I was standing at the reception desk of my doctor’s surgery when someone came up behind me and tapped me on the shoulder. Turning around, I couldn’t have been more shocked. With mask in situ to protect my immunocompromised body from the rampant surgery germs, I may not have looked as shocked as I felt. It was my rheumatologist, randomly departing the surgery on his day off at the exact same time as me. However, considering the events of the previous week, it was not random at all. He had been sent by God to give me peace of mind.

My descent from robust health to chronic illness had been rapid and relentless. Starting with episodic nausea, progressing to debilitating tiredness, the last step was a deep, aching muscular pain across my shoulders and upper arms. A quick Dr Google search (expertly done by a doctor after all!) came up with polymyalgia rheumatica. It made perfect sense. True, as an emergency doctor, I had never diagnosed it before, but a friend had had it and it sounded similar to the story she had told me.

Dutifully making an appointment to see my GP at her next available appointment two weeks later, I figured that if I was wrong, I might even be better by then. However, the next day I was much worse. Maybe I should see someone right away. That someone was the GP registrar, brushing away my comments on the bizarre nature of my pain and reassuring me that I had the flu and would soon be well. I went home, rolled my eyes and complained to my family that young male doctors don’t even listen to middle-aged women who have been doctors for more than 30 years.

I did get a form for some blood tests. I then felt free to start some out-of-date prednisone squirreled away in the fridge and see if I felt better. That was the recommended treatment for polymyalgia rheumatica anyway. The prednisone worked. I felt amazingly better. The nausea settled. The pain improved. What joy – I was even able to sleep that night on my stomach with my arms above my head.

I figured that 25 mg was probably too high a dose for polymyalgia rheumatica, so I obtained some brand new 5 mg tablets and took 15 mg the next day. That didn’t work nearly as well. So back I went to another dose of 25 mg with again a reasonable effect. But that day I also got my blood results back. Normal C-reactive protein. Normal ESR. Very abnormal liver function tests. Did that make sense? Maybe? However, I probably should have a few more investigations.

My regular doctor rang me during her lunch break. She left me a form to pick up for a variety of fancy tests which I dutifully got done right away. Little did I know that the laboratory I used would take more than two weeks to get a result through. She also thought I should get an ultrasound of my liver. Now that was easy! I had connections. On Good Friday I went off to the Emergency Department and I told my story to a longtime colleague, someone willing to stop and listen and think laterally about what could be going on. The first thing he said was I was too young to have Polymyalgia Rheumatica…because I was younger than him!! I wasn’t convinced by his argument.

I replied that I felt so good on the prednisone, so it must be that! He retorted that everyone feels amazing on prednisone😊Liver ultrasound done by my husband – normal. Bloods done by Steve – not normal. My creatine kinase was 24,000!!! What!!! Of course, as an emergency doctor the first place my brain went was down the catastrophic associations of rhabdomyolysis, renal failure, ICU admission and dialysis. But my kidney function was normal. I figured I would not have a diagnosis that weekend, but I would not be going home. I also would not be flying to Melbourne to celebrate my husband’s birthday the following Tuesday.

I went home on Sunday after 24 hours of intravenous fluids and 24 hours of oral fluids with a sluggishly decreasing creatine kinase. I still didn’t have any noticeable weakness. I thought it was the pain that was stopping me from using my upper arms properly. There was a vague plan. I would get followed up by someone, but they weren’t sure who. It was the Easter long weekend, so most people were uncontactable. The hospital physician was a locum.

On Tuesday I woke up with bilateral jaw pain and difficulty chewing. Dutifully, I went back to the Emergency Department. More tests. Creatine Kinase still dropping slowly. Ongoing tachycardia. Normal troponin. Normal ECG. No pericardial effusion. Home again, but this time with a referral to see the rheumatologist. His receptionist rang that afternoon with an appointment for the following Tuesday. Now all I could do was wait, but at least I had a plan.

I struggled through the week with nausea and fatigue, and of course, pain. I was now too scared to take anything as I didn’t know if Panadol or Nurofen could have been responsible for my bizarre set of symptoms. I didn’t take any other medications. No statins. No supplements. As a long-time vegetarian, I believed that if you had a healthy diet, you didn’t need to waste money on vitamins.

At that first appointment with the rheumatologist, I could tell immediately this was much worse than what I had thought. I hadn’t realised how weak I was. I now had difficulty washing and brushing my hair and was unable to tie it up in a hairband, but I still thought it was just due to pain. I naively thought that this was just a weird virus that would eventually resolve.  At the end of the appointment, after going through the plan to get a diagnosis, and then a brief rundown on all the probable and possible treatment options, most of which sounded incredibly scary, the rheumatologist looked at me and asked me how I am. I think because I feel so unwell, that I actually had no emotions at all. It doesn’t feel like this is happening to me. Is this even real, or is it all a dream?

