Jonny Marr, from Bargarran, in Erskine, was placed on the organ donor list when his kidneys failed at the beginning of this year and now endures nine hours of gruelling dialysis every night.
But the 24-year-old, who is suffering from Wegener's granulomatosis, a type of inflammation to the blood vessels which limits the flow of blood to organs causing damage and sometimes death, has been taken off the list because the disease is 'live' in his body again.
And while his mum Deirdre Breslin, 52, has pledged a kidney he will go back on the national list when his condition improves as he may get a quicker match.
He and his family have backed the Evening Times' 'Opt Out' organ donor campaign "150%" in a bid to increase the availabilty of organs to people like Jonny.
Jonny first discovered he had Wegener's, a rare form of vasculitis, at the age of 17, just as he was about to embark on a joiner apprentice scheme.
He explained: "I was coming home from work and falling asleep straight away.
"I had a sore neck, sore bones and joints. I thought it was just flu. But when I was walking home from my pal's house one night I started feeling drunk and I fell and burst my face open."
Doctors at Glasgow's Southern General started testing Jonny for illnesses, including cancer, but failed to spot the strand of vasculitis.
While visiting his mum, who was living in Aberdeen at the time, Jonny became unwell and was admitted to Aberdeen Royal Infirmary.
A specialist there diagnosed him with Wegener's and gave him chemotherapy and a lung biopsy.
Wegener's 'storms' the body and to date this is the fifth episode Jonny has dealt with.
He said: "My kidney transplant was supposed to be happening in February next year but now my Wegener's has come back it means I can't get it.
"It comes in storms and can be dormant for a year or two years then it just comes back.
"This time last year doctors thought mine was fine and they took me off the immune suppresents...but that's when my kidneys failed."
He is on a cocktail of medications to stave off the illness, including chemotherapy, steroids and blood pressure tablets and has a cathetar fitted to act as a filter for his dysfunctioning kidney.
And because there is no specialised unit, he must visit the Southern General for his vasculitis and for his chest and nose, the Western Infirmary for his kidneys and the Victorian Infirmary to discuss his transplant.
Medics now fear the Wegener's is seriously affecting Jonny's nose and lungs.
He is constantly coughing and being sick, resulting in stomach acid rotting his teeth.
Mum Deirdre has pledged one of her healthy kidneys to him.
Fighting back tears, the dental receptionist said: "I would give him my kidney tomorrow if I could. He needs this transplant ASAP, he could die at any time.
"No-one would ever know how ill he is to look at him because he's so cheery and upbeat. He won't let anything get him down."
Jonny's brothers David, 27, Daniel, 25, and Paul, 21, have all said they will step in and gift him one of their kidneys in the future.
Jonny also has the support of his girlfriend Heather Kerr, 24, from nearby Inchinnan. The couple, who have been together for almost three years, managed to go to music festival Rockness in June this year as Jonny underwent four manual exchanges on a dialysis machine.
Heather, a sports development graduate, said: "Rockness was just amazing. Dialysing manually was only taking half an hour out our day.
"We just really want to go on holiday again. That's the last time we've been able to do something like that."
Adding to his ordeal Jonny has now had part of his benefits cut by the Government meaning he has lost the use of a car.
He said: "I've got letters from all of my consultants to say that I'm unfit to work and I need a car for mobility and breathing.
"I constantly have to go to the hospital, often in the middle of the night.
"And some GP sitting on a board at the tribunal has undermined this and says his opinion is better than hers. It's shocking.
"They know nothing. I have to tell them about my condition."
Deirdre said: "They know nothing about the condition, that's the problem."
The family is behind our organ donor campaign saying people should be on the register automatically.
Deirdre said: "I'm behind it 150%. It should be an automatic thing, everyone should be on the register.
"We've been getting all our friends and family to sign it. The majority of people do support this."
The family are all trying to raise awareness and money for research into vasculitis too. Deirdre and Heather were recently sponsored to run the Glasgow 10k.
All Jonny can do is hope his body keeps fighting so he can get the life-saving transplant.
He said: "I just want to live a normal life. Heather and my mum keep me going but I want it to be over for them."
rachel.loxton@ eveningtimes.co.uk
