I was 24 when I got my first COVID vaccination. I had worked in the military for almost five years, I had no prior health conditions and was in great health. We have to pass a fitness test for the military every year, and I was going to the gym five days a week. My partner, friends and I are pretty adventurous, and we used to go 4WD, trail walking and camping fairly regularly.
I got my first Pfizer vaccination in my left arm in mid-May 2021 because it was mandatory in my workplace. I didn’t give it much thought, I just got the memo that we had to get it for work, so I followed directions. I had no notable side effects after my first vaccination.
I had my second Pfizer vaccine in mid-June 2021, also in my left arm. I felt fine and went on with life as usual. About three weeks later, I started experiencing severe shortness of breath. It was a similar feeling to when you eat way too much and can’t draw a full breath afterwards. I’m the ‘suck it up’ type, so I just ignored it for the next few weeks, although I did mention it to friends and they suggested that I go and see a doctor.
Eventually enough people expressed concern about my symptoms so that I took their advice and booked a doctor’s appointment through our work health centre in early August. The doctor sent me for a chest X-ray and blood tests. She also recommended Metamucil as she thought perhaps I was constipated and that’s what was causing my shortness of breath. I received notice that my chest X-ray was normal, but I didn’t hear back about my bloods, so I figured they must have come back normal too.
Two weeks later I went for my military medical assessment, which is conducted once every 5 years. This was with a different doctor. I mentioned that I was still having breathing difficulties, and the doctor suggested that I was probably suffering ‘air hunger’ caused by anxiety. I have never been diagnosed with anxiety and had no thoughts, feelings or other symptoms that would indicate to me or anyone else that I might be anxious. I communicated this to the doctor, and though she seemed quite convinced that my shortness of breath was due to anxiety, she was willing to investigate other possibilities. She referred me to a lung specialist and also sent me to get an ECG and an echocardiogram. I had the full lung function test which came back normal, at the end of August.
On the 3rd of September I had my ECG, and on the 24th of September I had the echocardiogram. During the appointments I was informed that the ECG indicated my T-wave was inverted, and that the echocardiogram showed my right ventricle was dilated. This information concerned me. Around this time, someone we know in Victoria started experiencing symptoms like mine after he got the COVID vaccine. For the first time, it entered my mind that my shortness of breath might related to the vaccine as well.
The following Monday was a public holiday and I waited all weekend feeling on edge, wondering what the ECG and echocardiogram results meant. I was surprised that the referring doctor didn’t follow up with me immediately after receiving my results. I waited until Wednesday afternoon but then decided to follow up myself and booked in to see the first available doctor at my work health centre on the same day, the 29th September.
This doctor was quite dismissive and, like the doctor I saw previously, he said that I probably had anxiety and that’s why I was short of breath. He said that just because my right ventricle was dilated, it didn’t mean that it would cause shortness of breath. He said it’s probably nothing. “Probably” didn’t feel very reassuring to me, so I asked if I could be referred to a cardiologist. He said no. I pressed him for further tests until he sent me for blood tests to check my thyroid function and BNP. I went for the blood tests immediately after the appointment.
Over these few months after my second vaccine, my physical exertion levels dropped off significantly. I went from doing CrossFit five times a week, to not being able to manage a single box jump. I’m sure you can imagine, for someone with a perfect health record who has never experienced any health setbacks, this felt weird and distressing. It was debilitating. I had to walk up a small flight of stairs to get to my office at work and would be gasping for air by the time I reached the top. I was dragging myself through work and would go straight to sleep when I got home. It was the weirdest feeling in the world.
After waiting for two weeks and hearing nothing from the doctor regarding my blood test results, I again followed up by booking myself back in to the medical centre on the 13th October. My appointment was with the doctor who I saw in August who had suggested I had anxiety-driven ‘air hunger’. In this appointment she told me that my blood results showed elevated BNP, which is an indication of heart failure. I asked, ‘Okay, what now then?’ She sat gaping for a few minutes, then she backpedalled saying maybe it wasn’t such a big deal. I started to feel angry now, because at 24 years old it’s a big deal to be struggling to walk upstairs, unable to breathe properly, and showing heart irregularities on multiple tests. I asked again to see a cardiologist, and this time I was given a referral.
