Four times every day 41-year-old Simon Howell faces a battle for life.
For Simon, who has kidney failure, has to undergo four life-saving dialysis sessions each day of the week.
“Dialysis keeps me alive whilst I wait for a transplant; but that’s all it does,” said Simon. “I’m in limbo.”
Simon, who lives with his wife Anita, also 41, and children Sarah, eight, and three-year-old James in Burgess Hill, has been waiting for a new kidney for over six years.
He was born with a serious kidney condition - renal dysplasia - and had his first kidney transplant in 2005 after his mum offered to be a living donor.
However, in 2009, the kidney failed. Simon was added to the transplant waiting list for a new kidney - and has been waiting ever since.
Simon’s day is dominated by his illness. His daily dialysis sessions leave him fatigued and he also faces constant uncertainty for the future as he and his family live in hope that a suitable donor organ will become available.
He said: “My family and I are on a roller coaster and like a roller coaster, I can’t see the twists and turns or how it will end. But a transplant would completely transform my health and all our lives.
“Waiting for a transplant is not like waiting for anything else. You don’t necessarily get nearer to the top of the list the longer you’ve been on it. It depends on many factors including who is in greatest need and who is the best match for an organ. It’s an endless wait with no ETA.”
Simon is one of 65 people in West Sussex who are currently waiting for a transplant - and is among 20 of those who have been waiting for years.
But he is still at the moment one of the ‘lucky’ ones - 32 people from West Sussex have died between April 2011 and November 2015 because of a shortage of organs.
He spoke out this week after a new organ donation campaign by NHS Blood and Transplant - ‘The Wait’ - which highlights the plight of people needing new organs, and the shortage of them.
Simon features in a campaign film showing a day in the life of a patient. He allowed cameras into his Burgess Hill home to record the reality of just one of the many days he has spent waiting for a suitable donor organ in a bid to show just how difficult life is on the transplant waiting list.
Sally Johnson, NHS Blood and Transplant Director of Organ Donation and Transplantation said:“Simon’s journey has already been a long and difficult one and while we are doing everything we can to make sure he gets the transplant he needs, the NHS cannot do this without help from other people.
“Sadly though, Simon is not alone. Statistically, more than one in ten people on the waiting list will die before they get the transplant they need. For some organs, the picture is significantly bleaker. More than one in four people waiting for lungs will die.
“I’d ask you to imagine how you’d feel if someone close to you was waiting for a transplant; their whole life on hold, hoping someone will donate to save them. I’m sure we’d all hope an organ would be available to help someone we love - so shouldn’t we all pledge to be organ donors so more lives can be saved?
“If you haven’t told those closest to you that you want to be an organ donor, then please do it today. Tell them you want to be an organ donor and record your decision on the NHS Organ Donor Register.”
The numbers waiting in West Sussex show only a small part of the UK picture. Of the almost 7,000 patients currently on the UK’s transplant waiting list, 30 per cent have been waiting more than two years.
Almost 49,000 people in the UK have endured the wait for an organ transplant in the last 10 years and over 6,000, including 270 children, have died before receiving the transplant they desperately needed.
l To join the NHS Organ Donor Register go to organdonation.nhs.uk or call 0300 123 23 23 – Now is the #TimeToSign.