Five years with Covid: "Many nurses got infected at work and now we are not respected"

Dossier Five years with covid Desplega

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How have the sectors most affected by the pandemic changed?

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"Madrid manipulated the Covid data as it does with the waiting lists"

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Five years with Covid: "Many nurses got infected at work and now we are not respected"

BarcelonaFor a month and a half, Miguel has barely gotten out of bed. He is completely disabled. Although he is already 16 years old, his parents have had to put a railing so that he does not fall while sleeping because he had woken up several times face down in the middle of the night. In 2020, like many people around the world, he fell ill with Covid-19 during the first wave of the pandemic. However, unlike most people, he still has not recovered his life five years later and does not have any prospects of improvement. He has persistent Covid, a disease with no treatment and full of unknowns that severely limits the lives of those who suffer from it.

"Hi, Mom. I got up, crashed into the scooter, fell on the railing and broke it. I hope you had a good day, I love you very much," says Miquel in a letter he wrote to his mother, Berta [names are pseudo. He was left in the entrance along with the wooden pieces of the barrier that had previously prevented him from falling out of bed. Since 2020, he has had frequent episodes of fatigue and headaches that leave him "dead in life." He hardly leaves his room and sleeps most of the day, his mother explains.

When the symptoms disappear, Miquel leads an almost normal life, going to school and playing football with his friends. However, his adolescence has not been the usual one for a young man in Catalonia. Since he was 12, he has had to deal with fatigue, pain and the need to sleep for many hours. "When he has serious episodes, he sleeps 16 hours straight," says Berta. "I look like an 80-year-old," complains Miquel, who has passed compulsory secondary school like the rest of his classmates, although now he gets worse grades because he has missed many classes and when he has peaks of tiredness he cannot study.

To mitigate the emotional impact of the disease, Miquel began psychological therapy. For the moment, he is fine emotionally, but his mother fears that these episodes will end up taking their toll on her and admits that she does not know how long her son will endure. "He gets dizzy, he has vertigo and no treatment works for him. The medications they give us are not effective, we don't know what will happen," says Berta with a broken voice.

Without treatment

"For now there is no treatment available. More research needs to be done, it is essential when you are faced with a new disease like this one where you cannot give any response to patients," says Lourdes Mateu, head of the persistent covid unit at the Germans Trias i Pujol Hospital, the only one specialized in this disease in all of Catalonia. They receive patients from all over the territory, but they cannot cope and only those who have the most serious symptoms visit.

According to the Department of Health, there are more than 16,000 Catalans with a record of persistent covid in primary care. However, Mateu assures that it is a disease that affects 5% of people who have been infected, so she estimates that there are about 300,000 affected people throughout Catalonia, although most are not diagnosed. "Protocols and circuits should be activated from the CAP because there are many patients and not all of them can access the unit," argues the expert. The average age of the patients is 49 years old and 65% are women.

Currently, there are more than 2,000 people linked to the long-term covid unit. They receive psychological and therapeutic support and are also offered the possibility of entering studies that seek an effective treatment. "At the moment we must treat it as a chronic disease without care, but I am hopeful that we will find a solution that improves their quality of life," says the expert.

Mònica Condeminas is one of the patients in this unit. She is a nurse and, like many others, she was infected during the first wave of the pandemic while caring for the multitude of patients who were collapsing the country's health services. Since then, her life has changed completely, as she has never been cleared of the disease and the symptoms only increase. She has learned to live with fatigue, but she does not want to give up and tries to participate in all the clinical trials there are. "Without research there will be no care, that's why I sign up for all the studies I can, so that we can be treated and get our lives back," he explains.

Different symptoms

Not all people with persistent covid have the same symptoms. Some can lead a more or less normal life and others can do nothing, they have many limitations. According to Mateu, fatigue is the most frequent symptom, but there are also patients with joint pain, tachycardia, insomnia, cardiac and neurocognitive problems, such as brain fog and memory disorders. "For example, in the unit there is a pianist who does not remember how to read a score or a man who was going around in circles in a roundabout without stopping because he did not know which way he was going to exit," explains Mateu.

