Introduction to the Rollercoaster
The last photo taken before Covid, the start of the Covid Rollercoaster
Welcome to my Long Covid Blog Series. I have been asked by many of my patients where they could read my story of being a Cardiorespiratory Physio recovering from Long Covid but I have not had the time and energy to bring everything together, until now! Over the next few posts, I will take people through my own personal journey but also try to bring in some learnings and resources for people to take on if they are suffering from similar Post Covid problems. I have now worked with several hundred patients with Long Covid and recognise that we all have different experiences and that not everyone is the same as me so I will try to also bring in some anonymised anecdotes from other patients to highlight problems that I have not personally suffered but have come across professionally. Recognising that many patients have Brain Fog and struggle to concentrate on long articles (sorry, this one is quite long), I will include the main points of each article in a summary box at the end so it’s easy to jump to the important take-aways without cognitive overload.
Background and need for investigations.
I had always planned that the year 2020 would be a year of change for me, it turns out it was, but just not in the way I had planned! I had been working at The Wellington Hospital in London for 13 years as a Cardiac and Respiratory Physiotherapist. As well as working full-time, I was spending 3 hours a day traveling to and from work from our home in Essex whilst also seeing patients privately in the evenings and training for marathons - I had done every London Marathon since 2001 completing the 2019 version in 2 hours 49 minutes at the age of 46. Add in a busy family life with a pony mad daughter and all that involves, it’s fair to say that, like many Long Covid patients I have treated, life was fairly full on.
By early 2020 and having realised this lifestyle was not sustainable anymore, I had made the decision to go part time, build up local private work and regain more of a balance to life. By mid-March, everything was heading in the right direction with my plans to go part time approved from 1st April.
Life was looking good as news was filtering through about a new virus that had originated in China but was now in Europe and Italy was being particularly badly affected as I prepared in March to go part time and take on my 20th London Marathon. There was lots of uncertainty in healthcare and in society in general about what lay ahead which led to The London Marathon being cancelled just before the Brentwood Half Marathon in mid-March. I was in good shape so decided to run the half marathon anyway but kept my distance from people at the start and end of the race, no hand shake, hugs or hi-fives this year. I completed the race in a respectable 1 hour 24 minutes which was my goal for a sub-3-hour marathon which I was delighted with given my reduced training.
The following day I got on the tube at the first stop as usual and took my usual seat for the journey and despite encouragement to keep socially distanced and cough into our elbows, the tube was packed with a couple of people unapologetically coughing, but as they were more than 2 metres away, as per the guidance then, I thought I was ok. Like many people, I will never know if I picked up the virus on the tube, at work or somewhere else.
The Covid Rollercoaster Begins
The key symptoms we were told to look out for at that stage were increased temperature, irritable, continuous cough and loss of taste and smell. The week after the half marathon I was just not recovering as I would normally do but had none of the above symptoms, just general aches and fatigue with really bad headaches. On the morning of 19th March, I woke early with a terrible headache and fatigue like I had never experienced before. Still no cough or temperature so we put it down to stress and headed off to finish the week at work not knowing that that would be the last time I would do a full week’s work until 2022!
I arrived at work on Monday 23rd March 2020 to discover that a patient on the ward had tested positive and that all staff who had worked on the ward in the previous 5 days were to be tested. I initially protested as I had not been in contact with the patient and was feeling better compared with the previous week, but the infection control nurse insisted so proceeded to my first of many PCR tests. That night the lack of social distancing on the trains was awful and it was clear that many people were not taking the emerging warnings seriously. We had been issued with letters stating that we were essential workers and warned we would need these to access the public transport network when the inevitable Lockdown came into force as had been the case in other countries. That night I cheered as Boris Johnson finally announced that the country would go into a national lockdown and that public transport would be reserved for “essential worker only”. Unfortunately, this was not enforced and many people did not pay attention to these rules so the morning of the 24th March was no difference to the day before, much to my frustration.
At the end of work that day, having felt the best I had felt in over a week, I received a call from my manager. He had just been informed by the Chief Nurse that I had tested positive and that I should go home and isolate, as should my family - I don’t know if my daughter was more upset at dad not being well (although I looked fine) or not being able to see her beloved ponies for 10 days! She had started home schooling; my wife was already working from home and now I was confined to the spare room so a stressful time all round.