As an Accident and Emergency doctor, I am also used to separating my heart and my brain. You can’t get too emotionally involved when everything is in chaos around you. In fact, the more chaotic things get at work, the calmer I feel. I just do the next thing, and do it as well as I can. My kids always get worried if I’m too calm – they think something terrible is about to happen!

At least there was now stuff to do to get a diagnosis, so I could start treatment. Just what Emergency doctors are good at! This was greatly helped by my husband’s connections in radiography. There were multiple blessings from multiple people, willing to go the extra mile for me. The boys in the Lismore MRI department did my MRI after hours so that my surgeon would know where to get the best sample for the muscle biopsy. The surgeon fitted me onto her surgical list the following day – a patient having just cancelled because of Covid. A PET scan was cancelled while my husband was chatting to the X-ray Department clerk, so that was done on Friday. Three days to complete investigations that could have taken others three weeks to complete.

Then another slow week of waiting for results, this time more aware of my weakness. I didn’t feel too bad sitting in a chair, but as soon as I stood up, I felt like I had been hit by a bus. By the end of the week, I couldn’t dry myself after a shower,r and I couldn’t get out of bed on my own. But I could still walk!!

At my second appointment, my rheumatologist had a diagnosis: Immune-Mediated Necrotising Myositis. What had probably happened was that a random virus had interacted with a genetic propensity that incorrectly informed my immune system that my muscles were about to cause me mortal danger and to seek out and destroy them. This resulted in my brain and body shutting down in response to broken-down particles of muscle cells circulating in my blood, with resultant havoc.

At the time, it didn’t mean that much. I had resisted doing too much googling – sometimes knowing too much is worse than knowing too little. There is so little known anyway. A few case studies. No controlled trials. I was willing to do whatever I was told. I was just thankful to be back on Prednisone!! The rheumatologist warned me that I would feel awful on prednisone, but I couldn’t see how I could feel worse than I did already. In actual fact, when the prednisone kicks in at lunchtime, I feel amazing!! Who cares about a bit of insomnia if food tastes amazing, and your brain cells work? Being a bit manic is my normal state anyway😊(Well, that is what I thought at the time…unfortunately, my manic response to prednisone didn’t last long)

I would also be on Mycophenolate, an immunosuppressant used in transplant patients. I did go home and research that!! What side effects did I need to worry about? What drug interactions? How should I take it so that it will work the best? I wasn’t going to have it not work because I wasn’t taking it properly!! My latent OCD tendencies kicked in, mostly cured by working in Emergency and having twins!! But what else did I have to think about?

On Saturday night I noticed some lower right lateral chest pain. I chided myself on spending too much time working on a jigsaw puzzle with my daughters.  I must have been overly ambitious in my ability to use my right arm and chest muscles and now I was paying for it.

Overnight, I was unable to lie on any position except flat on my back, without getting right stabbing chest pains. Sunday morning, I got up, took Panadol and prednisone, and propped myself in a chair with pillows because every time I moved, I got a knife swiftly stabbed between my ribs. Slowly over the morning the pain settled and I had a reasonably comfortable afternoon.

Sunday night the pain got worse again. Now I could only lie on my left side. I waited out the morning for the pain to improve, but this time it did not. I felt sweaty. I was nauseous. I googled symptoms of pulmonary embolism – very funny for an emergency doctor. I had felt phlegmy all morning and clearing my throat. I thought the most likely thing was that I had a chest infection. But I had only been on medication for five days – would I be that immunosuppressed already?

The Emergency Department on a Monday is always a madhouse – I should know because I work every Monday evening. The last thing I wanted was to go in after my husband got home from work that evening. But then my husband texted me. There were two other sonographers on, and they weren’t that busy. A rarity for Ultrasound! I said I was feeling worse and he texted right back that he was coming home to get me.

It is probably harder for an Emergency Doctor to decide when to go to hospital. What is over-reacting? What is under-reacting? Who can even know! In the end I decided I would rather be sent home with something insignificant, than stay at home and become septic. The latter would be far more embarrassing.

The waiting room was packed. It was a typical Monday. My previous presentations I had got VIP treatment and been seen on arrival. This time it was much busier. I figured I would have to wait…but for how long? The triage nurse was new and didn’t know me very well. I tried to explain that I was on immunosuppressants for an autoimmune illness, but she didn’t really seem to understand. She definitely didn’t look impressed. My oxygen saturation was 97%. My heart rate was 140. But I still didn’t think a pulmonary embolism was really possible or probable. My worry was sepsis hidden by prednisone. I still naively thought it might all be muscular.

I do have the failing of not looking sick!! My doctor chattiness comes to the fore and I try to tell my story succinctly and clearly. Melodrama is not my style. Downplaying everything is. When I was a child my mother only knew I was sick when I fainted!  I got given a triage category of 4. Ideally, to be seen in one hour, on a day like this, that would be an eight-hour wait for a regular patient.

I sent my husband down to the main department to see which emergency bosses were on. We had been to the wedding of one of them, and had known him since he was a resident, but he was surrounded by chaos. There were nine ambulances waiting to unload. There were category 2s being called for Resus. It was bedlam everywhere. Cam came back and we waited for a bit longer.

