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"We were young and healthy and now we have the lives of older people"

2021-05-17T01:48:53.259Z


This is the story of how the days of five girls and boys between 21 and 34 years old who were infected with covid months ago and have dragged on since then have changed


The strands of hair that they pick up from the bathtub drain when they have finished showering, if they can, are larger than before. They need 10, 12 hours of sleep, and they wake up like they haven't. 100 steps is an effort for them, 300 is sometimes impossible: they no longer run, ride a bike, or train. Nor do they smell, or taste a new dish, or the stew of their home of a lifetime. Not an ice cream, not a wine, not a beer, not a simple chewing gum. They have forgotten to type on a computer, there are words that they cannot find when speaking and they will not go shopping if it is not with a written list. They can't focus on a set for more than 10 minutes. Headaches, legs, chest. Conjunctivitis, urine infections, dizziness.

None of those who suffer from this long list of problems have yet reached 35 years of age, but their days are those of those who have 40 more and a thousand ailments. They were infected with coronavirus months ago, they did not enter the hospital and some even passed the infection with mild symptoms. But what came after, they say, nobody wants. His life, that of before, was paralyzed the moment the virus arrived. And they don't know when they can get it back.

They are patients with persistent covid or

long covid,

a term that the World Health Organization and the Ministry of Health already collect. The latter defines it as "a syndrome characterized by the persistence of symptoms of covid-19 weeks or months after the initial infection, or by the appearance of symptoms after some time without them." Without being related to how they passed the disease in the beginning, "so it can affect both mild and seriously hospitalized patients."

There are still few studies and many professionals do not fully know the ailments that affect these patients, who often claim to feel helpless.

With what is known so far, the estimate is that 20% of those who contracted the virus suffer from it about five weeks after infection and one in ten, beyond three months.

The survey among these patients that last year was carried out by the Spanish Society of General and Family Physicians (SEMG) together with the Long Covid Acts affected groups - the union of groups from the different autonomies that brings together some 3,000 people -, specified a profile: a 43-year-old woman who has had symptoms that do not disappear for more than 185 days.

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With more than 3.6 million infections registered in Spain, the number of people with these ailments could exceed 360,000. Paula Salcedo is 21 years old; Miguel Mendez, 34; Barbara Llorente, 31; Laila Martínez, 34, and Laura Fernández, 28. They are only five of the around 70,000 that, according to these estimates, there are in Madrid. If they are reminded of the images of last weekend after the fall of the state of alarm, the response is similar: a very brief silence and words like "anger", "indignation", "rage", "fear", "repulsion" or "pain". They know that those who chanted on Saturday morning "we have come to get drunk, the result does not matter to us" are not the majority, but they do not understand that, after a year and three months of pandemic, 713,185 infected and 24,011 dead,There are those who still do not perceive the risk for themselves and for others in queuing in groups, hugging, kissing and being without a mask even when they are on the street or in getting into a flat with a dozen other people.

Paula salcedo

“I get up, I take 20 steps, I go out to the terrace to let the sun shine a bit, like, I lie down.

That is practically my life "

Paula Salcedo with her mother, María Jesús Cañas, on May 13, 2021 at their home in Madrid.Alvaro Garcia

Paula does not know how she got it, but on Saturday in January, Filomena woke up with a sore throat and thought she had caught a cold. Four days and a few paracetamol later, her GP saw her and an antigen test gave her positive in 15 minutes: “That same day I started with all the symptoms: shortness of breath, very strong headaches, muscular. It was a rag but calm, because I thought it was two weeks ”. The next day fatigue came and taste and smell disappeared. His mother, María Jesús Cañas, with whom he lives, was also infected. “She recovered shortly and my symptoms went away for a few days, except dyspnea, I was breathing strangely, and neither taste nor smell. At the health center they told me it was normal and they released me ”. Days later, shopping in a supermarket,The headache, the discomfort and the sore throat returned, "as if it were starting all over again."

When his mother was also discharged, they went out for a walk: "I was drowning, I couldn't, a lot of dizziness, a headache." His doctor repeated that it would happen. “You, normal strip, he told me. I tried to pretend nothing, but it was nothing. I called again and she told me that I was very apprehensive, that I had anxiety and that I had to make my life. What a life? Then came the tachycardia and countless things that have not stopped today ”. He studied protocol and organization of events and had to leave it, he could not fix his eyes or concentrate. She had just bought some skates, they are stored in the closet. She was taking care of a child in her urbanization, in Boadilla del Monte, she can't anymore. Have insomnia “I get up, I take 20 steps, I go out to the terrace to let the sun shine a bit, like, I lie down. That, that's practically my life, ”says Paula.Try to hold back crying. All her analytics and tests come out clean, but there are days when she thinks that I wish it were not like this: "That something goes wrong, let them know what happens to me, treat me and heal me."

