Kathryn Hedigan took part in the EXPLAIN study, which used hyperpolarised xenon MRI scans to investigate possible lung damage in long COVID patients who had not been hospitalised with COVID-19 but who continued to experience breathlessness.
Kathryn, aged 66, lives near Burford in West Oxfordshire. She is an enthusiastic bridge player and meets up every year with a group of like-minded women to play bridge.
“I used to know by heart all the bidding conventions in the form of bridge we play. I now literally have to read it before I play to remember because they’re no longer lodged in my brain,” she says.
“I struggle to remember names – or pieces of music I’m really familiar with.”
Kathryn has experienced brain fog – along with other long COVID symptoms – since getting COVID early in the pandemic.
“I had COVID in March 2020 and COVID pneumonia afterwards,” she explains. “I recovered but it took me quite a long time. By September, I realised I wasn’t getting any energy back. I couldn’t breathe properly. When I tried to walk the dog, I could only manage a third of my usual walk, and even then only with regular stops. I realised there was something lingering by I couldn’t put my finger on it.
She says that as time went by, she started to experience other symptoms: “I kept having really strong pins and needles from the shoulder blade to the tips of the fingers of my left hand – I called it my ‘taser arm’. And the fatigue – it was like boom and bust. You’d find a little bit of energy one day and do something and then you’d be wiped out for three days, feeling really grotty.”
“We need to know”
Kathryn attended the Oxford long COVID clinic and was asked if she wanted to take part in the EXPLAIN study.
“I decided to take part because there are so many people out there suffering without knowing why they’re suffering, and we need to know.”
Taking part in the trial involved lying in the MRI scanner and breathing in one litre of the inert gas xenon that has been hyperpolarised so that it can be seen using MRI. As xenon behaves in a similar way to oxygen, radiologists can observe how the gas moves from the lungs into the blood stream.
Breathing in the gas had unexpected benefits for Kathryn: “Oh, it was a lovely feeling – it should be on prescription. You feel instantly drunk, like you’ve had way more than you should have had. Unfortunately, it wears off far too quickly.”
She is complimentary about the long COVID clinic and the team who ran the trial: “They were brilliant. Every person I dealt with on the trial was delightful. The patience and kindness of everyone I met – especially the three poor ladies trying to get blood out of me!
“They pointed out things as we went along – they found a little nodule in a lung and made sure it wasn’t growing. They discovered that the mucus in my lungs and sinuses was thickening, and I am on a drug for life now, which I’m very grateful for because my breathing is so improved, I’m able to exercise again.”
Unfortunately, Kathryn got COVID again in late 2023, and her brain fog got worse, and her ‘taser arm’ came back. “The fatigue is better now, but the brain fog is lingering,” she explains.
She also feels that her arthritis has got much worse since she contracted COVID; where before she had it in her knee and hip, she now also has pain in her fingers and toes. In the coming months she is having knee and shoulder replacement surgery.
Kathryn has taken part in another long COVID-related study, which looked at patterns of molecules in the blood and urine to try and generate a test to determine if someone has long COVID and get a better understanding of the possible underlying mechanisms.
“My hope is that out all of these studies we will eventually be able to say, this will help people with brain fog or other long COVID symptoms.”
She says she would jump at the chance to take part in other clinical trials, whether relating to long COVID or Alzheimer’s, of which there is a history in her family.
“If people take part if they’re suffering with anything, it’s got to help, but with COVID in particular because it’s not gone away.”
The EXPLAIN study succeeded in identifying abnormalities in the lungs of long COVID patients who were experiencing breathlessness – these abnormalities could not be detected with routine tests.