Friday 27th March was probably my worst day, I was feeling fatigue that I had never experienced before so was ordered to the garden by my wife to get some air. I tried to prune the bushes but found that my shoulders were burning and I was short of breath so took a seat on the bench. My daughter came out to join me and found me sound asleep 2 minutes after I sat down which was completely out of character. She woke me and I got up to tidy up but then found myself on the floor having fallen over. I laughed it off then it happened again. I sat down again and fell straight to sleep once again. I went back into the house and struggled to climb the stairs, a massive change from the half marathon less than 2 weeks previously. Colleagues who were working in A&E at the time later told me that this was a typical presentation – young fit people with no outwards signs of low oxygen levels but when they put the oxygen meter on them, they were promptly wheeled to critical care. It was termed “Happy Hypoxia” where patients with critically low oxygen levels presented with a good colour in their face, talking in full sentences and walking about, but everything just didn’t feel right. Many colleagues now feel that this may have been the case with me but with no oxygen meter available at the time, we’ll never know.
Over the next few days, I gradually got stronger and was told that I would have to return 2 negative PCR tests before returning to work as we were going to be a “clean hospital” to take urgent NHS surgical cases. I drove into London to get my tests to find deserted streets and an eerie atmosphere. My first test came back negative so off for my second one then back to work, right? Wrong! The second test came back positive which really hadn’t been heard of at that stage as I was more than 2 weeks past initial symptoms plus many people were being told to go back to work without being tested as they were presumed negative. Leave it a week then retest, the second test that week was my birthday and I celebrated with a gentle jog as I had been reading about the early guidance for return to exercise and knew I had to take it easy. My daughter joined me on her bike but cycled ahead and there was no way I could keep up with her – my legs were burning and I was getting chest pain so had to stop and walk. The symptoms settled and I was just left feeling tired so posted a message on Facebook thanking people for their birthday wishes and letting people know what had been happening.
Don’t push through and get investigated
Ready for birthday cake and looking ok an hour after experiencing chest pain on my run and now pain free, but things just didn’t feel right despite external appearances
Having seen this, an ITU consultant I used to work with contacted me and warned me that this was a nasty virus, not something to push through and that I probably needed some testing to exclude anything underlying. I took it easy over the Easter weekend that followed, returned to work on the Tuesday after my double negative results but just felt exhausted. My Clinical Director whom I’d known for years told me to contact Occupational Health as they had been given new powers to refer to consultants rather than having to access the hospital Private Health Insurance Scheme via GP referral. On Wednesday 22nd April I was reviewed over the phone by an OH doctor who was satisfied that my symptoms warranted further investigation and was happy to refer me to a Respiratory Physician as long as the Private Health Scheme would accept this which fortunately, they did. My colleague of many years and Respiratory Physician Prof Howard Branley agreed to speak to me that afternoon but asked me to take a set of observations before our session, both at rest and after climbing 40 steps. My blood pressure, heart rate and oxygen levels were all normal but I was left very short of breath and fatigued after the step ups and developed pain between my shoulder blades which was still there and indeed radiated to my waist and neck by the time I spoke to him formally 2 hours later. He was satisfied that although there were no clinical indications from my observations, my symptoms reached a threshold needed to justify putting me through a CT scan to check if there was any issue with my lungs as many Covid-19 patients had been developing inflammation.
The scan was a CTPA (CT Pulmonary Angiogram) which included getting contrast solution into my arm which I was warned would give a warming feeling throughout my body. 10 minutes observation and that was me heading home to receive the result the following day, the benefit of working for a private hospital. As I drove home, I was only about 15 minutes from the hospital when I received a call from Prof Branley’s secretary to say he wanted to speak to me urgently as they had the result of my scan back already - I knew that wasn’t to tell me all was fine so desperately tried not to catastrophise on my drive home. At 12noon I heard from Prof Branley to inform me that I had a blood clot on my lung – it was unclear if this was a primary thrombosis originating in my lung or a pulmonary embolism that had travelled from another part of my body, however either way I required to go onto anti-coagulants to thin my blood and had arranged this with my GP whom he had already spoken to and they would be in touch to arrange my prescription. He admitted that he was surprised to find a blood clot but that Covid was behaving in different ways to other conditions. He also felt that my fitness had probably kept me out of intensive care whilst also masking just how unwell I was. He said that the key thing was that I was able to give him precise information about my symptoms compared to my normal rather than just saying I didn’t feel right. This is something I have told many patients over the years, if you are going to the doctor make sure the symptoms you are reporting are specific and how they are different to your normal. This makes it easier for your doctor to order the most appropriate investigations, reach a diagnosis and give you the most appropriate treatment.
