A doctor who fell seriously ill with coronavirus at the start of the pandemic later discovered multiple blood clots on his brain that could have proved fatal.
His conditioned worsened when he began suffering breathing difficulties and an extreme brain fog that caused all his days to blur into one, Wales Online reports.
He said his “frightening” symptoms continued for several months, with the 62-year-old also dealing with irritable bowel syndrome, disruptive sleep and difficulty with coordination – leaving him a shadow of his former self.
Dr Frayling was invited to meet the Senedd’s health committee in March 2021 to give evidence of his battle with long Covid.
It led to a respiratory consultant reaching out to him and offering him a full clinical assessment at the University Hospital Llandough.
Not only did she find problems with his heart and blood pressure, which were to be expected, but a referral for CT scans in May 2021 revealed that he was living with several blood clots in his brain which were very likely to be attributed to the after-effects of coronavirus.
It meant suffering a catastrophic stroke was highly likely.
“The consultant looked sobered up as hell. She glanced down at the report and told me ‘I can’t believe you’re still here’,” recalled Dr Frayling, from Ystradowen, Vale of Glamorgan.
“I had severe clotting in the big vein down the centre of my brain, in the two big veins either side and clotting extending down into the big vein that goes into my neck.
“It was just incredibly shocking. This condition comes with a 50% mortality. This is something that you’re not messing around with. This is bloody serious. My wife could now be a widow and my daughter not have a father.”
After being given the deeply distressing news, Dr Frayling said his mind began turning to other people with long Covid who may be experiencing similar neurological symptoms but are waiting many months to be referred to see a specialist doctor by their GP.
“The consultant used her clinical skills and expertise [to properly assess me and give me a CT scan]. I’m one of the lucky ones. A GP can’t directly send people off for these kind of tests, so there could be thousands of people with long Covid, just like me, who aren’t getting the help they need and are just being fobbed off.”
Dr Frayling, a retired NHS genetic scientist, said he was given the blood-thinning medication warfarin to try and reduce the significant clotting in his brain.
While he was deeply hesitant about taking it at first, he said its impact on him was profoundly positive.
“About two weeks after I’d started taking it I felt so much better in all respects. I felt better within myself, I could think better, I was brighter, I was having spontaneous scientific thought which I hadn’t had for more than a year,” he added.
“It was as if I’d bobbed to the surface after spending months below it. It was totally unexpected.”
Dr Frayling, an international expert in hereditary cancers, believes that medicines that help prevent blood clots – known as anticoagulants – could be the answer to many people’s long Covid symptoms.
He added: “We’ve known for a year-and-a-half now that the major mechanism by which Covid kills you is that it causes clots in all sorts of major organs, so why should we be surprised that some poor souls are going on to have prolonged abnormalities?
“People with long Covid all have different pathology going on, but we do fit a sort of pattern. It all starts to hang together.”
Dr Frayling, who also suffered a damaged liver and pancreas, an enlarged spleen and lost about a third of his right lung function, said there is now justification for introducing specialist long Covid clinics in Wales.
Long Covid clinics were opened across England in November 2020, and this month Northern Ireland announced it would be following suit.
However the same plans are not in place in Wales or Scotland.
“You cannot expect GPs to become specialists in long Covid as they will probably only see a handful of patients. It is unsafe to expect GPs to deal with the complexities,” he added.
When he went through the consultation at University Hospital Llandough, Dr Frayling said he found himself breaking down as he was finally finding out what was wrong with him.
“It was a cathartic experience. I finally felt like I was in a safe place. I was finally in contact with someone who had their finger on the button. It was massively reassuring and it did a huge amount for my morale,” he added.
After clots were found in his brain, Dr Frayling was given an appointment with the Community Brain Injury Team (CBIT) at Rookwood Hospital in Llandaff North in June 2021 where he was seen by the head of neurology.
“Even though the warfarin helped in so many ways, I still felt a bit clumsy, I had a feeling of unsteadiness and I had a tendency to drop small things. I also struggled at times to find my words,” he added.
“I was told this was a common thing in people who had suffered brain damage. I’ve had to accept that I’ve suffered a brain injury and that some of these symptoms will never get any better.
“It makes you wonder how many other people have had brain damage too and have no idea. That’s what really upsets me.”
Dr Frayling still has a constant sore throat and sinusitis and continues to take aspirin as well as a H2-blocker which “keeps the lid” on other symptoms.
A follow-up CT scan revealed no signs of blood cots in his brain.
He added that long Covid services need to be directed at those who are younger, who were previously fit and healthy and who never needed a hospital admission.
“This is a frightening, depressing and anxiety-inducing disease, but the moment you get seen by a proper doctor with the right expertise, all that gets lifted off your shoulders.
“If you treat the underlying cause the job’s an easy one.”
The Welsh Government has invested £5m in long Covid services and clinical pathways. A Covid recovery app has also been created to help people manage their symptoms.