“I’ve been having COVID-19 symptoms for over 50 days without relief”

BarcelonaTheir experience with the disease has shown doctors that 80 per cent of COVID-19 cases are either mild or less serious and, generally speaking, most patients go on to recover within five to ten days. However, as time goes by health care professionals are beginning to notice that some patients continue to exhibit symptoms well beyond that time: they feel unwell, have a slight temperature, feel tired, have a cough, complain of chest oppression or shortness of breath, in some cases for weeks on end. Several such patients have spoken to this newspaper about their situation: because they weren’t admitted into a hospital, they haven’t been tested and have not received any of the treatments that other patients are given. The pathologies they present with while in self-isolation at home are often incapacitating and they are dismayed by the lack of a response.

“I’ve been having COVID-19 symptoms for over 50 days, with no relief”, says Lara, a 45 year-old Eixample resident in Barcelona city. On March 17, shortly after her partner was taken to hospital with COVID-19 (he has been discharged since), she began to run a fever, experienced chest pain and merely speaking would render her out of breath. Since then her symptoms have fluctuated from one week to the next, but have not abated in any way. Many days she has remained bed bound. Following the instructions given by her primary care centre, she has been to hospital up to five times, first in Hospital Dos de Maig and then in Sant Pau. Doctors listened to her chest, gave her X-rays, ECGs and, eventually, on Thursday last week —more than seven weeks after her symptoms began— Lara was given a serological test to find out whether she had caught COVID-19. Arrangements were also made for her to have a TB test. They still haven’t been able to ascertain what is wrong with her.

Feeling misunderstood

Lara feels “misunderstood”, a sentiment shared by Àngela, a 37 year-old Farró resident, in Barcelona’s Sarrià-Sant Gervasi district. “COVID-19 likely or possible” is the diagnostic she was finally given after the onset of her fluctuating symptoms on March 22. Together with a slight temperature, she presented with shortness of breath, fatigue, chest pain and oppression, headaches and diarrhoea. The emergency service at Àngela’s primary care centre and in Hospital Clínic gave her similar tests to Lara’s and prescribed paracetamol, home rest and “keeping her chin up”, she explains. By Friday last week her headaches weren’t as bad and she was generally feeling better, but her shortness of breath persisted. “My primary care centre told me there are some of us who feel this way and they don’t know why. They haven’t looked into our cases yet”, she claims.

Àngela’s account matches the description given to this newspapers by primary care and hospital doctors. Nani Vall-llossera, a GP working in Bon Pastor, says that “we are well aware of these cases and there are perhaps five or six of them in every primary care centre”. He adds that “these patients cannot be classified as serious cases, but their symptoms are incapacitating” and he admits to feeling “somewhat at a loss”. “For now we do not have an answer for these patients. We don’t know what to do about them. They’ve cropped up as time went by and despite presenting mild symptoms and testing normal, they do not get better”, Meritxell Sánchez-Amat agrees. She is a primary care doctor in Besòs and the chair of the Fòrum Català d’Atenció Primària. According to Joaquín López-Contreras, the head of infectious diseases at Hospital de Sant Pau, doctors have several working hypotheses: these patients might be experiencing an inflammatory reaction to the virus, exhibiting the sequelae of the illness or even having other unrelated conditions. He believes that it’s only “a matter of time” before theses patients get better and he admits that “there isn’t much we can offer them”. Lourdes Mateu, a doctor with the infectious diseases unit at Hospital Germans Trias i Pujol, says it is “crucial to rule out any other major pathologies and not overlook anything. Once that has been discarded, we need to wait and be patient”. Dr Mateu believes these cases deserve to be studied.

Antoni Sisó, a doctor at the Les Corts primary care centre and the chair of the Catalan Society of Community and General Practitioners, believes that in the face of persisting symptoms, these patients should have been tested “to find out whether they had the disease or not” and he points out that primary care centres, which deal with mild cases, didn’t have the means to administer CRP tests for a long time. In the case of patients who have presented with symptoms for forty or fifty days, Dr Sisó thinks they should have been given a serological test to determine whether they had had COVID-19 or not and whether they are now suffering from chronic sequelae. “Each case must be looked into”, he says.

Natàlia, a 50-year-old patient from Gràcia (Barcelona) opted to pay for a serological test herself after “a rollercoaster” of symptoms. For the last two months she has had a slight temperature, a dry cough that leaves her voiceless, and fatigue. She also lost her sense of smell and taste for a few weeks, a symptom of the coronavirus. “I paid for the test myself and it turns out I carry the antibodies, which means I must have got the virus at some point”. This meant Natàlia was better informed, but she didn’t get better. On Thursday she want back to Hospital de Sant Pau and had another serological test, which came out positive. As she was feeling worse, on Saturday she paid the hospital another visit and insisted until she persuaded them to give her a CRP test. She was sent home and has been prescribed paracetamol and metamizole until her test results are available.

Most cases in A&E

The head of Accident and Emergency at Hospital de Sant Pau, Mireia Puig, admits that “most cases” they are seeing now are patients who present with persistent symptoms or are taking longer to recover from the disease. Many complain of fatigue, have a temperature, chest pain or extended respiratory issues, which could be the pathological manifestation of pneumonia, she says. And, unless they need to be admitted, patients are advised to go home and get back in touch, if they get worse.

Andreu (not his real name) is a 12 year old boy from Badalona who was admitted to Hospital Germans Trias i Pujol last week after several bouts of dry cough, which caused a tear in his lungs, having had a slight temperature and a headache since March 17. Four weeks after the symptoms developed, he tested negative, also for kidney failure and infectious mononucleosis. He was eventually discharged, after two days in hospital and seven weeks of symptoms. Now his mother wishes he had been tested for COVID-19 earlier. “Had we known that he did not have it, we could have spared ourselves an emotionally draining self-isolation (…) But I understand we weren’t a priority because my son’s case was not severe”, she says.

All the witnesses we have spoken share the same feeling. Lara says she felt “left to my own devices” and that they are “recovering worse than patients who were in intensive care”. She cannot see the light at the end of the tunnel. “I keep thinking: am I a severe case or not? When will I be able to stop worrying about the fact that I cannot talk and breathe?”, Àngela asks herself. Natàlia wonders if she will “be like this for the rest of my life”. Some doctors argue that we know little about the disease at present, but sources in primary care who have asked not to be named are critical of the way long-term patients have been dealt with: “many caught the virus at the start of the pandemic, but were neither admitted into hospital nor given medication because they were classified as mild cases […] But they have presented with symptoms all this time, they’ve not got over COVID-19 and since their ordeal began they’ve not got their health back and cannot have a normal life”, they say. They conclude that “the health service has offered them neither a treatment nor promised to study their case”.