Danika’s battle with rare illness

“Eighty-five per cent,” says Danika McManus, estimating how much she’s back to her old self. It’s a minor miracle she’s come this far. Unable to breathe, unable to speak, induced coma, Intensive Care Unit, paralysis, pneumonia - all the news Danika’s loved ones heard of her illness when the exotic sounding Guillain-Barré Syndrome struck, must have convinced them that there would be no path to recovery.
Even after Danika managed to survive Guillain-Barré’s worst ravages, had the prognosis given by the medical experts come to pass, she would still be receiving Intensive Care on the other side of the world. However she’s back home in Newtowngore, keeping positive, attending physio, going for walks, building up her strength in search of the remaining 15%.
Last June the 26-year-old was half-way through a year-long visit to Sydney, when the illness she’d never heard of before took hold. Initially its introduction was gentle with flu-like symptoms.
“I thought nothing of it; thought I was coming down with something,” recalls Danika. “One day in work I felt really weak like I was going to faint.”
She left her bar job early, and as her symptoms worsened, reluctantly she called to the Emergency Department at Prince of Wales Hospital, which was just a five-minute walk from the apartment she shared with her sister Karen and nephew Kailen.
“Everything was sore, the first thing for me was the weakness in my legs. I could still walk but I felt weak and I had a serious headache - I couldn’t open my eyes it was that bad.”
Her symptoms were put down to the combined effects of a virus and dehydration. She was put on a drip for a while, given a sick cert and sent back to an empty home - Karen and baby Kailen had gone home to Ireland.

 

'Just a virus'
The next day she felt “weaker and weaker”.
“Everything just ached,” she said conveying the dull bruising pain of sickness. This was compounded by nausea, vomiting and incessant pins and needles in her hands and feet. Collapsed on the couch, unable to rest, the headache persisted mercilessly, despite the painkillers.
On the phone to her worried parents, John and Bríd, she assured them that it was like the doctor said, “just a virus”. Their concern stemmed from the fact that Danika wasn’t one to complain, or bother a doctor unnecessarily. In fact she had never been healthier, as in recent years she had lost an incredible seven stone through a dieting programme.
Encouraged by her parents, Danika returned to the Emergency Department that night. Sadly the diagnosis was the same, albeit after the doctor made the strange request for her to drink a glass of water.
“So I drank a glass of water - and she goes, ‘You’re fine, there’s nothing wrong with you’. It’s just a virus and I need to just rest. Again after a couple of hours in Emergency she sent me home.”
Danika’s health worsened still further the next day, but having been told twice it was nothing to worry about, she felt compelled to suffer in silence.
“I was getting worse, but I thought they are going to think - there’s something wrong with this one - if I’d went in again. So I suffered in my house that day. By Friday morning at half seven, as close as I was to the hospital, I had to phone an ambulance because the power in my legs had nearly completely gone. I had to crawl to the front door to answer it for the paramedic. At that stage I was thinking - what is happening?”
Admission to hospital didn’t immediately bring the medics any closer to solving the riddle of what was wrong with Danika. When the intensely painful lumber puncture procedure offered no more clues than the many blood tests that came back clear, they passed her from Emergency up to the Neuro Ward. More tests; no answers.
“The first five days they weren’t 100% clear what it was. Nobody was mentioning Guillain-Barré to me.”
Suspecting there may have been a problem with Danika’s antibodies, they gave her five courses of blood transfusions called IVIG over five days. All the while her condition was deteriorating. Even communicating with her deeply-concerned family and friends back home was becoming impossible. She literally lacked the strength to either hold the phone, or the breath to speak.
“I remember Mam rang me and I said, ‘Mam I think this is my last phonecall to you that I will be able to make because I can’t hold the phone any longer and I can’t talk’.
“It was the hardest thing to have to say because I didn’t want her to be worrying, because she was so far away, but I knew that if she was ringing me I wouldn’t be able to answer the phone and she would be worrying more.”

