The Girl with the Cold was Actually Fatally Ill

TR Press UK - 02-04-2019

The Girl with the Cold was Actually Fatally Ill

Nanna Kjær Markussen was always the girl with the cold in kindergarten. She was more ill than the other children, and in the schoolyard she always found it hard to keep up. Not until she was 12 years old did the doctors discover why.

Nanna Kjær Markussen seems to hesitate for a moment when we arrive at the wide, quarry-tiled staircase at Aarhus Academy, where the 20-year-old young woman from Randers is a second-year Higher Preparatory student.

She smiles somewhat cautiously before taking the first step.

When she was a teenager, stairs posed one of the challenges that revealed that she was different from her peers.

Until she had a lung transplant one and a half years ago, she had not climbed stairs for several years. She simply did not have the breath for it. Simply tying her shoelaces, drying herself off after a shower or getting dressed were completely impossible for her without assistance.

"When I went to continuation school, I had some really close friends who were willing to help me. For example, they would carry me up the stairs," says a smiling Nanna Kjær Markussen.

On this Thursday afternoon in January – one and a half years after her lung transplant – she has no problem taking the stairs at Aarhus Academy.

We had agreed to meet to discuss her lung disease. The goal is to give the readers of a sense of who these children are for whom pupils in Denmark's schools will be running on the Friday before the Easter holidays as part of Team Rynkeby Skoleløbet, a charity run, from which all the funds collected will go to Børnelungefonden (the Children's Lung Foundation).

Gloomy Portent
Nanna Kjær Markussen sits down at a table. She is a frail young woman, but she is extremely focused and her voice is assured, when she talks about herself.

She got off to a tough start in life, when she was born at Randers Hospital in 1996. She was born four weeks prematurely. At birth she was apparently dead and needed assistance in breathing.

"I was placed in an incubator, and my mother sat next to me, talking to me to help me improve: 'Come on, Nanna. You can do it'," says Nanna Kjær Markussen.

Her dramatic birth and breathing problems were a gloomy portent of what was in store for the newborn little girl.

"When I was little, I suffered constantly from pneumonia. I was always the girl in kindergarten with the cold, and it was always me who needed to wear extra clothes. I was simply more ill than the other children. In school I couldn't keep up when the other kids were playing. I was so out of breath," she says.

In this respect, Nanna Kjær Markussen's story is far from unique.

According to figures from Børnelungefonden, every 10th Danish schoolchild suffers from breathing difficulties caused by asthma. That means that, in every school class, two to three children suffer from asthma, making asthma the most common chronic disease among children and adolescents in Denmark.

For children with asthma who receive the right treatment, the illness need not be a major problem. The children can easily be as physically active as everyone else.

But this depends on discovering the symptoms in good time and on the child receiving the appropriate treatment.

In Nanna Kjær Markussen's case, however, the doctors found it extremely difficult to diagnose her. "When I went to breathing tests at the hospital, they said I didn’t know how to do them because my breathing was so bad.

But actually it was because I couldn't breathe any better," she continues. It was not until she turned eight that she was examined by specialists at Rigshospitalet. "I was tested for a number of known lung diseases – including cystic fibrosis and PCD – but they could not find out why I had such difficulty taking in air," she says.

Incurably Ill
It was only four years later – when Nanna Kjær Markussen was 12 years old – that the doctors found out what the matter was. At Rigshospitalet she was diagnosed with the chronic lung disease ChILD, a lung disease that, in Nanna Kjær Markussen's case, would slowly but surely destroy her lung function.

"It may sound strange, but it was great to be diagnosed. At last I could say what was the matter with me when anyone asked. But the problem was that the treatment started far too late.

So my lung function would just get worse and worse, the older I got.

The only thing the doctors could do was to try to keep me stable until I was fully grown and hopefully could get a lung transplant," she says. When she was diagnosed with ChILD, her lung function was down to 29%.

Hard to Breathe
As she became older and her illness worsened, it also became more difficult for her to take part in social life in and around school.

"I tried to live as normal a life as possible. In fact, the doctors always found it hard to understand how I could live as a did with such poor lungs. For example, I continued to be a handball goalkeeper until I gradually had to stop training and only play in matches," says Nanna Kjær Markussen.

But eventually the handball matches also became too much for the teenager.