More than 40% of patients also have a diagnosis of anxiety, 27% of obesity, 19% of depression, 11% of asthma, 9.9% of liver damage and 9% of fibromyalgia, reports Salut. Given this scenario, experts insist on the importance of putting greater efforts into research and promoting new studies that allow for greater knowledge of this disease. The department explains that only 15% of patients have seen their situation resolved, with an average disease duration of 255 days.

The only hope

Carlota is another of the patients who this week began a clinical trial from the Can Ruti unit that evaluates the effectiveness of a treatment against persistent covid. She is also a nurse, but has been out of work for five years because of this disease. She was 23 years old, had already finished her degree and was studying her second master's degree when the health crisis broke out. She volunteered to work in a large hospital of the Catalan Health Institute (ICS) during the first wave of the pandemic, thus responding to the call of the administrations that asked for solidarity from students and retired professionals to be able to care for everyone.

She became infected at work and had to isolate herself, but as the symptoms did not disappear, she was closed for 40 days without being in contact with anyone. Little by little she began to improve, left home and, finally, returned to work during the second wave. However, it did not last long because she had a relapse and, since then, she has only gotten worse and added new symptoms. Carlota cannot make any effort, she suffers from intense fatigue, breathing difficulties, chest pain, cognitive deficit, muscular rigidity and a long list of other things that completely incapacitate her.

Even so, she has had to take her case to court to obtain permanent disability and, like the rest of the patients interviewed by the ARA for this report, she feels abandoned by the same administrations that asked her for help five years ago. "We feel alone, helpless and trapped in a struggle that never ends and is exhausting. We are trapped in bureaucratic tasks and we have to resort to the judicial route to have our occupational disease recognised. It is absurd," she laments. The only alternative she has right now to try to get her life back is the clinical trial and she admits to being nervous, but also hopeful.

"At 28 years old, I refuse to stay like this forever. In 2020, my life stopped, my dreams and goals have been completely cut short. I have had to give up my professional life, but also my personal and romantic life," she says with resignation. Even so, she is clear that she wants to continue working as a nurse, although she does not know if she will be able to practice the specialties in which she has trained. "I have colleagues who tell me that perhaps I should reconsider, but I have hope of returning, it is my vocation. I did not think twice when they contacted me from the hospital to go and help everyone I could," she adds.

Misunderstood

Another thing that all patients have in common is that they feel misunderstood. Sara was working as a nurse in one of the country's main public hospitals when Covid-19 appeared to turn everything upside down. She fell ill while caring for critical patients in one of the intensive care units (ICU) that were improvised to respond to the large volume of cases that there were at the time. She has not returned to work. She, unlike many colleagues, has been "very lucky" because she was recognized as having a work-related disability due to an occupational disease.

However, Sara misses the support of other institutions. "We responded to the pandemic by giving much more than we could and now we do not even have the support of our college (Official College of Nurses of Barcelona). We just want to be well to continue caring for the population," she laments. Instead, she highlights that she and other affected colleagues can undergo rehabilitation and immersive therapy thanks to a program from the Barcelona College of Physicians and the Galatea Foundation, and also the INA Memory Center. "We do therapy to have a better therapeutic plan and we would like to be able to do more sessions," explains Sara. Condeminas also attacks the lack of support and remembers that they were the ones who stood up when the health crisis was most serious: "Many nurses got infected at work and now we are not respected."

Mateu recognizes that in Spain there is a lack of training in persistent covid and that there are professionals who still question the disease. "We must show them the evidence, we must work so that everyone knows that this pathology exists," she says. In other countries such as the United States, Germany or France, on the other hand, a lot of money has been invested in research and she trusts that the State can reverse these five years of delay in research due to lack of resources.

Until any care is forthcoming, Miquel's family pretends that everything is as before; when he is not suffering from episodes of tiredness and fatigue, they try to lead a normal life. They make plans for holidays and buy concert tickets in the hope that their son can go, although he often stays in bed. "It's worth losing the money for the opportunity to do activities together. Now, when you leave him at home sleeping, you break down, it's very hard," admits Berta, who complains that they have been fighting for five years and still no one knows what is wrong with her son or how to cure him. For all this, she calls for research so that the young man can return to normal, as we all have done.