On 21 September I went to the doctor as I felt run down and like I had glandular fever (this was the first of seven appointments in a month). I had a check-up and bloods on the day, and an X-ray done on 27 September. I went back on 29 September to chase up the results and because I wasn’t improving. I stopped exercising, as I didn’t want to make it worse.
I got the text about my second Astra Zeneca jab and was keen to get it (I hadn’t put two and two together yet), so I went to a hub on the 2nd of October. During that weekend, I went downhill and started to get ‘classic’ pericarditis symptoms – fast heart rate, left side chest pain, shortness of breath, and fatigue.
On Monday morning, the 4th of October, I woke up with my heart beating so fast I thought I was going to have a heart attack – it was like I had overdosed on drugs or something. I felt so tired I just wanted to sleep for another hour before getting up for work, and I slept on the cold floor without a blanket. I felt exactly the same an hour later when my alarm went, so I booked an 11am doctor’s appointment. He checked vitals, lungs, and ordered a bunch of tests (all these came back ‘normal’). I told him I was sure it was the vaccine, so he submitted an adverse reaction report (which later ended up being rejected due to ‘lack of information’) and he wrote me a referral for an X-ray stress echocardiogram.
On 6 October I had the stress echocardiogram. I was on the treadmill for ten minutes, and they kept saying “You can stop now”. I had felt pressure in my chest and had a fast heart rate but wanted to keep going so they would see what’s going on and believe me. Afterward I could barely breathe. They said my left atrium was slightly enlarged but I should be fine and could go back to working out. I thought they knew what they were talking about despite me feeling the way I did. I did 30 minutes the next day at a beginner pace and felt like I was 90 – I had fatigue, was short of breath, and had a thumping feeling in my chest making my body feel heavy and foreign, like it wasn’t my body. It was like someone was sitting on my chest while in resting phase. I was sore for a week and didn’t work out after that. I was upset and angry they’d given me such ignorant advice – who would have been responsible if something happened to me?
On 18 October I had a cardiologist appointment. My blood pressure was high when I got there and they asked whether I’d been active that morning, which I hadn’t. Their concern made me concerned. I had an ECG (normal) then saw the cardiologist. She asked questions to rule things out and told me there was nothing notable with the stress echocardiogram results, and that I didn’t need a return appointment.
On 19 October I ended up in ED as I had been on the phone to make an appointment for an Xray, and they asked me some questions and thought I might have a blood clot because of my symptoms and me mentioning I’d had the Astra Zeneca vaccine recently. In ED they did an ECG and bloods. I was there for four hours then referred back to my GP with advice to take Panadol and Nurofen.
My doctor then requested a lung function test, but before he said that he said “Do you think it could possibly be in your head?” I immediately shut him down and said, “No.”
On 20 October, I had the lung function specialist appointment. I was put in a chamber with a mask that had a plastic tube and bag on it and did a number of breathing exercises for 20-30 minutes. The results were fine. The doctor then ordered a VQ lung scan (360-degree, in-depth scan).
On 22 October, I had a CT angiography, the results were fine.
My doctor’s communication over that month was terrible. I’d had seven appointments and he wasn’t following up results or advising me when he had them or sending referrals, so I booked appointments just to get him to do these things. I kept saying my symptoms are from the vaccine, but he was exploring everything else instead. He thought I had asthma and prescribed and inhaler; he tested me for mercury and lead poisoning (chemicals I’m exposed to in my job); he analysed my history and environment… Considering the vaccine was his last resort, then he said “Have you had a B12 shot?” I was dumbfounded – it was a whole lot more serious than that! When he cracked it at me on the phone saying, “I’ve done everything you requested!”, I decided to move on but reported him to his manager telling her she can’t have him questioning whether people’s symptoms are all in their heads. She was very apologetic and wished me all the best.
On 13 November, I went to a new GP. This one ordered tests for things not previously looked into and prescribed me colchicine, which I only took for two days as it I had a reaction to it, then saw there were two pages of side effects.