"In the long term, neurological damage from covid will be the most worrying"

Up to 200 different symptoms have been detected.

Jesús Díez Manglano, president of the Spanish Society of Internal Medicine (SEMI), explains that the average, concomitant, is 30: “There is no disease that manifests itself with so many symptoms at the same time.

We are facing an unknown pathology that can cause a lot of discomfort and many people who live with great concern or great uncertainty, who do not know what is going to happen or what has happened ”.

What they have perceived, Díez adds, is that those who, despite their ailments, continue or try to continue with their routines, "achieve better functionality with a decrease, if not disappearance, of those symptoms that limit activity."

The lack of certainty produces anguish in the sick. Also in the toilets. There is an emotional and psychological part that is difficult for everyone to manage. "It is a vicious circle. When there is an added worry component, if I limit my life, I focus more on the strange sensations that I have. Mental predisposition and mental attitude is important, but uncertainty is extremely difficult to handle, especially when we are talking about health, and more so with so many diverse opinions ”, the internist deepens. In any case, says Díez, doctors are scientists and as such they have to "proceed": "When I have evidence, I say" this is so ", and when I do not have it I say I do not know, but I cannot say" this is not or it does not exist ”.

That "nothing happens to you" is something that some patients hear from their family doctors.

The novelty of the infection and the symptoms of persistent covid, added to the saturation suffered by the health system, does not help the shocks that occur from time to time between patients and professionals due to this newly arrived pathology.

Sometimes, the private is an escape route from weeks or months of waiting for consultations or tests.

As in the case of Paula.

We have waited three months for a consultation, two months for a test.

They tell us patience, but life is cut short "

María Jesús Cañas, mother of Paula Salcedo, sick with persistent covid

Her mother, autonomous, 52 years old, has had to put her work aside, because the care she needs is almost continuous and the money does not stretch enough to pay someone the time she spent outside, plus the consultations, plus the daily life. There are no aids. "We understand that the focus is on saving lives and vaccinating, but these people cannot be forgotten," says María Jesús Cañas. “We have waited three months for a consultation, two months for a test. They tell us patience, but it is that the lives of these people are cut off ”.

Pilar Rodríguez Ledo, Head of Research at the SEMG and one of the main promoters of the persistent COVID project - which now, together with 47 other scientific societies have drawn up a clinical guide to care for these patients, sent to the Ministry of Health - explains that These overlapping ailments affect quality of life and functionality: "We are facing a health problem, but not only a health problem, up to 70% of these patients have problems maintaining their work or educational activity."

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Address persistent covid

There are estimates, says Rodríguez, but no real data: “There is no adequate patient registry. Once the acute illness passed, he was discharged. When they returned again, they were discharged because of the symptom they had, not because of the disease. It is as if someone has pneumonia and the sick leave is due to fever, not pneumonia ”. For this reason, there are no clear records. The vast majority of these patients are not identified or recognized; the calculation is that "if between 10% and 15% of those infected develop persistence symptoms, with the infections that exist, not only those reported, but all, we are talking about 500,000 people," says Rodríguez.

“And if 70% of them have significant limitations for work activity, there are about 350,000 people with work problems. And of that 70%, the 30% limitations that prevent it, we are talking about a very large number, more than 100,000 people, who are surely on sick leave for other reasons and other diagnoses, such as syncope, tachycardia, migraines, diarrhea. .. But the reason is the covid ”, he explains. This becomes "a health, work, family and economic problem," he adds. "The younger staff cannot produce or those who find employment will not be able to keep it, those who study do not progress through the course."

On May 1, the Long Covid Acts collective published a manifesto in which they asked for their rights to be recognized "as citizens."

“People of maximum productive working age who have had to abandon our job.

We need the new disease to be recognized and properly cared for in order to regain our health ", said the document, which added" a loss adjusted to the persistent covid and not to one of the multiple symptoms of it "and the" gradual "incorporation to the job.

"Those of us who, in March 2020, at the beginning of the pandemic were a health problem, have also become a social and labor problem that the responsible authorities must, because our rights protect us, solve and address", closed the manifest.

Miguel Méndez and Bárbara Llorente

"From here to what it takes half an hour, a kilometer, we can't make many plans"

Miguel Méndez and Bárbara Llorente in their flat in Madrid on May 13, 2021. Alvaro Garcia

From the small apartment where Miguel Méndez and Bárbara Llorente live, he goes in and out every day.

His recovery was better, although a new headache has remained to coexist with his old migraines.