Then I suggested he see if the doctor would do a form for a Chest X-ray and if that was OK I’d go home. I’m not a pushy person, and it didn’t seem practical to expect quick assessment. I still thought I was probably fine. The in-charge doctor got the two-minute story from Cameron and the only thing he said was: “Jennie is not going home!” About 20 minutes later he found me a bed.

The lovely Emergency Registrar saw me and sent off my bloods and organised my Chest X-ray. The X-ray didn’t look particularly exciting. Definitely no loss of costophrenic angles at the bases to suggest pneumonia. But then my C-reactive protein was 100, up from 50 ten days before. My white cell count was 22. It had never been elevated before. OK – so I’m not going home again. The doctor didn’t have to work very hard to convince me to have a CT-pulmonary angiogram, but I still thought it would be normal. My oxygen sats were fine, my blood pressure was fine, my calves were fine…why would I even have a pulmonary embolism?

After the scan I asked the radiographers if they could see anything and they said yes…what! Wait for the report they said, but you definitely have an embolism. Go figure – probably why doctors should never try to diagnose themselves!! Cam did a leg ultrasound on me shortly after but there was no evidence of a recent deep vein thrombosis. So why did I have a pulmonary embolism??

I did google that and found that a generalised inflammatory response with an autoimmune illness, probably some infection at the base of my lungs, high-dose prednisone, all put together could potentially cause de novo pulmonary emboli in both my lungs. Chatting to the respiratory physician the next day he agreed it sounded plausible which was good enough for me😊 When I was younger, I was very prone to coming up with rare diagnoses like Wegener’s Granulomatosis to which I would get the sardonic reply from the physician, “Well Jennie, it isn’t very likely”.

So Clexane, some Ceftriaxone to cover any bugs and a noisy night in the emergency department because there were no beds on the ward. I had a single room with a bathroom, but it was the Covid room right next to the ambulance bay and I heard every ambulance arrive and leave as it slammed its doors directly on the other side of my external door. But it was far better than anywhere else in the department!!

The next morning, I saw the respiratory physician, and gleefully went home on oral anticoagulants and antibiotics, and with a plan to see him in his rooms. He also gave me his private mobile number as he would only let me go if I promised to ring him immediately if anything changed. I countered that surely, I had proved I was reliable by coming in after only one day of chest pain!

So good to be home!! Had poached eggs and salad for lunch and spent a relaxing afternoon chatting to Cam. I already had an appointment to see my GP on Thursday. I could get everything sorted then. I had assumed that the respiratory team would chat to my rheumatologist and let him know what had happened…they had mentioned that they planned to.

It was the next day at six pm that things started to unravel. I got a text that my General Practitioner was sick and I started to panic. What if I couldn’t get an appointment with another doctor? How could I even explain what was happening to another doctor? What if I got the Registrar again? I had already had three nights with minimal sleep…and every time that night when I woke up, I started going over everything again in my head…playing out scenarios and trying to work out what I should say.

I rang the surgery at 8:15 exactly. It took a few phone calls to get through but not that long. I played the “This is Dr Jennie Mowbray” card…just in case. She immediately and cheerfully fitted me in as an extra patient with another doctor. I thanked her profusely.

I was seen promptly by the doctor, even though I had been added in as an extra to her morning. She had my rheumatologist’s letters which quickly got her up to speed. I had my list of what I needed. She was amazing and got it all done. She said she was happy to be my backup when my regular doctor was away. I was very thankful. I was still worried that my rheumatologist might not have been aware of what had happened. She sent him a quick letter telling him about my admission.

What I probably needed was some time to debrief about everything, but this was not the time. I was worried about my new medications and the Mycophenolate. I was feeling really stressed about everything. No sleep, so much pain, not knowing what I should be worrying about and what someone else should be worrying about. Not knowing who I should tell or how, which symptoms were important and which were not.

And then my rheumatologist was there beside me. I could tell he didn’t know. So I told him about my admission and the emboli. I could see the care and concern in his eyes. I felt heard and understood. Cam showed him my CT report and some of the pictures that he had on his phone. We discussed a general plan with tests my respiratory physician will do. He brainstormed about where he might go next, saying he would think about second-line treatment early. But the main thing was I knew that he knew, and now I didn’t have to worry about what I should do. I could just relax.

I walk out feeling short of breath, dizzy and exhausted, but also elated. It was an answer to prayer. Incidentally, it was a prayer I hadn’t actually prayed! But that doesn’t make any difference to God. He knows what is on our hearts. As Paul wrote in Romans: “For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered.” God was telling me that He has this. He can sort things out in ways I have no idea about. All I have to do is live one day at a time. I am never alone.

I would have lost heart, unless I had believed
That I would see the goodness of the Lord
In the land of the living.

Wait on the Lord;
Be of good courage,
And He shall strengthen your heart;
Wait, I say, on the Lord!

~Psalm 27:13-14~