Coma

There was plenty to worry about.
“They said that within five days [from the start of the transfusions in the Neuro Ward] I should be back to pretty much normal. Within the five days, the power of my legs completely went first. With Guillain-Barré it starts with your legs and works up your body. My legs were the first thing to go and then my arms. It completely went then. It affected my face - it was like my face was paralysed, I couldn’t smile properly, I couldn’t close my eyelids properly.”
Even though she was having breathing difficulties, the doctors were convinced her lungs were fine.
“They were just trying to calm me down. They thought I was anxious, but I was trying to explain to them, ‘No I actually can’t breathe’. So then they were giving me the oxygen mask to try to help me.”
Finally tests confirmed that Danika’s lungs weren’t functioning, which was a crucial clue in arriving at the correct diagnosis. She was rushed into Intensive Care as half a dozen doctors discussed the major procedure they were going to undertake.
“I remember looking at them thinking what the hell is this for? I didn’t know I was in ICU at this stage. They said I was going to be put to sleep, but I thought they were just going sedate me as they would when you’re going to go in for an operation - that kind of sleep.”
Danika wouldn’t find out for another three months that the doctors actually induced a coma for a number of hours so that they could put her on life support.
“I woke up that day. I was completely powerless and I had a tube down my mouth to help me breathe. So I woke up not knowing any of the doctors or nurses, I had no family there and this was the first day I couldn’t talk because of the tube being put down my throat, and I couldn’t move. So I couldn’t communicate in any way, and when they were telling me it was Guillain-Barré I had no idea what it was, what the outcome was going to be or anything - that was the scariest day for me - the first day in ICU.”

Three days after Danika’s horrifying introduction to ICU she was heartened by the arrival of her family. For her shocked family, they found it deeply distressing.

“Your child is always a child in your eyes, regardless of their age,” says Bríd, “and to see a 26-year-old connected to so many machines, so many wires, feeding tubes, a life support machine - all connected to your child - you just want to take them up in your arms and hug them, but that wasn’t possible.”

Frustration

“For five weeks in ICU I had no movement - no nothing; couldn’t talk, the way I was communicating was one of the nurses had made up a huge letter board and whoever wanted to communicate with me would point to the letters and I would nod to them when they got to the right letter, then they would make the sentence that way.
“Out of losing the movement and everything the worst thing was to not be able to communicate, because it was very frustrating. If you wanted to say the simplest of things, you had to go through that.” Bríd insists that during this time Danika remained incredibly positive.
“One of the messages we spelled out from her nods was to telephone one of her friends to wish them a happy birthday - we couldn’t understand how she would know what day let alone date it was. But she was so positive we only saw tears twice, and one of her tears was when her professor told her she would be in ICU for 12 months.”
The doctors tried another series of transfusions, which in some instances can help with Guillain-Barré, but for Danika it did nothing.
“It was like putting water through my blood,” she recalls.
Doctors persisted, and tried a plasma exchange, yet another form of transfusion. With this procedure hope arrived on week five in ICU. More precisely it was Bríd’s birthday and Danika was just after receiving her second of seven courses of plasma exchange. A nurse was wheeling her bed out onto the ICU balcony so she could join with her family in the birthday celebrations, when Bríd noticed Danika’s fingers on her left hand move.
“I could just move my fingers off the bed,” says Danika, “it wasn’t a big movement or anything, but it was the first time I could move any part of my limbs in three months.
“I don’t think I even realised myself that I had moved my hand. Mam goes, ‘You’re just after moving your hand, do it again.’ She must have asked about ten times to show that I was doing it. When that happened I remember saying to myself - right we’re on the road now.”
“That was the best birthday present ever,” recalls mum, Bríd. “Previously we thought we’d seen movement and we’d go home in great humour but when we went in the next day there would be no movement. This was why on my birthday I kept saying, ‘Show us that again’, so much so that every doctor and every nurse, everybody, even strangers got to see the hand move up!”

'Best day ever'

Progress was slow, but steady.
“Another month and a half after that I could move my hands, still no movement in my legs or anything, my face started to come back as well, so people could lip read me better and I could make more facial expressions, like smiling. Gradually over the three months I was weaned off the life support, so it started with being taken of it for five minutes and then put back on it, to strengthen up my lungs. Within the three months it was longer and longer until I was off it all day and only on it at night time. Two or three days before I got out of ICU they took the tube out - they were afraid because I was on it for so long that I was going to have speech problems, because I might have damaged my vocal chords, but the minute the tube came out I talked as normal - it was the best day ever.”

John rang Bríd back at Karen’s apartment so Danika could surprise her.

