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I work as a research nurse in a large NHS trust and my role involves recruiting patients and healthy volunteers for clinical trials.
When studies on the novel coronavirus were implemented, I found myself regularly visiting the isolation wards. This involved face-to-face contact with Covid-19 positive patients to discuss research involvement, and collect blood samples and nasopharyngeal swabs. Full personal protective equipment was available and I felt reasonably protected. At the age of 39, and with no chronic diseases, I never felt in any significant danger.
I experienced the first symptoms of Covid-19 at the beginning of April – shortness of breath and mild cough. I was not worried and expected to be back to work fairly soon.
Instead, three weeks later, I was still self-isolating and struggling to look after myself on my own. I was experiencing constant shortness of breath and felt like I was drowning in the fluid in my lungs. I had palpitations and chest pains, felt dizzy, light-headed and had constant brain fog. But the worst of all was the insomnia and the constant feeling of being switched on. I wasn’t sure what was going on, this was nothing like the flu-like illness I was expecting. I felt it was time to seek medical help, only to be told that nothing would be done for me unless I went into respiratory failure. As it proved later, this was the beginning of my lonely battle with Covid-19.
“Being a nurse, I am perhaps in a better position to advocate for myself, but I still don’t find it easy”
Although some of my symptoms have now improved, I can still only walk for two to three minutes before shortness of breath forces me to stop. I am housebound and need to plan all housework and self-care in advance. It has been very difficult to adjust to living with limited physical ability, and, sadly, not the only obstacle I have had to overcome.
Being a nurse, I am perhaps in a better position to advocate for myself, but I still don’t find it easy, nor do I believe it should be necessary. Before every contact with a doctor, I have had to carefully research all new information regarding Covid-19, as well as other conditions that could relate to my symptoms. I had to write down my arguments in advance, in case I became upset or distressed (which was often the case) and forgot them.
I knew that I had done everything I could do to make myself better and that I am not well. In the past few months I have had to visit the emergency department, and had seen a cardiologist in a community practice, and I was becoming increasingly concerned about my lungs. I could recognise that some of my symptoms resemble airway inflammation, which could be amenable to treatment and I felt that this could be my only hope for improvement. However, it took six months to be prescribed an inhaler and have a CT scan. It is likely that the delay means that I am now left with irreversible damage to my lungs.
This makes me wonder how many other patients with “mild” Covid-19 have been struggling with organ damage. The preliminary results of the COVERSCAN study and many publications from around the world, exploring MRI imaging of internal organs, now suggest that Covid-19 is a multi-organ disease. Inflammatory changes, that could explain functional deficits, are found even in people that appear well. Moreover, with polymerase chain reaction (PCR) tests being very time dependent, unreliable antibody tests and the wide variety of Covid-19 symptoms, it may be difficult initially to discern between Covid-19 and other illnesses, especially in the winter.
It remains as important to save lives as ever, but it is time that we turn our attention to the patients in the community. I hope that my experience shows that access to diagnostics is not a wasted resource and can at least direct the patient to the right support or rehabilitation. The only resource we should not waste any more is time.
Nora Dimitrova is research nurse, University Hospital Southampton