"At that time, I really slept a lot. The body has to work overtime when you can't breathe properly, so I didn't have the strength to do more than was absolutely necessary," she says.

By the time Nanna Kjær Markussen started at continuation school at the age of 16, her lung function was just 11%. Nonetheless, that year she had only relatively few sick days.

"Even though I found it really hard to breathe properly, continuation school was actually one of the best periods in my life. There were always after-school activities, so I kept going. And I had some great friends who were willing to help me, even without me having to ask," she smiles.

6% Lung Capacity
However, in the summer of 2014, when Nanna Kjær Markussen was 18 years old, her condition suddenly became critical.

Her lung function was now down to 6% and she was rushed to the intensive care unit at Skejby Hospital with an accumulation of CO2 in her brain. Her lung function was so weak that she could not excrete the waste materials in her body.

"I had to face the fact that I needed help to breathe. Throughout my illness I had tried to put off the moment when I would need to be connected to a machine and get oxygen 24 hours a day. I wasn't happy about the idea of being dependent on a machine. But now there was no alternative. By then I could barely do anything anymore, so I spent the following nine months lying in front of the TV with oxygen around the clock," she says, and then pauses.

"Even though I had struggled against having to have oxygen, the fact that it was now obvious that I was sick was in many ways a relief. I made it through the first year of high school, but I wasn't myself. I am very socially minded, but I was unable to meet new people and talk to people. At parties I couldn't dance, because I couldn't breathe. It was incredibly hard," she says.

"The oxygen made it clear to people that I was ill. Anyone who didn't know my background would probably think I had anorexia. I was very small and thin– I still am – but I was much thinner then. And, even though I was being tube fed, I couldn't gain weight because I burned so many calories just by breathing," says Nanna Kjær Markussen, who, last summer, was finally put on a waiting list for a couple of new lungs.

New Lungs
After nine months of waiting, suddenly one afternoon in May the phone rang. It was Rigshospitalet, informing her that they had acquired a couple of lungs that were a right fit for Nanna.

With full emergency response and a police escort, she was taken from Skejby Hospital to Rigshospitalet, where she was immediately prepared for surgery.

"The anaesthetist came and told me what was going to happen and I was even put under anaesthesia. But when I woke up again and sensed that I could breathe, I was told that I had not been given a transplant. At the last minute they had discovered that the lungs were not good enough and had therefore been discarded. So I still needed a machine to help me breathe, when I woke up," she says.

But it did not take more than nine days before a new donor was found and she was whisked off to Rigshospitalet once again. This time Nanna Kjær Markussen's operation went according to plan.

"I am deeply grateful to the person and the family who gave me a second chance by giving permission for an organ donation," she says.

A Good Life
For five weeks after the operation, Nanna Kjær Markussen still needed oxygen, while she gradually got used to her new lungs.

"For many years I was used to gasping for breath, so breathing deeply into my lungs was totally overwhelming," she says.

"Today I have a good life. I live just like all my peers, even though I probably appreciate the little things a bit more, for example, taking the stairs and tying my own shoelaces. Maybe I also try to keep a bit more active than my peers. I don't take an afternoon nap anymore, because I think that looking after my lungs shows more respect to the person who gave them to me," she says.

In addition to college, Nanna Kjær Markussen also plays an active role in the association “Unge patienter tar’ ordet”, for example by trying to persuade everyone to take a stance on organ donation.

"We try to talk to politicians and make them provide better conditions for young patients. For example, last summer we attended the People's Democratic Festival on Bornholm. I think it's important for all Danes to take a stance on organ donation.

I know it can help save lives," says Nanna Kjær Markussen. If you want to support Danish children with lung disease, then you can advise teachers in your network to register their school for Team Rynkeby Skoleløbet, which will take place in schools in Denmark, Sweden, Norway and Finland on 12 April – the Friday before the Easter holidays.

All the money collected in Denmark will go towards Børnelungefonden's work in helping children with critical lung diseases.

To teach pupils about lung diseases among children and to make it easier for the schools to integrate Team Rynkeby Skoleløbet into the curriculum, Team Rynkeby Skoleløbet has, in cooperation with Børnelungefonden, devised teaching materials on the subject of lung diseases among children, which schools can use in the weeks leading up to the race. View the material here.

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