Rosa with Long Covid for 2 years: “The disease was like a tsunami, they told me it was anxiety”

What do we know about Long Covid, the long-term effects of the Coronavirus

Rosa is a 34-year-old nurse who fell ill with Covid in March 2020, in the same hospital as ‘patient 1’ in Codogno. After more than two years she continues to have symptoms of Long Covid, she cannot go back to work or take care of her baby alone.

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What do we know about Long Covid, the long-term effects of the Coronavirus

Covid-19 for Rosa Carpentiero it’s not finished yet, after more than two years. He continues to reckon with the consequences of the infection, and they are not symptoms that can be easily forgotten. Rosa is 34 years old and fell ill in March 2020, in the midst of the first wave and before the vaccination campaign, in the first red zone established in Italy. She was a 32-year-old nurse on the front line against Covid when she was infected, in the same hospital where ‘patient 1’, the 38-year-old from Codogno, Mattia Maestri, was hospitalized. Back then no one was talking about Long Covid, for doctors this condition did not exist.

We contact her on the phone, she has a hard time talking, but she still wants to explain everything to us in detail, to make us understand why and how the virus has changed her life. It is not easy for her to accept that she can no longer be the dynamic person she was before her, that she can no longer drive a car and take care of her small child alone. Until 2020 she played sports, worked in the ward and taught at the University of Milan, a position that she had to abandon.

For her, Long Covid meant a limitation in carrying out the most trivial daily activities, because the symptoms never disappeared: “I was healthy, the disease attacked me like a tsunami. At that moment I was underestimated and diagnosed with anxiety, like many other patients, without the appropriate investigations and I understood that the doctors had no idea what was happening to me because the prognosis did not correspond to the recovery. At first they told me that being young I would recover soon, and I would be back as before “.

Long Covid, what we are talking about and why it can change the history of this pandemic

Rosa, despite being a doctor, belongs to the group of patients that in the first wave they did not have access to tampons at the onset of the first symptoms and in appropriate times to be reliable, nor to adequate and timely treatment: “I got sick in the most critical week of the Lodi area, I immediately developed pneumonia, which however was not treated promptly. I presented highly suggestive symptoms for Covid-19, but when I did the chest X-ray I did not have access to the swabs , and this has done me a lot of damage “.

Rosa is not hospitalized, but he is sick immediately: “My Covid was not paucisymptomatic or asymptomatic, I had very heavy symptoms. I was in bed for 40 continuous days, with pain, respiratory symptoms and diarrhea, which devastated me devastatingly. I lost 7 kilos in two weeks , I could no longer eat or even walk “.

In the photo on the left Rosa in January 2020, on the right in March 2020

In the photo on the left Rosa in January 2020, on the right in March 2020

Rosa spent thousands of euros to get treatment

“Although I had had access to the emergency room over time, instead of improving I was getting worse. After a month and a half I was visited by the pulmonologist of Codogno, who took care of me, and provided me with the first useful treatments. When I arrived from he couldn’t even stand up straight. ” From that moment on, Rosa began to carry out checks, spending thousands of euros for visits, exams, drugs and supplements, which she does not even know when she will be able to suspend. Long Covid is a chronic, multi-organ, very disabling situation, so you need to see many specialists. “When, a year after contracting Covid, the doctors of the Gemelli in Rome placed the ultrasound probe on my chest they told me ‘Here there was a strong inflammation, which also caused a scar on the heart'”.

At some point he even tries to go back to work, but even if they assign her lighter tasks, she is forced to leave: “I had a strong relapse with complications, and they put me back in injury. To date my physical conditions do not allow me to support the job, also because in January I also had a reinfection with the Omicron variant, which caused me further sequelae. ” She is currently in injury and her future, after two years of illness, is still an unknown.

The Long Covid exemption code does not existand since she has not been hospitalized she does not fall into the case that can use the funds allocated by the Sostegni bis decree for the exemption from the ticket for outpatient specialist services (included in the essential levels of assistance) of patients with this pathology. Despite being on the waiting list for tele-rehabilitation, he also had to pay for the rehabilitation process with the physiotherapist out of his own pocketwhich lasted four months, because the waiting times would have been too long: “I have the accident exemption code, but I was able to use it very little, also due to the restrictions of the various waves that blocked reservations. Above all when I was urgent I did everything at my expense, not being able to wait for the public service times. I had the exemption of the Lombardy Region, the D97, for only a short period, which absolutely did not cover all needs, and which then was also suspended before the scheduled deadline “.

Visible signs of the disease

Visible signs of the disease

Those who have not had a swab often do not have the diagnosis of Long Covid

Long Covid is not necessarily linked to the acute phase of the disease: there have been hospitalized patients who, after treatment and rehabilitation with adequate management, have gradually resumed their previous life, and patients, even in their twenties, who have had a mild form of the infection and over time have developed the symptoms of Long Covid.

But the majority of Long Covid patients were not hospitalized in the acute phase, and still reported severe multiorgan sequelae that require serious care and monitoring over time. Damage to the immune system with triggering of autoimmunity and immunosuppression, cardiopulmonary damage that limit functional and working capacities, viral reservoirs that make the virus persist in the intestine and impaired blood clotting with the development of microcoagules have been demonstrated .

Many people who weren’t tested in the first wave were not recognized as Covid patients, nor were they subsequently considered Long Covid patients. In short, those who have not received the swab in many cases have not even had the diagnosis of Long Covid.

In July 2021, the ISS issued initial guidelines on Long Covid, and with regard to the diagnosis it specified to also take into account all the people who did not have access to swabs and serologicals:

“Although the history of molecular or antigenic swab positivity and antibody testing for COVID-19 are helpful, these are not a prerequisite for diagnosis. This is because the availability of tests was very limited in the early stages of the pandemic (March and April. 2020) and since the antibody titer tends to decrease months after the onset of the disease “

What is the Long Covid Italia group

Rosa tried to seek social support from other patients like her who were suffering from persistent symptoms. And it is from this exchange of information between patients on social networks that the Long Covid community on social media was born, in the spring of 2020: “When there was nothing, it was we sick who made us feel, from below, to build a path”, we tells.

The movement was born with the hashtag ‘#LongCovid’, then taken up by all the countries where support groups are formed where patients meet, together with researchers and health personnel. The Long Covid Italia group was born in July 2020, and comes into contact with other foreign groups and with the World Health Organization. The first recognition comes in August 2020, with the WHO officially defining the Long Covid pathology. Gradually a European network is created, and Long Covid Europe is born, which collaborates with the WHO regional office for Europe. At that point the group is formally structured and gives life to the Long Covid Italia association. “Hundreds of people have joined – tells one of the founders, Marta Esperti, also suffering from Long Covid – but the patients are many more. In the group we are practically all patients of the first wave. Many of us have among the 30 and 40, the oldest are 50 “.

“We ask that there be an official institutional communication from the Ministry of Health on the existence of this disease, because it cannot be only the task of civil society to raise awareness on the issue”.

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