Bárbara, a graphic designer at a publishing house, has been absent for more than a year;

Miguel, after his, left his job in the kitchen of the Ramón y Cajal hospital, where he became infected, and managed to enter the teachers' bag to teach at an institute, for what he was preparing and where he is now part-time.

Outdoor sports, the gym, traveling? They finished. But he knows that he has at least gotten a piece of his life back. She did not: “I have improved and in a way I have gotten used to living like this, with limitations. I'm afraid to go far from home in case I get tired ”. Pain in the chest, throat and head, “a lot”, and a “constant exhaustion”. Barbara cuts the story from time to time due to coughing. Meanwhile, Miguel says that even the supermarket involves planning: “Depending on the day, we see how far he will be able to stand up. From here to what it takes half an hour, a kilometer, we can't make many plans ”.

He no longer helps her in the bathroom, but he is aware of that and other moments, like the ten in which they had to go to the emergency room because she was short of breath.

The tests, however, "went well," she says.

Five months after being infected, they detected a pulmonary thromboembolism.

She ended up admitted for a week.

They also noticed that he was walking "weird."

Hyperreflexia, was the diagnosis in one of the postcovid consultations in his hospital, an abnormal and exaggerated reaction of the involuntary nervous system.

This is a lottery, I worked in the hospital and I got infected and I had no choice, but seeing what happened last weekend ... They do have it "

Miguel Mendez

Tests and more tests. "Always late," she says. "And we understand it, but desperation is absolute, my next appointment with the pulmonologist is on November 18". They are both taking antidepressants. "You see that your life is not normal," he says. “We sometimes look at the photos of when we went on a trip and this limitation now,” she says. Take a deep breath and cry: “They are going to open the pool, which is 500 meters away, and right now I could not go. Something as silly as going to the pool. " Miguel sums up: “People think that there are only sequelae if you go through an ICU, but it is not like that. This is a lottery, I worked in the hospital and I got infected and I had no choice, but seeing what happened last weekend ... They do have it ”.

Sometimes, very rarely, a young person ends up in an intensive care unit, where the most seriously ill, those who cannot breathe on their own, are treated. There are no consolidated data and Isidro Prieto, intensivist and treasurer of the Madrid Intensive Medicine Society, makes an estimate based on his income during the pandemic: between 5% and 10% of the patients who arrived at his unit are below 40 years. “Is a young person likely to end up in an ICU? No, but they transmit the disease and have parents, grandparents, friends, and parents of friends. Yes, I am fine, but I can transmit the disease and someone has the possibility of dying, it has not been understood at this point that we have failed in something ”, he says. And he adds: “That it is more improbable does not mean being exempt, when we are young we think that we are immortal,but the risk exists ”.

Since last summer, the highest rate of infection has been among teens and young adults.

Each week, the Community epidemiological bulletin includes the same annotation: "In the last 14 days, the highest cumulative incidence corresponds to the group aged 15-24 years."

According to the last one, on Tuesday, since May 11, 2020, the highest incidence has occurred in that age group, with 12,336 cases per 100,000 inhabitants;

and, in absolute numbers, from 25 to 44, with 208,467 infections.

In the last two weeks, the population of that age has registered 6,973 infections and those between 15 and 24 years old, 2,795.

"When you leave the ICU it is as if a train had passed over you"

“Whoever ends up intubated in an ICU, I am 20 or 70 years old, ends up with the failure of an organ, which overloads the rest, they put themselves to the limit and also begin to fail, this is what we call multi-organ failure, most patients have it ”Explains Prieto. And nothing they do there to get them to get ahead is free from complications: "Mechanical ventilation creates problems, the sedative and relaxant that we use causes damage, the pathology through which they enter generates damage."

When they wake up, surrounded by tubes, disoriented, not tolerating food and practically immobilized, the next phase begins, recovering from that critical passage.

It is the post-ICU syndrome.

“It can be weeks, months or years, it depends on the severity and the patient, but the scars, the cognitive and physical deterioration, is great, also the emotional one.

Psychological and medical support is needed for a long time ”, says the intensivist.

"This is not I leave here and continue with my life as if nothing had happened, and it can happen," he warns.

