Jill’s story

Arlene Brailey

I have become partially immunocompromised due to surgery, that included loss of my spleen, in March 2020. Since COVID-19 started spreading in the UK, I have become more concerned about my health as I now depend on effective prophylactic antibiotics – that is, antibiotics I take all the time to prevent infection – and may have to take for life.

Having had support from Arlene (in patient support) and read the stories of those who have suffered antibiotic resistance I wanted first to express my concern and sympathy for those who are currently suffering especially as this need not have happened if there had been sufficient care in the past in prescribing antibiotics and more research into new treatments. We have known about resistance since antibiotics were first discovered and, I saw this in my own experience as a dentist, when I worked in Hong Kong from 1975 – 1977. Antibiotics could be bought over the counter in Hong Kong with no prescription and we had patients experiencing antibiotic resistance which required significant dental surgery to eliminate their infections.

I believe Governments need to facilitate research with use of taxpayers money and charities like Antibiotic Research UK need to continue helping to make more people aware of this huge problem ahead. Also, people who currently have issues with antibiotic resistance also need to show how serious this problem is and why it’s a problem right now, and will only get worse in future without action.

What impact has loss of my spleen had on me during COVID-19

I am now at very high risk from encapsulated bacteria (of which bacterial pneumonia is one) as the spleen controls the body’s immune response to these bacteria. The COVID-19 pandemic has presented an additional risk for me too. I will have the normal (for my age etc) response to the virus itself but I am 70 next year so my immune system will not be as lively as when I was younger; however, it is the progress to a secondary bacterial infection like pneumonia which is worrying for me personally. Also, I am concerned about the harm that long term antibiotics may be doing to my own immune system. I spent over 3 months shielding during the initial stages of the pandemic, hoping we will soon have a reasonably dependable vaccine. Apart from my husband who is helping to shield me I miss physical contact with the rest of my family. I am thankful for current social technology of course but it is not the same. I was working in health care with close patient contact so I cannot foresee returning to dentistry for a long time, if at all, despite otherwise being physically fit. This makes me feel sad at times but that is balanced by my gratitude to be alive and the tremendous caring support I had in hospital.

What impact has this experience had on my family

My husband who is 70 has had to take on all external trips like shopping and my son is helping when he can. Thankfully he is still working from home as is my daughter in law but it is adding to their workload. Especially as I helped with childcare for the grandchildren. The children are also wanting physical social contact with us but will my prophylactic antibiotics work if I become infected with COVID-19 and then, perhaps worse, develop pneumonia? I know I will want to take the risk eventually but I also know it is not only me, as I could infect others.

Luckily, I am fairly resilient and not extremely afraid as I have seen many health scares come and go in my lifetime and I will be sensible as far as current knowledge advises. However, I am on long term prophylactic (preventive) antibiotics to which the bacteria may become resistant and I have so many questions I want to ask!

  • Why are there very few new antibiotics being developed as a replacement for ineffective ones?
  • Are so many dying with Covid because the antibiotics are not working if bacterial pneumonia follows?
  • Why are we still overprescribing what antibiotics we have left, just in case an antibiotic might work instead of testing its effectiveness against those bacteria first?
  • Will general life saving surgery and transplants have to cease if there are no antibacterials?
  • What about long-term low doses of antibiotics routinely used in the farming industry?

I believe this pandemic reminds everyone how fragile life can be, and hopefully provides a sense of urgency for developing new antibiotics/treatments for infections despite the cost. Many people are already suffering ongoing infections as no treatment is currently available, so I hope this really is a wakeup call for greater research with the governments’ and tax payers support. They are discovering that poor health and loss of life does not come on its own, in terms of the economic crisis, let alone the human loss with COVID-19.

My thanks go to Antibiotic Research UK for all they are seeking to do.