On the 18th October I saw the cardiologist. He didn’t seem to know what to make of my symptoms and test results. He recommended a cardiac MRI, which has a three to four week wait list. I booked in for the MRI on the 8th of November. In the interim, I started experiencing chest pain for the first time. This scared me more than any of the symptoms I had experienced so far. I was struggling to make it through a workday now, so on the 26th October I went back to the work medical centre. This time I was booked in with a new doctor, who told me that I was overthinking things and that when I felt a bad episode coming on, I should just go for a run and take some deep breaths! I was speechless. As soon as I left his office, I burst into tears. I feel like this was the day that I lost any last shred of trust that I had remaining in our healthcare system and medical professionals.
On the 8th November I had the MRI. Three days later the cardiologist called me to say that the MRI showed an area of focal myocarditis. I asked a lot of questions but he didn’t seem to want to provide any further information. I asked if it could be related to the vaccine and he said that it was possible, but that the link could not be proven. I think it’s important to mention that at this point I had not had COVID, so the heart damage could not have been caused by that. He did not give me any recommendations on how to care for myself in this condition or how to manage exercise and physical exertion. He offered me perindopril if I wanted it. I agreed to try the medication. I took it for a month as directed, but as I felt no benefit, I gave up on it after a month.
During the next several months I went to various doctors to try to get help. I wanted a proper diagnosis. I wanted to know what caused this, I wanted guidance, I wanted information, and I wanted to get my health back. The general refrain was, ‘If you have myocarditis, it will heal on its own in a few months, so don’t worry about it.’ Never mind that I had now evidently had it for six months and it was not healing, and I was not okay.
I reported my symptoms to the TGA as a suspected adverse event from the COVID vaccine. One of the doctors also reported my focal myocarditis diagnosis to the WA Vaccine Safety Surveillance reporting system. As a result of the WA report, I was referred to an immunologist who I saw in early February 2022. The immunologist said that it was likely that my symptoms were due to an adverse reaction to the vaccine. He issued me with a six month exemption from any mRNA vaccine but he encouraged me to get the Novavax vaccine for my booster shot. I was incredulous that he would still think it was safe for me to get any further vaccines while I was still suffering from active myocarditis from the previous one.
In the end I was able to secure a 12 month exemption from all COVID vaccines, but I had to really push for this, and it wasn’t granted until July 2022. Finally, after going to doctor after doctor, I managed to find a doctor at the work medical centre who seemed to take my condition seriously and was willing to work with me to find a solution and get me back to health. It was a huge relief. This doctor put me on medical leave from my work since mid-February 2022.
At mid-September, I am still on medical leave with pay. On the 17th of August, I received notice from the military that I will be permanently discharged in December 2022, as I have been deemed medically unfit for service.
This is not the career path I ever imagined when I entered the military almost six years ago.
I saw a few more specialists this year. One lung specialist told me that I can’t breathe because I’m overweight, and that I should do more exercise. It was devastating to hear, because as you know from reading the beginning of my story, my fitness was military level before this happened to me. The specialist obviously had no idea how desperately I miss being able to exercise.
I think the worst of my symptoms was late in 2021, but I am still not able to work. If I don’t do any exercise at all, I can function to some degree, but every day I have chest pain and I struggle to breathe. I put in for a work compensation claim which was denied, so I am now seeking advice on what to next. At the moment I feel hopeless about my future recovery. Will I be able to exercise again? Will the chest pain and shortness of breath ever go away? Will I be able to work? I don’t know how I’m going to support myself after December this year. I’m extremely lucky that my partner understands and supports me.
To anyone who has experienced adverse events like mine, I would say – don’t give up on trying to get your diagnosis, care and exemption. I had to push and push and push to find any medical professionals who would take this seriously and get me the appropriate care. No one will take your health as seriously as you do yourself, so don’t give up on yourself even if other people do.