Cough is heard from the room upstairs. Jana has been cold for a few days, the pediatrician tablets have not worked at all. It is the beginning of November, it is cold outside and most of its classmates at the Business Academy in Uherské Hradiště are also sick.
Jana lies in bed and looks on her mobile sites with social dresses. A few weeks in a few weeks awaits a ribbon. He does not know what he chooses, even if it is needed at all. It is 2021 and the pandemic of coronavirus cancels one event after another.
“Mom, somehow my legs are tingling,” says Jana when a mother with a cup of warm tea appears in the door. Jindřiška Mošťková thinks for a while, but she does not think of what she could grind from to her daughter and snort her legs. After all, tomorrow in the afternoon, Jana and his father ask the doctor. They planned to go there anyway. They have to declare Jana from a pediatric outpatient clinic to the general practitioner for adults. He is already eighteen.
A brown -haired girl will drink from tea and dives again in finding dresses. The most interesting ones sends out to friends. He has so much ahead. In a few months she is waiting for her graduation, she wants to apply for an economic university, she has planned dance performances with a folklore ensemble and a gym brigade in the summer. But none of this will happen.
In an ambulance she thought about the exam
Jana reaches for the mobile, and the ringing of the alarm clock is silent. He must go to the bathroom to prepare to the doctor. She gets out of the bed, her legs shake, her knees undermine, and the girl falls to the ground. He is scared and calls his parents. He is trying to stand up, but it’s not possible. He only feels tingling and tingling in his legs. “Dad called an ambulance, we didn’t know what was going on. I also had an eyelid, ”he describes the memory more than three years ago.
The outpatient clinic took her to the hospital in Uherske Hradiste. She didn’t know what happened at all and why she wasn’t going, but she didn’t lose any horrific scenarios in her head. “In the ambulance, I was sorry that I would probably not be able to make a exam from the mathematics I was learning, and I was wondering when I would probably get another term.”
She was examined by a neurologist in the hospital and made her lumbar puncture, but they did not reveal anything. The doctors therefore decided to spend the next ten days on a hospital bed. They assumed that until then her strength would return to her feet and would be able to go home. She became calmer, but she is in the hospital. Doctors will surely find out what it is in ten days.
She fell asleep and paralyzed
She shaken the white pillow and covered with a duvet. The hospital room was dimmed, cough and tingling legs continued. She played the movie on her computer and her eyes started to clip.
She woke up in the morning, but not to ring the alarm. Strangely, you set it up in the evening. Who knows how much she slept? She heard carols from the radio and the silent voices of her parents. They didn’t notice he’s no longer sleeping. She wanted to open her eyes, but she couldn’t. She couldn’t even move her eyelids, she couldn’t even give a voice. She didn’t understand what was happening to her and where it was.
Jana really woke up where she was at bedtime: at the anesthesiology and resuscitation department of the hospital in Uherské Hradiště. However, since she fell asleep with the film, he has passed the Moon. “The first night in the hospital my whole body collapsed, I stopped breathing, had to resuscitate and intub. I paralyzed the whole thing, ”describes Jana a moment who changed her life. He does not remember him, he only knows him from the narrative of his parents.
The doctors immediately put it into artificial sleep that night and connected to the devices. Even after two weeks, they did not figure out what Jane had happened, and why he died of ordinary cough and leg tingling. They did not know if the brain would have hit, when and whether they would wake up at all. “Then they came up saying it was Guillain-Barré syndrome.”
This rare neurological disease is typical of men over 60. The body’s immune system attacks the peripheral nervous system, ie nerve fibers located outside the brain and spinal cord. Why he has a healthy, young girl, and why he was so strong, doctors can not explain to this day.
Imprisoned in his own body
Although she woke up for a moment, she couldn’t show it in any way. From the first days she only remembers scraps of sounds: the radio or voices of parents telling her that Nicholas is. Just sometime in this period she woke up completely. However, it took several hours to find out its surroundings.
Like every day, her doctor was carefully opened by her doctor with a forefinger and thumb. A small flashlight headed to the still girl to the pupil. However, they were no longer immobile. They finally responded to the light. Jan’s look was not “blind”. For the first time in the whole month she looked at the doctor.
The joy that Jana had been taken over was indescribable. But she could still not talk or move. Doctors had to think of another way to communicate with it. She was opening her eyes, held her eyelids, and asked her various questions. When he moved from top to bottom, it meant yes. Not left right again. Over time, her doctors began to show letters, and Jana “told them” a few words.
After a few weeks she was able to move her head and open her eyes. She got into the room by a computer that she controlled with her eyes and could communicate with the doctors. Since there was a pandemic, visits to the department were limited and only parents could see. She was most pleased when her friends and classmates recorded encouraging messages. Her parents released them from the radio she had at the bed.
“What did you say first when you could already communicate over a computer?” I ask and think what it could have been.
“I am very warm,” laughs Jana. Sounds strange. It was January, it was cold outside and a window open to the room. Jana, however, waved high fever. Despite the winter of her nurses, they put ice cube in her mouth and made her cold compresses to cool her.
