Family drives Elaine to fight back from the brink

THOMAS LYONS

 

The story of Elaine Muldoon from Kilcogy is that of a woman of great fortitude and the support of her family and medical team who guided her back from the very brink of life.

 

Having spent nine months in Intensive Care on life support recovering from Guillain-Barré Syndrome, a rare disorder in which the body’s immune system attacks the nervous system, Elaine is back on her feet thanks to her medics, family and her own force of will.

Her condition, Guillain-Barré Syndrome (GBS), can affect anyone. It can strike at any age and both sexes are equally prone to the disorder. GBS is estimated to affect about one person in 100,000 each year.

The exact cause of GBS is not known and researchers don’t know why it strikes some people and not others. It’s not contagious or inherited.

While most cases are non-fatal, Elaine’s strain was more severe with medics saying there is only one other recorded case in which similar symptoms presented: “It was very, very traumatic, for me and my family,” Although there is emphasis on the trauma, it still does not convey the breadth of the ordeal that the Kilcogy woman experienced.

Elaine’s symptoms started on a Thursday in August 2016. While at home, she began experiencing unexplained pains in her arms. She put up with the pain for a number of days but, by the weekend, could barely move. That Monday she went to see her GP who sent her for a CT scan in Cavan General Hospital.

Two days later, the pain had become unbearable and her GP advised her to go straight to the Emergency Department at Beaumont Hospital where she was admitted for further tests.

In the following days, Elaine underwent a barrage of tests and scans but her condition continued to deteriorate and, by Sunday, she no longer had power in her legs.

She was diagnosed with GBS - the symptoms of which usually begin in the feet and spread upwards through the body. But, in Elaine’s case, the presentation was different, which delayed her diagnosis.

 

Shut down

 

A week later, Elaine’s body began to shut down. She was moved from the high dependency unit on St Brigid’s Ward to Richmond ICU where she was intubated when her lungs stopped working.

“I was completely paralysed. I thought it was coming to its peak. It started in my arms, which is very unusual, it generally starts in your feet and works its way up. Because it started in my arms, my whole respiratory system went down straight away. All the muscles and nerves died,” she explained.

Elaine lost the ability to speak and began to communicate with her eyes. Throughout all of this, Elaine was in terrible pain and on the highest doses of pain medication possible. As a result, she spent many months unaware of what was happening.

“I had to be ventilated and had a tracheotomy. That happened on August 28, I don’t remember a whole lot until nearly the middle of January. There are some things that stick in my head. On my daughter’s 18th birthday, the nurses did the room up. I remember a Christmas in my room, but that was it,” Elaine says of the dark months when machines kept her alive in the ICU.

 

Touch and go

 

Elaine contracted pneumonia twice while she was intubated and each time the medical staff believed she wouldn’t make it. High blood pressure and extreme pain were constant companions. Between August and November Elaine’s family were twice told to prepare for the worst.

However, in May 2017, Elaine began to show signs of improvement. She remembers the first sensation was her thumb flicking constantly as her nervous system began to reboot and she was stepped down from ICU for the first time in almost nine months.

“They have no idea how I got it,” Elaine explained, “There are different strains. You can get it from a chest infection, or food poisoning. They are the two common ones, but I had neither. That threw the specialists.”

In her condition Elaine was oblivious to what was happening, but it was a different story for her family: “They were traumatised. It was horrendous for them. I was sleeping but they had to deal with the ‘not knowing’.”

Each day, hospital staff would remove her breathing tube for a time, leaving it out for longer and longer until she was finally breathing on her own again.

 

Road to recovery

 

Elaine went on to spend four months in the National Rehabilitation Hospital in Dun Laoghaire before going home with the use of a walker. She followed her physio programme religiously and went swimming to build up her strength and, today, she is fully recovered, something that medical professionals regard as nothing short of a miracle.

The only lasting impact of the syndrome is that the feeling in her feet did not return and she is left with a permanent numbness. However, that has not stopped her from driving, swimming and walking again and she is back living her life: “I’m not 100%, but I am back living my life. I am walking, swimming and driving. I still have nerve pain, but it’s not too bad.”

Other than being on a lot of medication, Elaine now lives her life much as it was before she contracted the syndrome. Looking back on the experience, Elaine points to one thing that kept her going: “My family. I wasn’t ready to go anywhere. When my body started to come back, the first thing I thought about was my children.”

Elaine’s husband, her parents and siblings have all been with her along the way. Since coming home in a wheelchair in October, she has pushed herself to the point when she now can engage in everyday pursuits: “I have physio in Cavan, I did pool work and kept up the programme. Gradually I got back, walking a bit more every day.”

Elaine said that she had to extend her thanks to Dr Margaret O’Brien, neurologist, Siobhan Tierney Pike, CNM3 in ICU, and Pedro Vasquez, senior physiotherapist in Critical Care.