He's been waiting more than six years for a organ transplant.
Now Simon Howell, from Burgess Hill, has become the face of a new campaign by the NHS Blood and Transplant seeking more donors.
Despite being seriously ill, Simon allowed the cameras in to film the daily struggle he faces.
Simon, 41, was born with a serious kidney condition, renal dysplasia. He had his first kidney transplant in 2005 thanks to his mum offering to be a living donor.
Unfortunately, in 2009, the kidney failed. Simon was added to the transplant waiting list for a new kidney and has been waiting longer than six years already.
I've been on dialysis for five years. For me, it's the most difficult part of the wait. Dialysis keeps me alive whilst I wait for a transplant; but that's all it does. I'm in limbo.
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.
This report by Tom Savvides includes interviews with Simon Howell, Sally Johnson from NHS Blood and Transplant and Carla Gair, who's had a heart transplant.
You can join the NHS Organ Donor Register here or call 0300 123 23 23