Jana says she had no problem with memory, although the first days she was a little confused and tried to understand what happened at all. But she had severe pain and the drugs helped her manage them. “They were dampening me, so I slept a lot.”
She learned to sit and swallow
Another difficult test came in February when her nurses and doctors first sat on the bed. “It was an incredible pain. My back ached, my head was spinning, but it was a great joy anyway, ”she recalls.
After months, when she only looked at the ceiling, she finally saw her whole room and could see the nurses and doctors who took care of her all the time. They regularly trained seating, first with the help and later her back was supported by pillows to sit herself.
Jana, however, still did not talk and in her neck had a tracheostomic tube. The tracheostomy refers to the condition after surgery when the trachea artificially results in the body surface. Such a procedure has been done for a long -term attached artificial lung ventilation.
In April, it was disconnected from the lung ventilation and was taken a month to Motol Prague Hospital. There she removed her tracheostomic cannula and Jana could start learning to talk again. However, she still had tubing to eat, and the catheter introduced from the abdomen into the bladder. After about two months in Prague, she went to the Rehabilitation Institute in Kladrubo for almost half a year.
The plan was clear, Jana had to learn everything from the beginning: to eat, drink, swallow, talk, dress. However, it was not like a child who discovered all this for the first time. “I knew what to do, how to swallow food or talk, but the body didn’t listen to me and didn’t want to do it,” she describes months after waking up.
She regularly trained the use of facial expressions, eating or drinking with the speech therapist. Even trivial tasks, as drinking water from the glass, have turned into a duel with their own body. And various tricks were allowed. “The speech therapist tried to make the exercise more pleasant, so she gave me a compote juice instead of water,” laughs a young woman who finally celebrated her 19th birthday in the hospital.
One truck at home is not enough
When Jana released home, parents had to make several changes in the house. The bed moved her to her living room because she couldn’t get to the floor where she had a room. In the toilet, the handles were added and the bathroom has also had to adjust. Despite the modifications, Jana needed constant care and help, and her parents alternated.
After three years it is different in the Czech family. Jan’s mother can go to work for a few hours a day because her daughter is significantly better. He can already take care of himself, drink, eat and move around the house almost without problems. One trolley is down on the ground floor and the other up at the room. Although it takes quite a long time, it can go up the stairs and can use his old room again.
It is not easy to get used to life with a handicap, but the hardest thing for Jana was to change her mind and stop asking why she has such a rare neurological disorder. “I was still wondering what I deserved. When I didn’t get answers from anyone, why I stopped thinking about it, ”he says.
She learned to enjoy the little things. There are still moments when she is disappointed that she does not advance as fast as she would like. Then he stops and remembers where she was three years ago. It is also helped by the support of her loved ones.
“I am very grateful that in addition to my family, I also have friends who stand by me.” It is with them that she is going on holiday in the summer. They are already looking for places to get with a wheelchair. He admits, however, that the circle of friends was diluted after the disease.
Once a year, she goes to Prague, where doctors watch her “grow” damaged nerves and what responses they have. They see, as her body continues to progress, regenerate and investigate which parts of its parts should be concentrated during rehabilitation.
When Jana was healthy, she skated, cycled, danced a lot and went to nature for hiking. Movement has always made her happy, and apparently because of that she wants to exercise so much and rehabilitate. It is crucial in this diagnosis for the first five years.
Even after three years, however, doctors still cannot say how it will progress and whether her body can return to the condition before paralysis. “I know people who only hit the disease with their legs and walked for three months. But also those who have been lying, ”describes Guillain-Barré syndrome. Nerve regeneration is completely different in each patient.
The first steps were taken in Slovakia
Money is also a problem. In the Czech Republic, the insurance company pays outpatient treatment once a week per hour. If Jana wants to walk alone again, the hour is not enough once a week. Therefore, she practices at home and when she succeeds, she travels to Piešťany for a two -week rehabilitation stay.
“The beaker is reimbursed and the sad thing is that sick children or seniors have to make collections to pay for treatment. My rehabilitation is also expensive and I do not feel pleasant that I am collecting money, but without them I can’t do it, ”says Jan in embarrassment.
In addition to long -term stays, it occurs to Slovakia twice a week for exercise. In a specialized rehabilitation center she trains walking and it was in Slovakia that it has walked the first meters itself. “It’s more than three years since I paralyzed. It is very important for the head to see that he is making progress. The few meters motivated me to continue, ”he laughs. And although Jana makes progress only after steps, he knows he doesn’t miss anything.
Finally, she did not manage to see the math and made graduation at the Business Academy almost two years later as her classmates, who sent photos of social dresses to the ribbon in November 2021. She finally sent the application for the economic university and is studying there today. In the spring, it will celebrate 22. Birthdays and is increasingly thinking about applying for health education.
“When you walk and dance, I will see you and write another article for you,” I say. “It is true,” Jana replies, and I know that neither of us says it just from decency. “I’m glad I could tell you my story. Maybe people start to appreciate little things. ”