Laura Fernandez

"When I was about to achieve what I had dreamed of since I was seven years old, everything went to shit"

Laura Fernández, near her home, in Madrid, on May 14, 2021. Alvaro Garcia

Without having gone through an ICU, Laura Fernández is closer than many other young people what happens in hospitals. His mother, a health worker, was the chain of contagion, in March 2020. He spent 55 days with a low-grade fever. Not a PCR: "At that time there were no tests for anyone, but my mother's family doctor, who was the one who did the follow-up, gave me positive." The symptoms of the virus hurt him less than having to put away his doctoral thesis. Archaeologist. And when I was about to achieve what I had dreamed of since I was seven years old, everything went to shit. "

At home they were scared. He also has a little sister, mentally disabled; they wondered what would happen if something happened to them. "If one of them got worse, she would go to the hospital and the other would stay with my sister," she recalls. Everything weighs on him, but he endures it: “The symptoms went away but came back. I did not break down, I have redirected my degree and now I am studying competitive examinations for museums ”. But it is not going fast. Her chest hurts, she has two maintenance inhalers and a rescue inhaler, brain fog and pills to help her focus, "it's not a solution, it's just a patch." He forgets paths he has done "40 times", words, and his social life has gone "from 80 to 1": "I see my boy and because he lives 15 minutes away." It reaches 160 beats at rest and the oxygen saturation plummets with any effort.

Now what?

“Now, sometimes, I hate people a little bit who behave as if nothing had happened, as if the rest of the people had not lost people they loved.

I see the bars at the top and it really pissed me off ”.

His now, only his, is to continue, something he shares with the around 700 people in Madrid who are part of the Long Covid Acts collective: "Improve, be able to get out of the oppositions, get my life back as much as I can."

Laila Martinez

“When I started to speak, when I wrote, I didn't conjugate the verbs well.

I've been in rehabilitation for three months, reading primary education texts "

Laila Martínez, 34, at her home in Madrid on May 13, 2021.

Laila Martínez's "anger" is somewhat greater than Laura's. He asked the questions in advance for this interview: "I need to write the answers, I forget things, I get lost in the middle of sentences." Throughout 46 minutes on the phone, Laura has her partner close by, in case she goes blank, and several times there is silence: "Wait, I'm lost." This occupational therapist worked for the Community of Madrid, she was part of the social health personnel that makes dependency assessments. He walked back and forth from center to center, from the mountains to the south, he stayed when he finished his day to see the place where he was if he had never been yet and if there was something “interesting”. Now, "the tests that I did to those I visited, I do not pass them."

It was infected in the second wave, in mid-September. Running,

cross training,

aerobics, reading, everything outside. First were the headaches, diarrhea, stomach pain, muscle pain, dizziness, cramps and a feeling of being feverish without being feverish. After a month the PCR was repeated, and with the negative, discharge. “Then the pressure started in my chest, I went to the emergency room, they didn't know why it was. Now they come and go, some remain, new ones appear ”. He tried to go for a walk, every day more. "But nothing. I began to notice strange things, problems when speaking, when writing, the words did not come out, I did not conjugate the verbs well, my husband accompanies me to the shopping, because sometimes I do not understand who he is speaking to ”.

He has been in rehab for three months and on medication.

Read and answer questions from elementary school texts with your speech therapist.

The language has almost completely recovered it, although it continues to lose the thread of the conversation from time to time.

They found a calcification in a heart valve: "They tell me that it is very rare in a young person, without a family history, but there is no way of knowing if it is due to the virus."

He caught him again without knowing how and after getting vaccinated: "I don't even go out."

Of a variant, the British one - the predominant one in the community, with 92%, according to data from the Ministry of Health this Friday -, according to the results of the analysis that they sent to do with their sample.

Before I slept six hours and was going like lightning, now with ten the battery is at 20% "

Laila Martínez, sick with persistent covid

More symptoms have been added: allergic reactions, uveitis (an eye injury), hair loss, skin problems.

“I have improved a lot, but being bad for eight months is difficult.

Before I slept six hours and was going like lightning, now with ten the battery I have it at 20%.

But I'm fine, I'm trying, if not, I would have thrown myself off a bridge by now ”.

One day after the interview, on Friday, Laila had a consultation in a public hospital: “The specialist doctor who treated me told me:“ That you have persistent covid ... but what is that?

Are you still contagious? "

He assures that it is not the first time this has happened to him and he is saddened and angered by the lack of empathy with which he sometimes encounters.

She, through her partner's health insurance, also ended up going private and is attending respiratory rehabilitation in a study at the Complutense University. He knows the situation of the professionals, the health system, "up to the top", but he does not stop thinking that "the consequences are paid by the people, with their health." She, she assures, is privileged because she can pay for rehabilitation, "but who can't?" He says that he cries and that it is "as if he had the beginning of Alzheimer's, all full of

postit".

He says that they fight, that they continue, but that they need attention, research and “that people stop pretending that this has already happened, because there are and may be many people like me. We were young and healthy and now we have the lives of older people ”.

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Source: elparis

All news articles on 2021-05-17

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