimates the odds of finding a suitable donor in time are about one in 10,000.
The gradual failure of his kidneys has robbed him of the life he planned for his family and a promising future in medicine.
When his own kidneys began to fail he immediately thought of the kidney patients he'd looked after as a junior doctor.
'They were often wheelchair-bound, exhausted and grey,' he recalls. 'I remember thinking: "I don't ever want to be in that state..." '
The numbers of people waiting for kidney transplants is rising, mainly due to an increase in type 2 diabetes.
The kidneys remove waste products from the blood. When they fail, waste accumulates in the body, gradually bringing on symptoms including nausea, itching, gout, fatigue, poor concentration and memory loss.
The couple, pictured in 2004, have been married since 1999
It feels like being in a full astronaut suit, Simon says.
'It's as if there's a barrier between me and the world. Everything feels heavy and dulled.'
He now can't remember what it feels like to be well. But looking back, Simon suspects he's never been completely healthy.
He now can't remember what it feels like to be well. But looking back, Simon suspects he's never been completely healthy.
As a child, he suffered from reflux, when urine backs up towards the kidneys instead of flowing down to the bladder. Aged four, he underwent surgery on the tubes leading from the kidneys to the bladder; it was noted that his kidneys were 'small' and he had annual blood tests to check their function.
But he had no symptoms or problems, until he switched from child to adult services at 18. His new consultant told him: 'At some point, your kidneys will deteriorate and you'll need a transplant.'
'I assumed I'd be 50 or 60 by then,' Simon says. In fact, the symptoms were already starting to creep up on him.
He remembers going for a walk with Anita, then a student nurse - they were both 22 and working at the Royal Free Hospital in Hampstead, North London - 'I was limping with pain,' he says.
It was gout, caused by a build-up of uric crystals, a waste product made in the body. Simon was also suffering from recurrent headaches, exhaustion and memory loss, as his kidneys struggled to clear urea, another waste product.
It was gout, caused by a build-up of uric crystals, a waste product made in the body. Simon was also suffering from recurrent headaches, exhaustion and memory loss, as his kidneys struggled to clear urea, another waste product.
'One day it could be someone you know or love - or even you - in need of a transplant. If you'd be willing to accept an organ, shouldn't you be willing to give?'
At the time, he put the symptoms down to exhaustion.
'As a junior doctor, you work 100-hour weeks and don't sleep much,' he says. 'I remember popping Nurofen every day and not really putting two and two together.'
The couple married in 1999. But by the age of 29, Simon was struggling to get through exams and found it increasingly difficult to manage at work. His consultant advised modifying his diet, but within a month, he was feeling constantly unwell: 'nauseous, forgetful - like having an all-day hangover.'
Blood tests showed his kidneys were working at less than 5 per cent which meant he'd reached end-stage renal failure. He was going to need a kidney transplant.
Blood tests showed his kidneys were working at less than 5 per cent which meant he'd reached end-stage renal failure. He was going to need a kidney transplant.
'Chronic renal failure has no symptoms until close to end stage,' says Simon.
This means most patients suddenly have to face dialysis - where the work of the kidneys is performed by a machine - and needing a transplant at the same time.
Simon's brother, Jonathan, and father were the wrong blood group so couldn't donate; fortunately, his mother Linda was a good match. The operation took place in May 2005 at Guy's Hospital in London. Simon chose the hospital because he didn't know anyone there, but remembers feeling 'an extra friendliness' from the other doctors because he was one of their own.
'They were that little bit more open - and a little bit more sad for me. They were thinking: "That could be me on the operating table." '
Afterwards, Simon and Linda lay in neighbouring beds. Despite the considerable pain, he says he felt immediately 'clean and well'.
'Like a glass fresh out of the dishwasher,' he says. 'Not just clean, but sparkling bright. Looking back, I hadn't known mental clarity like that since I was a child.'
Dr Simon and his daughter Sarah
As soon as he was well enough, Simon and Anita treated themselves to a holiday at Disney World.
The couple had always wanted children, but a known effect of kidney failure is a lower sperm count. So when she realised after their holiday she was pregnant, Anita says, 'everything just clicked into place'. Sarah was born on February 25, 2006.
