- 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
By
Caroline Scott
18:28 EST, 24 February 2014
|
08:29 EST, 25 February 2014
Ordinary,
everyday tasks are incredibly important to Dr Simon Howell. A couple of
weeks ago he took his seven-year-old daughter Sarah to BQ 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.
Scroll down for video
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.
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.
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.
‘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, butÂ
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.
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.
Bigfoot on camera? Tracker claims this is the beast
NFL star Ray Rice drags unconscious fiancee from elevator…
Run! Woman chased by ‘stampeding herd’ of rabbits in Japan
Caught on camera: Bird smashes through cockpit window
Female student jogger arrested for jaywalking
Mexico drug boss escorted to helicopter by soldiers
Inside drug kingpin’s network of escape tunnels
Tunnels used by drug kingpin to avoid capture
Captured Cartel head being presented to the media
House of Horrors victims reunite to receieve courage awards
Man dies as crane collapses at wedding in India
Act like a moron! What to do if you spot a bear
-
Used car salesman turned Bigfoot ‘hunter’ claims he is able…
-
Breaking Amish star, 23, poses in lingerie as she embarks on…
-
Cleveland House of Horrors victims reunite for moving awards…
-
Why did Foxy take a shower? Raffaele Sollecito admits he…
-
Tabasco for the British, 40% proof shot of cordiale for the…
-
‘If it seems too good to be true, it probably is’: Ex-NFL…
-
‘I’m moving it to the Tate Modern!’ What a ‘private art…
-
Kindergarten teacher suspended after two of her students,…
-
Long Island ‘wise guy’ who owns a castle is rushed to…
-
Cartel boss El Chapo was cooking breakfast for his beauty…
-
The monument to ‘corruption’: Inside opulent home of…
-
Take a tour through the tunnels of cartel boss Joaquin ‘El…
Comments (93)
what you think
-
Newest -
Oldest -
Best rated -
Worst rated
The comments below have been moderated in advance.
Nick,
Norwich, United Kingdom,
8 hours ago
It’s about time our policitians grew a pair and introduced an opt-out policy of organ donation. Ignore the lefty liberales and save some lives!! Sick of whining minorities killing people by being morally over sensitive ie. selfish.
Veronica Essex,
London, United Kingdom,
8 hours ago
I wish a donor will come up soon Simon. What a lovely family you are. I would not want my organs to go to a chronic alcoholic or drugaddict. Not someone on who it will be wasted on.
arram,
westcliff on sea, United Kingdom,
8 hours ago
it isn’t that I do not want to be a donner…but thought of parts of me going into some drunken …obese…sot..if I could say where my parts should go would be for me an added interest to think again…
Wallaceai,
Essex, United Kingdom,
8 hours ago
It should become an opt out, but even if you are on the donor register your next of kin still have to give their consent. Surely if you are on the register it should be left there. Not everyone is in a frame of mind to give consent having just lost a member of they’re family, to then later on wish they should of said yes.
My thoughts are if your organs can help other people after your death they should then be used regardless.
In the past I have never really thought much about the donor register until about four years ago when my Husband became ill. Through the condition he had which attacked some of his organs he then needed to have dialysis three times a week. Fortunately after being on the waiting list for 17 months he was fortunate to have a kidney transplant.
Sometimes it not until you go through something like this or you watch how a loved one is suffering making you feel totally helpless, you see things in a different light.
olaolaola,
somewhereinthisworld, Portugal,
9 hours ago
The sad thing is that someone has to die for people to get transplants so all you people hoping he gets a kidney soon are hoping that another person dies so this man can live.
cynie,
hants, United Kingdom,
9 hours ago
Transplant is not the answer most of the times. As a renal nurse, I would encounter patients relying all their plans on when they get a transplant. They would wait years and then when they do get one, they ended up more unwell. Remember that having that new organ would mean a lifetime of anti-rejection tablets that will lower their resistance to germs and there are other complications or side effects. Sometimes the patient will just miss 1 dose of their anti-rejection tablet and the effect will already be catastrophic. I find it really heartbreaking when a patient feels regret on having the transplant. But as I told them, if they didn’t have the transplant then they will keep on wondering about it. Atleast, they realize it’s not what its cracked up to be. It would mean a complete overhaul of their lifestyle, determination and hard work.
yawn,
uk, United Kingdom,
9 hours ago
My friend had a kidney and pancreas transplant two years ago after a week of being on the donor list. She was extremely lucky. PLEASE HELP TO SAVE LIVES AND REGISTER.
Marble11,
Cardiff,
9 hours ago
Presumed consent is coming into effect in Wales next year and I think it’s a good idea.
mrs,
uk,
10 hours ago
I am on the donor list . It seems wrong how people can say they won’t donate theirs but would accept one ! This is causing a shortage . Why should I burn mine when it can help another family ?x
thog01274,
Leeds, United Kingdom,
10 hours ago
No problem with donating my organs until I am allowed to see who would receive them ,this lovely man could be bottom of the list with rapists , drunks and murderers above him !
The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline.
Find out now