A woman has come back from the brink of death in a coma – in which she HEARD doctors asking permission to turn off her life-support system
Jenny Bone, 40, fell critically ill after contracting a severe form of the rare nerve condition known as Guillain-Barre Syndrome.
It left her paralysed but doctors had not diagnosed it and summoned her husband John fearing she was brain dead and would not survive.
Although she appeared unconscious Jenny could hear what was being discussed – but was unable to speak because she had undergone a tracheotomy.
She listened as medics asked John, 58, if he agreed to ending her life.
Despite having previously agreed between them that if either ever had to make the agonising decision they would say yes he refused.
He insisted on giving Jenny more time – and shortly afterwards she was diagnosed with
Medics realised she had a chance of survival and kept her in the coma until she began to regain consciousness the following month.
She spent the next two month recovering but says she was in intense pain and suffered hallucinations of giant spiders because of the painkillers she was on.
At one point she even thought that medics were “out to kill her”.
But following a miraculous recovery the mother-of-one is now back at work as a government building surveyor and recently took part in a 5km charity run.
She says she was saved by her strong Buddhist faith which kept her going even as her life was on the line.
She said: “I wasn’t scared. I chanted in my head and prayed for a good outcome.”
Jenny’s nightmare began a year ago when she found herself sitting on the floor of an empty tower block unable to get up.
She had pins and needles which had progressed from her feet up to her legs and knees.
She managed to struggle to her GP who immediately sent her to the Luton and Dunstable Hospital with a letter saying he thought she had Guillain-Barre Syndrome.
Her husband claims the note was missed by the hospital and says if they had seen it much of what happened to her could have been avoided.
She was finding it difficult to breathe and instead was told she probably had a chest complaint.
But she stopped breathing during the night, suffered a hypoxic brain injury and cardiac arrest and woke up in intensive care and paralysed.
She was put into a medically-induced coma, on a life support machine as she was unable to breathe by herself.
At that stage doctors had not diagnosed Guillain-Barre Syndrome and although Jenny was unable to move or speak she could hear what was happening around her.
A few days after her arrival she heard a medic ask her husband: “What are your wife’s wishes about being kept alive on a ventilator.”
Jenny said: “People expect me to say I was really frightened but I was actually very much at peace with it.”
“I am pleased that my husband did tell the doctor my wishes that I did not want to be kept alive on a ventilator if I was not going to have any quality of life.
“I knew the right thing would happen in the end. I was actually very surprised that my husband told them to not switch off the life support machine.
“Like most couples, we’d had the conversation about what we would do if that sort of thing happened to the other person, and I said I would like it to be switched off.
“So he actually went against my wishes, but I am obviously very pleased he did that now.”
Jenny, who is a devout Buddhist, added: “I feel that my faith kept me strong and got me through, I was chanting in my head and praying.”
Doctors diagnosed a severe form of Guillain-Barre Syndrome which meant her body did not respond to any pain or reflex tests or even brain tests.
Jenny, from Leighton Buzzard, Beds., said: “Every nerve in my body was expiring. It was incredibly painful.
“I had no reflexes and my eyes were fixed and dilated. You can’t respond to pain stimulus because you’re paralysed.”
Jenny slowly recovered over the next two months in hospital – before finally going home in June.
To begin with she needed a zimmer frame to walk her five-year-old son David to school.
A year after her collapse, she has returned to full-time work and completed a 5km charity run – with the aid of a stick – and proudly come in last to cheers from wellwishers.
She still suffers with pain, especially in her feet, and has short term memory loss and sometimes stumbles over her words.
Husband John, a local councillor, said: “To hear your wife complain in the morning of pins and needles and then 48 hours later to be the state she was was just devastating.
“It was a bolt out of the blue when they first asked me about switching off the life support.
“She had only been taken ill on the Friday and on the Monday morning I was asked to go into a room.
“I knew that meant whether my wife was dead or she was close but I said straight away it was far too soon.
“They basically said they don’t know what’s wrong with her and she wasn’t responding.
“But it was just too soon to even consider that. Then a few days later they asked me again I was sitting at her bedside holding her hand.
“I think it should never have been done in earshot of her. But to find out that she had heard what was said was just chilling. She remembered it word for word.”
Jenny said she looked back on what happened as an ‘amazing experience’.
She said: “It made John virtually a single parent overnight. But I also realised how many friends we have and what’s important in my life.
“With Buddhism everything is an opportunity for learning and development.”
She added: “My response has always been that I am not inspirational I am just a stubborn person getting well in the only way I know how.
“Maybe that is the definition of inspirational.”
Gill Ellis, a support officer from Guillain-Barre syndrome charity Gain, said: “The condition does not affect your brain.
“Patients often have awareness of what is going on around them but they cannot do anything about it which can be very frustrating.”
Guillain-Barre is a serious condition in which the body’s immune system attacks part of the nervous system.
Usually starting with a small infection, such as a cold, the peripheral nervous system is attacked – the network of nerves that lie just outside the central nervous system.
This includes the motor nerves which the brain uses to control the muscles – which in many cases can leave the sufferer completely unable to use their limbs.
In severe cases the chest muscles can be so affected that a patient is unable to breathe without a ventilator and needs to be fed through a tube.
The condition affects around 1,500 people in the UK every year but 80 per cent make a full recovery within three years.
Charity Gain runs a 24-hour support line which is 0800 374803 in the UK and 1800 806152 the Republic of Ireland.