The couple had always wanted children, but a known effect of kidney failure is a lower sperm count. So when she realised after their holiday she was pregnant, Anita says, 'everything just clicked into place'. Sarah was born on February 25, 2006.
But over the winter, a prolonged series of viral infections hospitalised Simon. At the time it was put down to the drugs he was taking to stop the donor kidney being rejected. In fact, only months after his transplant, Simon's new kidney was also beginning to fail.
Unable to work, he had to take medical retirement in 2009. After 12 years, his NHS pension amounts to just £500 a month, supplemented by employment support allowance. The couple sold their home to pay their debts and now live in a rented house in Burgess Hill, Sussex, paid for by Anita's mother, Caroline.
An unexpected joy has been James, a 'surprise baby' born in August 2012.
'I have no libido, so I didn't think we had it in us,' says Simon.
'This is the best medicine. I'm very conscious this is precious time with my children and I try to prioritise the few good hours in the day so they get the lion's share of my energy.'
After his donor kidney failed, Simon was put on dialysis. At first, he had haemodialysis, where the blood is removed and cleaned via a large machine - involving several hospital trips each week - but after six months he developed a complication where the blood flowed the wrong way in his hand. He now has peritoneal dialysis at home. Here a special fluid, which is introduced into his abdomen via a permanent tube, does the work of dialysis. Four times a day, Simon drains away two litres of fluid, and fills it up again with a fresh solution. The whole thing takes about 40 minutes.
No dialysis is particularly efficient - it provides him with 5 per cent function, with another 5 per cent coming from the donor kidney.
It's life support rather than a long-term solution, which can be used for up to five years. After that, there tends to be complications such as peritonitis (an infection of the abdomen's lining).
Simon has already been on the dialysis for three years, and his options are limited. He desperately needs a donor organ. Anita and his mother-in-law both offered kidneys, but neither is a match.
Currently, three people die every day while waiting for a transplant. Although many people say they support organ donation, they haven't actually signed up to the donor register.
'Statistically, you're much more likely to need an organ yourself than to be a donor,' says Sally Johnson, director of Organ Donation and Transplantation at NHS Blood and Transplant.
'One day it could be someone you know or love - or even you - in need of a transplant. If you'd be willing to accept an organ, shouldn't you be willing to give?'
But, as the Mail has highlighted previously, it's vital that those who do sign up tell their loved ones what they've done. Studies show that if a family isn't aware of a relative's wishes, it's much harder for them to say yes, which means a huge number of organs are going to waste.
It is a truly wonderful gift, says Simon. 'Even as a hospital doctor, I never realised that one donor can transform the lives of so many.
Dr Simon, pictured with his children Sarah and James, is still hopeful a match will come up for him
'As well as kidneys, the heart, pancreas, small intestine, liver and corneas can all be used. And clearly people find comfort in knowing their loved one has gone on to transform the lives of up to nine other people.'
Simon is still hopeful a match will come up for him. 'I was given a 40 per cent chance of making it the next five years. And I've already now made it two lots of five years, and I have young children .'
One of the hardest things for the couple is not being able to give their children the life they'd planned.
One of the hardest things for the couple is not being able to give their children the life they'd planned.
But the 'silver lining' is that Simon fully appreciates what he has.
'I'm conscious of desperately trying to create memories and teaching the children everything I know while I'm still here.'
Anita adds: 'I want Simon with all my heart to be there to see the kids go to uni and get married, but I don't expect it.'
Simon does the school run almost every morning. Recently when he felt too tired to go, Anita took Sarah instead. After a little while, Sarah said: 'Daddy's really ill, isn't he Mummy? You know what I mean by that? Daddy might die...'
And then, before Anita had a chance to think of an answer: 'But we're praying the doctors will find a new kidney for Daddy soon.'
To join the NHS Organ Donor Register go to organdonation.nhs.uk or call 0300 123 23 23.
Read more: http://www.dailymail.co.uk/health/article-2566999/I-know-Daddys-ill-die-A-heartbreaking-account-organ-donor-shortage-left-father-two-just-one-10-000-chance-survival.html#ixzz2uI4ouNni
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