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.

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.

COVID isolation: Mental well-being while staying at home

The UK NHS has released a list of helpful resources to assist in safeguarding your mental health during this current COVID isolation period. We have reproduced some of it here for the purpose of allowing indexing of the many sections, hopefully making access a bit quicker and easier.

Taking care of your mind as well as your body is really important while staying at home because of coronavirus (COVID-19).

You may feel bored, frustrated or lonely. You may also be low, worried or anxious, or concerned about your finances, your health or those close to you.

It’s important to remember that it is OK to feel this way and that everyone reacts differently. Remember, this situation is temporary and, for most of us, these feelings will pass. Staying at home may be difficult, but you are helping to protect yourself and others by doing it.

The tips and advice here are things you can do now to help you keep on top of your mental wellbeing and cope with how you may feel while staying at home. Make sure you get further support if you feel you need it.

The government also has wider guidance on staying at home as a result of coronavirus.

To read the complete NHS page ‘Worried about coronavirus’ click here

 

 

For a more complete resource on mental health see the NHS page ‘Every Mind Matters’.

EMM - Coronavirus - Stay at home - Find out about your rights

1. Find out about your employment and benefits rights

You may be worried about work and money while you have to stay home – these issues can have a big effect on your mental health.

If you have not already, talk with your employer about working from home, and learn about your sick pay and benefits rights. Knowing the details about what the coronavirus outbreak means for you (England and Wales only) can reduce worry and help you feel more in control.

GOV.UK: Coronavirus support

2. Plan practical things

Work out how you can get any household supplies you need. You could try asking neighbours or family friends, or find a delivery service.

Continue accessing treatment and support for any existing physical or mental health problems where possible. Let services know you are staying at home, and discuss how to continue receiving support.

If you need regular medicine, you might be able to order repeat prescriptions by phone, or online via a website or app. Contact your GP and ask if they offer this. You can also ask your pharmacy about getting your medicine delivered, or ask someone else to collect it for you.

If you support or care for others, either in your home or by visiting them regularly, think about who can help out while you are staying at home. Let your local authority (England, Scotland and Wales only) know if you provide care or support someone you do not live with. Carers UK has further advice on creating a contingency plan.

Carers UK: Coronavirus

3. Stay connected with others

Maintaining healthy relationships with people you trust is important for your mental wellbeing. Think about how you can stay in touch with friends and family while you are all staying at home – by phone, messaging, video calls or social media – whether it’s people you usually see often, or connecting with old friends.

Lots of people are finding the current situation difficult, so staying in touch could help them too.

4. Talk about your worries

It’s normal to feel a bit worried, scared or helpless about the current situation. Remember: it is OK to share your concerns with others you trust – and doing so may help them too.

If you cannot speak to someone you know or if doing so has not helped, there are plenty of helplines you can try instead.

NHS – recommended helplines

5. Look after your body

Our physical health has a big impact on how we feel. At times like these, it can be easy to fall into unhealthy patterns of behaviour that end up making you feel worse.

Try to eat healthy, well-balanced meals, drink enough water and exercise regularly. Avoid smoking or drugs, and try not to drink too much alcohol.

You can leave your house, alone or with members of your household, for 1 form of exercise a day – like a walk, run or bike ride. But make you keep a safe 2-metre distance from others. Or you could try one of our easy 10-minute home workouts.

Try a 10-minute home workout

6. Stay on top of difficult feelings

Concern about the coronavirus outbreak is perfectly normal. However, some people may experience intense anxiety that can affect their day-to-day life.

Try to focus on the things you can control, such as how you act, who you speak to and where you get information from.

It’s fine to acknowledge that some things are outside of your control, but if constant thoughts about the situation are making you feel anxious or overwhelmed, try some ideas to help manage your anxiety.

7. Do not stay glued to the news

Try to limit the time you spend watching, reading or listening to coverage of the outbreak, including on social media, and think about turning off breaking-news alerts on your phone.

You could set yourself a specific time to read updates or limit yourself to checking a couple of times a day.

Use trustworthy sources – such as GOV.UK or the NHS website – and fact-check information from the news, social media or other people.

GOV.UK: Coronavirus response

8. Carry on doing things you enjoy

If we are feeling worried, anxious, lonely or low, we may stop doing things we usually enjoy.

Make an effort to focus on your favourite hobby if it is something you can still do at home. If not, picking something new to learn at home might help.