On 15 November, I had the VQ lung scan done and on 24 November I went for a second lung function test (the exact same one I’d had prior) and my results were “respiratory pressures are reduced, suggestive of a degree of respiratory muscle weakness”. The specialist could see my heartrate spiking up with any movement on the six-minute Holter monitor walking test and acknowledged that something was wrong. It was the first time I actually felt validated.
On 3 December, I got the results back from my GP from the lung function specialist saying, “We can see there’s something wrong, but don’t know what it is,” so I was referred to a new cardiologist to do a Vo2 max stress test (the type athletes do). I was told the wait list was four-to-six months (I didn’t have it until March 2022).
Throughout November and December, I had been taking Nexium (to line my stomach) and about ten ibuprofen per day to alleviate my symptoms as I hadn’t been prescribed any pain relief. I started getting bowel issues, so I realised I had to stop taking them.
A friend had a wedding mid-December and I’d been drinking (no-one had advised me against it). That night my heart rate was so fast I couldn’t sleep and I did not want to lie down – it was scary. I realised alcohol was really bad for my condition.
On 7 January 22, my symptoms were still the same (fast heart rate, chest pain, shortness of breath, and fatigue). I ended up going to a cardiologist that a family member knew, the waitlist for the other one was still a few months, and I was still suffering. He prescribed 25mg of Prednisolone which didn’t work. I emailed him and he said to ‘up it’ to 50mg. I was on 50mg per day for two weeks, but it severely affected my mood – I was angry and irritable and knew I had to come off it. The cardiologist told me to wean off it but didn’t tell me how much to take each day. He was ignoring my emails in which I asked how much to wean off at a time, as I knew it had to be done slowly. I ended up emailing all five clinics he worked at (five different emails) to try and get a response. He wrote back “I’m at my wits’ end about what to do with you! I don’t think anyone can help you”. When I was weaning off the Prednisolone, I ended up breaking my hand on my car in anger (out of character for me) and it was in a splint for six weeks.
On 18 January 2022 I had an echocardiogram done. The cardiologist (known by a family member) said the results were fine and said verbally it’s possibly a delayed immune response to the vaccine, but on the referral notes to the rheumatologist I attended on 22 February which he read off the screen to me, it said ‘suspected pericarditis from the vaccine’. That was the first time I’d heard this. The rheumatologist hadn’t received any results from the cardiologist – I was irate about this as every appointment means a day off work to travel etc.
On 15 March 2022 I had my second appointment with the rheumatologist who told me I didn’t have an underlying autoimmune disorder in relation to the vaccine. That was the fourth specialist who told me they couldn’t help me.
On 29 March I had an appointment with a third cardiologist and had the Vo2 max test. I was on a treadmill with speed and incline and had about 20 monitors on me and wore what’s like a gas mask. I went for eight minutes, and my heart rate was 180bpm. They pushed me by 20 second increments and said they had good data from it, plus I wasn’t sore the next day either, which was a first. They then had me wear a ‘Heart Bug’ monitor for one month, which connects to your rib cage and collar bone, and has a small device collecting data. The results returned that everything was fine. I felt like they were downplaying everything.
In early April 2022, I hadn’t been able to sleep as I was stressed from thinking this was going to be a lifelong thing. I was up doing research every night and sleep deprived and ended up crashing my car.
I’m still working, and some days I need to go home early, but idle time isn’t good for me. My symptoms are still there and are only about 10-15% better than last year. I am walking on a treadmill half an hour a night – it’s really difficult to see 60-year-olds running past my house, knowing that I can’t.
I have nights when I’m in pain and can’t sleep as my heart rate is high and I wonder if I’ll wake up the next day. I have brain fog, hand twitches, and am forgetting things. I can’t exercise, I can’t drink alcohol, I have spent thousands of dollars, time, and energy on trying to get diagnosed. This has affected my career, social life, and mental health. I struggle to focus and stay motivated. It’s hard to plan for the future and some days I feel no hope.
I’m in a vaccine-related myocarditis/pericarditis Facebook group which has been beneficial for information sharing and connecting with others who are going through what I am. I’ve had Covid also in the last couple of weeks, which is taking time to get over.
I’m going to a naturopath who has referred me to a homeopath dealing with vaccine side effects. The cardiac MRI is the only test remaining that I have left to do – I’ve done everything else.