A Northern Ireland woman has cheated death after waiting more than six years for a double lung transplant.
Libby Nash was so close to death by the time she got her operation that she had even made plans for her own funeral — discussing the event in detail with her husband James.
But now the 28-year-old, from Randalstown, who was suffering from end stage lung failure as a result of damage caused by cystic fibrosis, is recovering at home after medics used pioneering technology to keep her alive until an organ match was found.
Just three months on from the gruelling operation, Libby is now looking forward to the honeymoon she never had, and is even hoping to swim with dolphins during her trip to America.
Libby was rushed to the City Hospital in Belfast on June 11 this year and a machine called a Novalung was used to keep her alive, with specialists from Germany flying to Northern Ireland to assist clinicians here.
Dr Gerard Meachery, a consultant in respiratory transplant medicine at the Freeman Hospital in Newcastle-upon-Tyne, where Libby received her new lungs on June 29, said she is lucky to be alive today.
“Libby is a remarkable girl who faced huge challenges prior to her transplant,” he said.
She really is incredibly lucky. As a bridge until the transplant we were able to use a device called the Novalung.
“This can’t be used in all patients, but in those we can use it on, it gives them a little bit of extra time.
“In Libby’s case it was the first time the Novalung was ever used in Belfast and it got her through her period in intensive care.
“I don’t believe she would be alive today if we hadn’t used the Novalung. This really is a last-ditch piece of technology and it is not something you can use indefinitely.
“That is why it is so important that people donate organs |because despite all the wonderful work done by the team at Belfast and in Newcastle, she would not have survived without the transplant.”
Libby kept a diary for the Belfast Telegraph during her wait for a transplant as part of the newspaper’s Sign Up, Save A Life campaign to encourage more people in Northern Ireland to donate organs.
Dr Meachery said it is imperative people sign the NHS Organ Donor Register. “Libby had a long wait for her transplant,” he said. “Some people can go on the list and get the call within a few weeks, but then there are others who wait years and, unfortunately, not everyone gets their operation in time.
“Libby was unfortunate because it was more difficult to get a match because of her size and tissue.
“She did experience difficulties after the surgery, including infection and fluid on the lungs, but she kept her spirits up and never complained.
“Libby has a wonderful laugh and that kept me going.
“There are times when you treat someone like Libby and then go into another room where a patient isn’t doing so well and you have to remember people like Libby.
“That is what keeps me doing my job.”
He added: “The central message, however, is none of us could do our job if it weren’t for the donors and their families.
“That’s why we need as many people as possible signing up to the organ register.”
Health Minister Edwin Poots said he was delighted to hear Libby is recovering from her operation.
He said: “I visited Libby at her home last year and saw at first-hand the difficulties and stress that waiting for a transplant caused.
“I would like to pass on my very best wishes to Libby and I hope she continues to progress back to good health.”
Mr Poots said her story highlights the life-changing impact a transplant can have on a person.
“Despite big improvements in organ donation in recent years, there are around 300 people in Northern Ireland still waiting for a transplant,” he said.
“I would urge all those who have not already done so, to sign the Organ Donor Register and discuss their wishes with their family and friends.”
To sign the NHS Organ Donor Register telephone 0300 123 23 23 or text SAVE to 84118
The Novalung Interventional Lung Assist device is a ventilator that helps oxygenate and remove carbon dioxide from the bloodstream.
It is used in patients with acute lung failure, like Libby, where their lungs are unable to do this crucial process themselves.
Patients are linked up to the machine with a line coming from an artery, either from the neck or the groin.
Blood flows from the patient, driven by their heart function, into the machine where carbon dioxide is removed and oxygen is added before it is returned to the patient’s body.
The machine was developed in Germany and has only been used a number of times in Northern Ireland.
It was used for the first time in a hospital in Northern Ireland to keep Libby alive as transplant co-ordinators in|England searched for a suitable set of lungs.
After six years waiting for a double lung transplant it seemed like time was finally running out for 28-year-old Libby Nash.
Born with cystic fibrosis (CF), the condition had taken such a toll on her lungs that the operation was her only chance of survival.
But her small size — and the small number of donor lungs — meant it had so far been impossible to find a suitable match.
The turning point came on June 11 this year when she was rushed to Belfast City Hospital by her husband James. “I woke up and knew something wasn’t right so we phoned the CF clinic at Belfast City and they told us to come straight up to the hospital,” she explained.
However, on the drive from their home in Randalstown, Libby suddenly stopped breathing.
James recalled: “We were going down the M2 and her head just fell forward. She wasn’t breathing; it was a hairy drive.”
At the hospital doctors tried a variety of methods to increase the oxygen levels in Libby’s blood.
“Nothing was working and they came and spoke to us about whether we wanted them to resuscitate Libby,” explained James.
“They told us that there was no turning back if they had to intubate her.
“It was the first time through everything that I actually thought about planning her funeral.
“We had been waiting for six years for the transplant and the thought of losing her at this stage was devastating.”
Libby explained: “I told James I wanted a white coffin. I had even picked the songs I wanted at my funeral.”
James continued: “But Libby just didn’t want to die. She told them to do whatever they had to.”
Eventually a decision was made to use a Novalung ventilator in the hope it would buy Libby some extra time until a donor was found. But while her condition improved after she was attached to the machine, it was far from a permanent solution.
“The longer I waited, the more I started to think this isn’t going to happen,” Libby explained.
“I was thinking: ‘What had I done to deserve this? Was I a bad person?’ I was starting to think that maybe I should just give up fighting.”
James added: “I remember we had a particularly emotional night and Libby and I spent most of the night talking.
“The next morning I went to the family room to get some sleep and a nurse came in and told me they had got the call — the transplant was happening.”
Libby said: “I knew things could still go wrong, so I didn’t want to get my hopes up in case it didn’t go ahead.”
But within hours Libby was on a flight to Newcastle-upon-Tyne.
“James couldn’t come with me. The plane was so small they had to build a special bed for me to get on with the Novalung,” she said.
“When we landed the doctor rang the hospital to see where we should go and they told him to bring me straight to theatre.
“You normally have to have tests and a shower and pre-ops before your transplant, so that’s when I knew it was really happening.
“I had complications after the surgery, but the operation went well and I am home now.
“I know how lucky I am. My best friend, who was my age and had CF, died the same day that I came home.
“Before the transplant I got about in a wheelchair and I needed oxygen a lot of the time. Now I can walk my dog and am going to start swimming.
“We can even go on honeymoon now. Before, our lives revolved around my condition and waiting for the phone call that a donor had been found.
“We are going to go to Disneyworld. We haven’t booked the flights yet, but I have booked a swim with dolphins.
“I know I wouldn’t be alive today if they hadn’t used the Novalung and if the doctors at the City and Newcastle hadn’t worked so hard to keep me alive long enough to get my transplant.
“I also know I owe my life to the family of the donor. I don’t know anything about them yet, the doctors told me it is too early for that, but one day I hope to write their family a letter to thank them.
“The way I see it is, if you are willing to accept a transplant, then you should be willing to donate. The person who donated their lungs and their family who gave the permission have saved my life. I have a chance at living now because of them.”