There are lots of free tutorials and courses online, and people are coming up with inventive ways to do things, like hosting online pub quizzes and music concerts.

9. Take time to relax

This can help with difficult emotions and worries, and improve our wellbeing. Relaxation techniques can also help deal with feelings of anxiety.

10. Think about your new daily routine

Life is changing for a while and you are likely to see some disruption to your normal routine. Think about how you can adapt and create positive new routines and set yourself goals.

You might find it helpful to write a plan for your day or your week. If you are working from home, try to get up and get ready in the same way as normal, keep to the same hours you would normally work and stick to the same sleeping schedule.

You could set a new time for a daily home workout, and pick a regular time to clean, read, watch a TV programme or film, or cook.

11. Look after your sleep

Good-quality sleep makes a big difference to how we feel, so it’s important to get enough.

Try to maintain your regular sleeping pattern and stick to good sleep practices.

12. Keep your mind active

Read, write, play games, do crosswords, complete sudoku puzzles, finish jigsaws, or try drawing and painting.

Whatever it is, find something that works for you.

15th May 2020: Shielding advice to continue until the end of June.

The original shielding letters and advice that have been sent out to people who are highly vulnerable to COVID-19 (coronavirus) infection stated that all recipients of the letter should completely isolate themselves from physical contact, not go outside of their homes for 12 weeks.

This advice was sent to all patients of the National Aspergillosis Centre (NAC) who have chronic pulmonary aspergillosis (CPA).

Patients who have allergic bronchopulmonary aspergillosis (ABPA), severe asthma and forms of aspergillosis other than CPA were informed of their vulnerability status by their local respiratory clinic or GP. Some will have been told to shield, others not but all shielding advice was to remain in place for 12 weeks from the day of receipt of the letter.

That advice for people shielding has now been amended to say that all shielding people should continue shielding until the end of June 2020.

Latest shielding advice (UK).

Latest advice from Welsh government

Latest advice from Scottish government

Latest advice from Northern Ireland

May 11th 2020: UK Government updated advice for vulnerable people during the COVID-19 epidemic

General population

Now that an overwhelming peak of COVID-19 cases has been avoided in the UK, at least for the time being UK government has advised the UK general population that:

  • People and employers should stay safe in public spaces and workplaces by following “Covid-19 secure” guidelines. This should enable more people to go back to work, where they cannot work from home, and encourage more vulnerable children and the children of critical workers to go to school or childcare as already permitted
  • You should stay safe when you leave home: washing your hands regularly, maintaining social distancing, and ensuring you do not gather in groups of more than two, except with members of your household or for other specific exceptions set out in law
  • You must continue to stay home except for a limited set of reasons but – in line with scientific advice – can take part in more outdoor activities from Wednesday 13 May

See the full document for details

A large group of people, assessed as particularly vulnerable must take further action and observe the following additional guidelines:

There are two classes of people referred to as vulnerable. These are the ‘vulnerable’ and the ‘highly vulnerable’. There are new instructions for both groups (HM Gov update 11th May 2020)

Vulnerable people

Clinically vulnerable people are those who are:

  • aged 70 or older (regardless of medical conditions)
  • under 70 with an underlying health condition listed below (that is, anyone instructed to get a flu jab as an adult each year on medical grounds):
  • chronic (long-term) mild to moderate respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
  • chronic heart disease, such as heart failure
  • chronic kidney disease
  • chronic liver disease, such as hepatitis
  • chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), or cerebral palsy
  • diabetes
  • a weakened immune system as the result of certain conditions, treatments like chemotherapy, or medicines such as steroid tablets
  • being seriously overweight (a body mass index (BMI) of 40 or above)
  • pregnant women

In addition, there may be people who do not fit in any of the categories listed above, but who have been advised that they are clinically vulnerable by their GP or other health professional.

All people who fall into this category must stay at home as much as possible, and take particular care to avoid contact with others outside of their household if they go out.

 

Highly vulnerable people

This is the group who have received a ‘Shielding letter’ or other instruction from a medical authority such as their GP. Their updated instructions do not seem to have been substantially changed and can be found here. This group of people need to stay at home, do not go out, keep shielding. The Government is currently advising people to shield until the end of June and is regularly monitoring this position.

FAQ’s

What you can and can’t do

Shielding

Does easing restrictions apply to healthy 70 year olds and over? (see section 2)

How long will shielding be in place? (see section 2.2)