Living with a lung condition during the COVID-19 pandemic: patient stories

The current pandemic is a frightening time for us all, but it can be especially nerve-wracking for those already living with lung conditions. The European Lung Foundation has compiled 4 stories from individuals living with pre-existing lung diseases, and their experiences living through this period. One contribution is from an aspergillosis patient and co-founder of the Aspergillosis Trust, Sandra Hicks, and has been copied below. To read all of the contributions, or share your own experience, click here.

The Aspergillosis Trust has also continued to collect and share the experiences of those living with aspergillosis during this time. To read and share stories, or find out more about the Trust’s work, click here to visit their website.

Sandra Hicks:

During the last weekend of February 2020, I had a bit more of a productive cough than usual. I stayed in bed, as I felt even more fatigued than usual and that’s already a lot! I have aspergillosis, Nontuberculous Mycobacteria (NTM), asthma and bronchiectasis colonised with Pseudomonas. The reason for these unusual infections is a rare primary immunodeficiency (PID) syndrome, which means that my immune system doesn’t make antibodies very well.

On 1 March, I had a severe pain in my right side, it felt to me like I had pulled a muscle between my ribs and another in my neck. The pain was so bad that I could hardly cough and I certainly couldn’t breathe in deeply. I also had worsening shortness of breath. I realised it was better to get on top of the pain, to be able to clear my lungs. I had a productive cough, not a persistent, dry cough as listed in the COVID-19 symptoms. I felt it didn’t really match with the description of the ‘red flags’ for COVID-19. I didn’t have a sore throat at any point. I did have a high temperature, which went up to 39.5°C during the first week of March. I also had headaches and dizziness, but didn’t lose my sense of taste or smell. The final symptom was coughing-up dark red, thick mucous (haemoptysis) a few times a day, for several weeks. I have never had haemoptysis to that extent ever before, or that dark a red (although the mucous can sometimes be ‘pinky’ in colour).

My routine CT scan which I have for the aspergillosis showed improvements and did not reflect the development of haemoptysis. So it seemed to me like something else was going on in addition to the usual lung problems.

I had phone consultations instead of outpatient clinic appointments with two consultants. The first one was with my mycology consultant on 25 March. He felt that it was possible that I could have had COVID-19. We discussed options for my regular treatment. Should I go into hospital daily for my 14 days of IV caspofungin, or should I delay treatment? Even if I hadn’t had COVID-19, I am in the shielding category and had been advised to stay at home for 12 weeks. The balance of risks were in favour of starting treatment sooner. This was due to the lower numbers of cases of COVID-19 in the UK at that time, compared to the rest of Europe. I was concerned that if we followed the same pattern as Italy, Spain and France, then in the next 2-3 weeks, the number of cases and deaths would rise hugely. When that cycle of treatment started on 30 March, there were 1,408 deaths from COVID-19 reported in the UK. On Easter Sunday, 12April the last day of treatment, there were 10,612 deaths reported in the UK. It was a very scary time, having to go into hospital daily during those two weeks. If I had delayed treatment, the hospital might not have had capacity to treat me. My lung condition could also have deteriorated. I may have been at greater risk of catching COVID-19 too. Looking back, it turned out to be the right decision for me.

My immunology consultant also said on 27 March in another phone appointment, that it was possible I’d had COVID-19. However, there is no way of knowing for sure if I have. COVID-19 blood tests look for the presence of antibodies produced by the immune system. If these antibodies are present, then that means a person has had the infection in the past. However, these tests might not be accurate in people with primary immunodeficiency syndromes, because we don’t always make antibodies properly. The consultant said that they do not yet know for sure whether having COVID-19 means that you will develop immunity. He also said that if patients need to come in for procedures then they take measures to prevent infection: they pull the curtains in between beds, everyone wears masks, staff also wear aprons and gloves.

So, I still don’t know if I have had COVID-19, but it is possible! I will probably never know either. If this was mild or moderate COVID-19, it was still bad enough on top of the usual lung conditions.

It is an incredibly sad situation that so many people have lost their lives prematurely. The current total number of deaths in the UK is 34, 636 (18 may). It’s so important to stay at home for those of us with lung disease, who are most at risk. I personally don’t see a ‘quick fix’ for this pandemic and it is possible there will be a second and third wave. I am looking forward to the vaccine being available, so it protects more people.