Myocarditis Diagnosis 13 months after Acute Covid-19

This is Tim, my partner’s, Covid-19 story-

"Hi, I’m Tim. In April 2020 I caught Covid from Kerry. I had the classical symptoms of

cough, chest pain and shortness of breath. I would have to lie down after just walking up one flight of stairs. I didn’t have a fever or really have to take to my bed. My smell and taste were fine. These symptoms lasted for about two weeks then dissipated over another two. The breathlessness and chest pain persisted but to a lesser degree. I was able to work full time but it was difficult to talk for long periods of time, especially if walking, or carry heavy loads without feeling extremely short of breath. I was still taking Kerry to her appointments in London but I felt really fatigued afterwards.

A few months later in August I was driving and I had sudden left sided chest pain and tightness, pain in my upper back and shoulder, an aching jaw and tingling in my left hand. I really thought I was experiencing symptoms similar to a hear attack. I spent the day in my local Accident and Emergency department having investigations. I had a chest X-ray, ECG and bloods. My potassium levels were low so I was put on an IV drip but no cause for the chest pain was found and I was discharged home. I had a follow up call with a consultant cardiologist who put my chest pain down to “stress”. I tried to emphasise that my partner had had Covid-19 with heart involvement ( Microvascular Angina) but he didn’t want to entertain this. This was incredibly difficult, I knew it wasn’t stress related and I felt somewhat hopeless at this point.

In October I had started to feel a lot better and had started to run again. I noticed that during the run my heart rate went really high and then it would take hours to settle down afterwards. Even when I was at my most unfit this had never happened before. Towards the end of October I developed a cough again and my breathlessness was much worse. I contacted my GP, as I was concerned, and on the advice of my partner, Kerry, wanted to rule out myocarditis. The doctor advised it was incredibly unlikely to be be myocarditis, it was ‘just long covid’ and he could not offer me any further help, putting my high heart rate down to probable lack of fitness.

The cough, chest pain and shortness of breath continued and then, in December, after a few 4 mile runs where my HR was over 180 for the duration of the run, I contacted my GP again, knowing this was not normal for me. I knew something was wrong and I was scared to run again until I knew what it was and I felt safe to exercise again. He reluctantly organised an ECG, advising again that myocarditis was very unlikely, based on blood test results I had had at A&E in August. The ECG was ’normal’ and there was no offer of further investigation. I asked if I could be referred back to cardiology. He said that as my BNP was normal then it couldn’t be myocarditis and cardiology wouldn’t accept the referral. So frustrating, especially when living with an experienced GP who’s opinion I trust.

At that point I was feeling pretty despondent as I felt I was getting nowhere with my GP. I just felt he didn’t believe me or consider my symptoms important enough, so I sought private medical help. My partner couldn’t work out whether it was myocarditis or multiple microemboli so in January, as my breathlessness was the symptom that was affecting me the most, I initially saw a respiratory consultant, Dr George, who works at the Brompton, London.

Lung function tests were good and the CT scan showed no signs of inflammation, interstitial lung disease or pulmonary emboli, which was a relief. There was still no clear explanation for the breathlessness so I was referred to a private cardiologist, Dr Khamis, for further investigations relating to my chest pain, a lower than expected resting heart rate and higher than expected heart rate during exercise.

During this initial consultation in February, the cardiologist scheduled a battery of tests for me and in late March, at a cardiac unit in London, I had an MRI, an echocardiogram and was fitted with a holter to look at my heart rate over 24 hours.

Four weeks later, I received confirmation from the cardiologist of post-Covid Myocarditis. News I received with mixed feelings. Relief that I wasn’t going mad; something had been and was still wrong with me as a result of getting Covid. Anger and frustration that I had been forced to spend so much time, effort, energy and money to receive the diagnosis we already suspected, when my GP could have helped had he been more pro-active.

I have been told to rest more and to not exercise for 6 months, I am being scheduled for a cardio pulmonary exercise test (CPET) in a few months and a repeat MRI in 6 months. I have been also been referred for further investigations for a potential breathing pattern disorder as my breathlessness is still very limiting.

Like so many others, my ‘normal’ life has now changed; I can’t do the same things I used to do. It’s tiring, it’s annoying, it’s frustrating and it doesn’t seem fair.

So now, unfortunately, it’s just a matter of waiting and hoping that I fully recover. I’m very lucky that I live with a competent GP who knew that my symptoms needed further investigation and I’m hugely grateful to her for helping me to persevere and find out exactly what was going on. It’s so sad that countless people who have been affected in the same way as me will no doubt give up once their GP tells them nothing can be done and will be left suffering and not knowing why".

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