“I said ‘Hi Mam’, and that was the first time I talked to anyone when they took me off the life support. For the first few days I was just saying hello to everyone, even people I didn’t know; I was just saying hello to them for the sake of talking.”
After rebuilding the strength in her jaws to be able to chew and get used to swallowing again she was reintroduced to food. Days later she was deemed strong enough to start rehab in the Prince of Wales Hospital. It was September, and even with three to four hours of physiotherapy a day she was told to expect to be in rehab well into the New Year.
“When I went to rehab I kept thinking about them [road safety] ads - you know you see people walking between the [parallel] bars - holding on - I had to do all of that. When I was moved to rehab all I could do was move my arms, talk and eat, but I couldn’t walk, I was still in a wheelchair.”
Even sitting up on the edge of the bed required support from physios, but she managed it alone within the first few weeks, and then progressed to taking a few steps.
“Every day the steps would get further and further. I started with a frame, then I went down to a Zimmerframe, then a walking stick, then walking on my own. That all took three months. Just before I came home I started walking without an aid.”
Having already confounded the doctors’ assessment that she would be in ICU for over a year, she now exceeded the expectations of the rehab professionals. Progress was so rapid that she managed meet her own target of completing rehab in time to fly home to Ireland on her original return ticket on December 5.

Common

Reflecting on the last eight months, Danika still doesn’t know what caused her to fall prey to Guillain-Barré Syndrome. It’s not hereditary; she was told that it became more prominent after the flu shot became available, but she had never received the jab.
“Maybe a chest infection,” she speculates, “that just hadn’t been seen to in time, and just started fighting my own body.”
Although the little known syndrome reportedly affects one in every 200,000, Danika suspects it is much more common, having heard of numerous examples from within a “ten-mile radius” of home.
Wanting to create awareness of Guillain-Barré Syndrome is what prompted Danika to tell her story to the Celt.
“I would like people to see that if a relation or they themselves got it, they can see that somebody else had it and came out the other side. Because when you first get it you’re like - right, am I like this for the rest of my life?”
When she was at one of the lowest points in her illness she took great heart from a visit from a member of the Guillain-Barré Society in Sydney, who had been through the same experience.
“I could see she was normal again - there is hope. I could see a happy story.
“When she came in to me I couldn’t talk, eat, walk, so when I could see her I was like, right, there is hope.”
She is “shocked” there’s no equivalent society, support or awareness campaign in Ireland, and would love to see one established.
Danika has still a little way to go for a complete recovery. She was in hospital last week for an MRI scan “to see that everything’s alright”, and at the time of going to press was awaiting results.
“I would say I’m at 85%. I hope to God I’ll make to a 100%. I can’t say that everyone with Guillain-Barré makes a hundred per cent because they don’t. Some people do, some people don’t, so you never know. Everybody’s different, so you wait and see.”
She’s eager to get fit enough to be able to return to work. She feels her back and legs are still weak and walking any distance takes more out of her than it used to.
“It’s a thing that affects your nervous system and ruins all your nerve endings - they all have to grow back, that’s why it takes up to two years [to fully recover]. It’ll take another year and a bit.
“The biggest fear for me is falling, because if I fall I can’t get myself back up. It’s my legs, my arms still aren’t a 100% but my knees and my ankles aren’t strong enough so if I fall I need help, either by someone or holding on to something to get myself back up.”
This fear and her less-than-perfect balance prevents her from risking wearing stilettoes: “Stupid things like that I can’t do but compared to what I’ve gone through, that’s nothing - I don’t mind. It’s a good excuse not to have to wear heels,” she says with a laugh.
The tingling, pins and needles sensation in her feet, which she had when she first went into the Emergency Department eight months ago, are a gentle reminder of what she went through.
“I’m so used to it now I don’t even notice it in my feet. They say the last thing that will come back will be my feet, so it takes forever to get back down to my toes.”
Maybe surprisingly, Danika hasn’t been put off the idea of returning Down Under.
“It might be a few years, but I’ll definitely go back on a holiday. When you’re in hospital for so long, I made great friends with nurses and patients, so I’d love to go back and see them. There’s the weather as well.
“People ask did it ruin your experience in Australia? If I had have been left paralysed and all that I’d be like, I hate it. But the fact that I’ve got better, it’s life. Things happen, you’ve just got to go through it.”

Indebted

Danika and the McManus family were eager thank the staff of the ICU and Rehab in Prince of Wales, who they rate as “second to none”.
Danika was very grateful to the care, support, prayers and good wishes she received while in hospital from relatives, friends and neighbours, the staff in ICU and rehab, and the friends she made amongst the other patients.
“The only thing that kept us with our feet on the ground was knowing that prayers and masses were being said, and that everybody was behind us” said Bríd. “We are forever indebted to them.”