The day after being diagnosed with a blood clot in my lung. Everyone said I looked fine but I could feel that things were just not right, so glad I pushed to get investigated.
Over the next 24 hours I heard from my GP and his receptionist, had an ECG and Echocardiogram at The Wellington Hospital, blood tests at St Margaret’s NHS hospital and my prescription for Rivaroxaban dispensed by my NHS Pharmacist. I feel very humbled and fortunate to have had my hospital OH department, Private Health Scheme, Consultant, Imaging Department, NHS GP, phlebotomy and pharmacy all working together in my best interests at a time when many people were struggling to get any appropriate investigations.
The Rollercoaster Continues
I had a follow up with the Cardiologist about a month later and having been on blood thinners for a few weeks and been cleared to go back to light jogging. I had a very different presentation of chest pain, a crushing sensation up to my throat. I was told they could do a stress-echo to give me some reassurance as I was probably just being over ambitious. I opted for the treadmill rather than drug version of the stress echo and reproduced the symptoms I had felt, which turned out to be pericarditis (inflammation of the sack around the heart) – so not just me being anxious then! I was started on Colchicine for 3 months and after a few weeks was again told I could start running again but take it easy.
By late July, my progress had stopped and I was heading backwards despite doing less and less. I had been used to doing 20 miles at 7 min/mile so to do 3 miles at 10 min/mile was taking it easy, but not easy enough. I was offered a second opinion by another doctor colleague and after a multitude of tests (Lung function, cardiac MRI, CPTA, Echo, blood tests), nothing else was found other than what Prof Branley had already discovered and treated. I was then in the position of many people I have treated since – lots of symptoms and yet all the tests performed were normal. Post Covid Syndrome (Long Covid) is a diagnosis of exclusion whereby all other explanations for the symptoms have been ruled out so the diagnosis is reached on symptomatic presentation. I was told that there was no medical cure to my Chronic Fatigue presentation of Long Covid and was given some lifestyle advice and told that if it was anyone else, they would be referred to me – I’d been treating Breathing Pattern Disorders and other niche areas for years as part of my job as a Cardiorespiratory Physio – ironic!
It became clear to me over the following months that most people had not been able to access testing, even fellow healthcare professionals working in the NHS were being denied testing, so goodness knows how many other people had similar problems to me and yet were living in ignorance. It’s tough work self-advocating when you are feeling unwell, but the reality is that unless you do it or have someone who can do it for you, nothing will happen until an emergency situation. As the years have passed since the early days of Long Covid, assessment and treatment services have been developed but vary massively from area to area. I hear of many people still struggling to get the investigations they require to exclude other possible explanations.
Since the initial wave with the acute virus producing milder symptoms and more people have been vaccinated, Covid has moved down the public agenda (even the Your Covid Recovery website closed on 1st April 2024) but there are still lots of people with lingering symptoms many months on. It is still important that people follow the current guidance and get referred to your local service for investigations and guidance if things are not fully resolved by 4 weeks after a confirmed or suspected Covid infection.
For up to date information in the UK go to Long-term effects of COVID-19 (long COVID) - NHS (www.nhs.uk)
For a wide range of Long Covid Resources including a short video series visit Resources — Long COVID Physio
Introduction and Investigations – Summary
Fit and healthy 46 year old male, busy London lifestyle
Cardiorespiratory Physiotherapist since 1999 and marathon runner & coach
Felt unwell in March 2020 but not with typical symptoms of Covid
Tested positive the following week and returned further positive test 2 weeks after symptoms started
Felt unwell on return to work but no clinical signs, just symptoms. CT scan showed up blood clot on lung and 4 weeks later Stress Echo showed Pericarditis
Following treatment of both problems and initial recovery, symptoms worsened over the summer of 2020 and was diagnosed with the Chronic Fatigue presentation of Post Covid Syndrome (Long Covid) after repeat testing largely was normal.
Self-advocating is exhausting when you feel unwell, but it was so important that I and many others have pushed for testing